Just My Current Perspective

No Answers - Part 5: Closure and QA

2017-01-18T09:41:00.002-06:00

I read an article not long ago about an oncologist who met with the family after a patient's death; the family was seeking "closure" [I put that word in quotes because I'm not sure I believe such a state is even possible in grief], and it seemed like the physician was as well. I am envious of the family in this story in that the doctor who treated their loved one seemed to be interested in him personally and in that they got to have that wrap-up type of meeting with the oncologist.

CLICK HERE TO READ THE ARTICLE

Somehow I don't envision being able to get a follow-up appointment scheduled with any of Dad's doctors now, which leads me to wonder: What rights - or responsibility, if any, does a family have after a patient's death, especially when they feel things could/should have been handled differently? And, as an adjunct to this thought process, what responsibility, if any, does a physician (an oncologist, a surgeon, etc.) have to the family after a patient's death?

I like the idea of a "closure" appointment. I think the family would need to be very clear on their goals of such as interaction, and I think if there are any negative or ambiguous feelings involved that the family may need to put those aside or at least carefully consider the impact of those on the possible productiveness of such a meeting. In many cases, if such a meeting were to occur, I think what the family would have to say would be, as the doctor who wrote the article said, coming from a place that is "not accusatory" but rather "a need to revisit earlier events."

I think there could be growth and learning (and potentially "closure") from the perspective of both family members and the physician in a wrap-up meeting. I think many doctors may be hesitant to take part in such a meeting, though, because they couldn't charge a fee for their time for it, because we live in such a litigious society, and/or because it would be emotionally difficult to face many of the emotions that could arise.

And because I think doctors aren't good at death. They are trained to help people avoid it, and I think it's especially difficult for them when that has to change. Like society in general, doctors almost always default to prolonging life. Even for those who refer patients to hospice care more often than their peers because of their chosen specialty areas, giving up that control (which is surely how they must see it) isn't easy, and, as a result, in many cases and for a variety of reasons, I think physicians tend to recommend more aggressive end-of-life care for their patients than they would for themselves.

CLICK HERE TO READ AN ARTICLE ABOUT THIS TOPIC.

In cases when the physician is involved with the decision for a patient to bridge over to hospice, it's not unnatural for him to want to disconnect with the patient at this point, although - let me be clear - in my opinion, it's not right for them to do that. (It may be hard for him to stay involved in the care of a patient whom he knows is going to die soon, but that is part of his responsibility.) Instead of being a "hero" through providing a cure for the disease for a patient, they have the opportunity to serve in that role by supporting and guiding a patient and his family during the toughest of times, which surely requires true fortitude and is a sign of a truly devoted caregiver.

Dad's oncologist completely failed in that regard. Once we had brought up the idea of hospice and after he had agreed that it was the best option at that point, he sat in Dad's hospital room and told my mom, my sisters, and me that he would still be involved with Dad's care and that he would follow-up by calling my parents' house on the following Monday to check in. And, as I recounted earlier in our story, that was the last any of us ever heard from him. I wonder if he has ever thought about that last conversation - or my dad and my family since it occurred.

Making the decision to stop curative treatments for Dad was both grueling and easy. It was easy because we didn't feel like we had any other choices - it was crystal clear to us that he couldn't stay in the hospital, and he couldn't go to rehab. We didn't want to consider a nursing home as an option at that point, and we needed help to take care of him at home. With hospice, that's what we were going to get. And Dad was asking to go home, saying "it's too much." It was grueling because it's awful enough when a person has to make life-or-death treatment decisions for himself, but having to do that for someone else, someone you love so very much, is nothing short of torture. It's especially unfair when most of our knowledge has come from Google or in a ten-minute-long crash course taught by an oncologist who doesn't really know the person you love so damn much, while you listen in such a state of shock. It sets you up for a lifetime of second-guessing yourself: should we should have made a different choice somewhere along the way? Add that to the list of things that we will never know.

But back to the idea of a wrap-up session or at least some kind of communication between a patient's family and the physician after a patient's death: Does it seem like poor practice to anyone else besides me that physicians so rarely follow-up to find out the patient’s and/or family’s perspective on the treatment and the care provided? We’re all about quality assurance in business, but what about in health care? The QA processes with which I've been involved over the years as a healthcare provider center on things like how long a patient has to wait before being seen by a practitioner or how quickly the treatment note is written and filed after the intervention occurs.

So many treatments for seriously illnesses are judged solely on whether or not the patient survived, but what about the patient’s quality of life, what about the perception of the care the patient received, both during and after treatment? Shouldn’t this be part of the research collected in evidence-based practice? Capturing the patient’s perspective is central to research on quality of care because it provides a complete picture of treatment impact. This can be done with standardized questionnaires that ask patients to report on their functioning, well-being, symptoms, and satisfaction with care. To my knowledge, though, this data, is not collected routinely in either clinical research or practice.

I think about exit interviews and the debriefing process, the latter of which has become of particular interest to me as an instructor of future occupational therapists in relation to things that can be gained during post-exam, lab and clinical experience follow-up, and end-of-course interactions with students. I take to heart the things students in my classes say (not just to me but to each other and in written reflections) in wrap-up sessions and believe that the debrief is one of the most important parts of learning. I know there are some physicians and other healthcare providers out there who strive to glean information from which they can improve after patient interactions; I only wish there were more and that the "wrap-up" could become a standard part of medical care.

Debriefing with my students

Epilogue

2016-05-17T11:32:00.000-05:00

Note: Like many of the pieces to this story, this part is full of emotion, in this case about two things that are very important to me - my dad and my profession. I know LOTS of health care workers including many OT's, PT's, and speech therapists who are excellent at what they do and who are dedicated to going the extra mile to advocate for their patients and to meet their patients' needs. Unfortunately, though, the majority of those with whom we came into contact during my dad's illness were not of that caliber, a fact with which I find it very difficult to reconcile. Here's the story ...

Like lots of kids starting off in college, I really didn't know what I wanted to be when I grew up when I left home to go to college at the age of 18. It was my dad who took a good look at what my interests and my strengths were and who eventually found out about occupational therapy, a field in which I have loved practicing for the last 25 years.

I think some people just kind of fall into a career that they see as better than nothing or just so-so, some go with something that motivates them with money, and some just punch the clock while hoping that something better comes along. And then, of course, there are the lucky ones like me: those who somehow find their way to doing something for a career that they feel they were meant to do, something that, while not always fun or perfect in every way, gives them purpose and intertwines with whom they are in such a way that they know they are following their calling. I am one of the lucky ones, thanks to my dad. That's why part of what happened while he was sick disturbs me on such a level that I am afraid that a part of me will always be left feeling disheartened and disillusioned.

Steps to nowhere

The first contact we had with the world of rehab during Dad's illness was just a few days after his surgery, and right away things started out with a series of fumbles and ball-dropping. The slew of physicians on Dad's case kept telling us that Dad would begin to be seen for Occupational Therapy ("OT") and Physical Therapy ("PT") as soon as he was transferred out of the ICU onto a regular floor, which happened early on the Friday afternoon after his surgery on Wednesday. When no one from rehab showed up that day or the next morning, we asked again when it would start, and at that point we were told they “don’t do therapy on the weekend." Evidently, though, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon came to see Dad around noon on Saturday, he was surprised to learn that therapy services had yet to start for Dad. Evidently he followed up on it, because about an hour later the OT and the PT showed up. They had Dad sit up on the side of the bed and use the walker to get around the room a little (he was unsteady during both of these tasks), and they checked his movement and strength (fine on the right, not good on the left). All in all, the two therapists together were with Dad for a total of about 20 minutes, about half of which time was spent with them telling us that they thought he needed to go to an inpatient rehab hospital for a week or two and that we should visit a few in the area right away since the doctors were already talking about discharge from the hospital in a couple of days.

Once the initial mini-therapy session was over, my family was left to figure out what our next step was, with the knowledge that we had to work something out in the next 48 hours or less or essentially Dad would be sent home with only a follow-up appointment with the oncologist. Even now, thinking back to that time gives rise to the sound of a clock ticking loudly in my head; especially considering that we had just been given the news of how severely limited Dad's time was likely to be, given his prognosis. It was nothing short of shocking to think that after only a brief session of therapy the hospital staff seemed to feel that it was just fine to push us out of the nest, even though there was no possible way they could know if we were ready to fly or not (we weren't!).

And so we were left completely on our own to find a suitable rehab facility in essentially one day (a Sunday at that!). Keep in mind, too, that at least one of us had to stay right with Dad every second of the day and night, too, because of his impaired balance and mobility and his safety awareness issues, at the same time that we were literally left to use Google and the yellow pages to find some place that we felt could have a positive impact on Dad's future. To say that the task of figuring out what to do next was daunting is a vast understatement.

That Sunday afternoon, we toured the only two rehab facilities in the area that took Dad's insurance and that met our criteria, which at that point had essentially been whittled down to somewhere that had therapy services available to be carried out 7 days per week, was clean and safe, would allow around-the-clock family visitation, and had an opening the next day. We were also hoping to find a place with a Case Manager so that while Dad got his therapies and finished recovering from the brain surgery from the week before, we could get the support and referrals we needed to modify my parents' house to make it safe for Dad to go home and to go ahead and set up all of the follow-up care that would be needed after discharge. We settled on the second place we saw and let the admissions coordinator know that we were seeking a very short-term stay with aggressive therapy services, probably a week at most so we could then get Dad home and have him get ready to start treatment for the cancer. The coordinator said that could be arranged. We were relieved and felt that we had a solid plan in place for the time being.

From the minute we arrived at the rehab hospital, though, I felt there was a lapse in communication and a gap in the services that should have been provided. As Dad read the newspaper in bed and Mom and I unpacked, the Rehab Director came by to meet Dad. In talking to him about Dad's medical history, I reiterated that we were seeking a short-term stay of about a week with the goal of getting intensive therapies provided for Dad so that he could get a jump-start in his recovery. The Director said that the therapists there would evaluate him and then the team would report back to us with a plan. I told him that we would like to have input into the plan and that we were also seeking recommendations about any equipment and follow-up outpatient therapy services that Dad would need after he left the rehab setting.

Very early the next day, we were presented with a copy of the schedule for Dad's therapy sessions, which were to begin that morning. The schedule said that Dad would get OT, PT, and Speech Therapy (to work on memory) back-to-back starting at 8 a.m., and then he would get more therapy that afternoon. Good plan, except the OT showed up 45 minutes late, which threw off the entire schedule. In what became a pattern during Dad’s stay there, the therapists juggled things around to try to fit Dad in, and oftentimes Dad and the family member who was with him were not informed of the changes and/or the scheduled ended up not being able to be adjusted and some of his therapy got left out. As a result, over the course of his rehab stay, Dad did a lot of waiting, and, as par for a brain injury like his, he was having trouble dealing with schedule changes or uncertainty. He asked many times what was next, but the answer didn't seem clear to anyone around.

In the afternoon of Dad's first full day at rehab, the Director came into Dad's room and told my aunt, who was staying with Dad while Mom went home for a wardrobe change, that patients there typically stayed for a couple of weeks or more. He said that the therapists would present my family with a plan in the next couple of days. When my aunt called to tell me about the conversation, a red flag went up in my head: before we had made the commitment for Dad to come to that facility and less than 24 hours prior to that time, I specifically told the Director that we only wanted Dad to be there for about a week. Even if the guy didn't know ANYTHING AT ALL about Dad's prognosis, all he had to do was google "GBM" and he would've immediately seen why we were so concerned with time. Just in case the prognosis that we'd been given had any merit at all, we wanted Dad to be able to do what he wanted to do, and it was becoming clearer by the minute that staying there was not of his preference.

When I got back to the rehab center the next evening, I was told that the Director wasn't on site but that it would be conveyed to him that I needed to speak to him. He didn't come by all the next morning, and that afternoon we went for Dad's first appointment with the oncologist, after which I had to leave to go home so I could go to work the next day. After a round of phone tag the following day, I finally got him on the phone, and he told me that the team had presented the plan for a 3-week long stay to Mom and Dad and they'd agreed. I was stunned that the rehab team had met without input from my family; they hadn't asked any of us the first thing about how my parents' house was structured or what my dad hoped to be able to do when he was discharged. He insisted that with the extra time Dad would be “much more likely to achieve the team’s goals of supervised/modified independence,” which in rehab terms means that a person goes home able to take care of himself with special equipment (like a walker and a shower bench) but would need another adult to be nearby in case he needed to ask for assistance. He told me he planned to go over the specifics of the goals the therapists had set for Dad (goals that were set without any family input), and that he would meet with me when I was at the rehab facility in a few days.

I see that conversation now as almost brainwashing; I am no sucker, and, like the rest of my family, I was fierce in my effort to do what was right for Dad, but somehow the guy convinced me that he was right. Maybe it was because I was totally sleep-deprived and stressed-out, maybe it was because I presumed that given his position he was experienced and knew better than I did, maybe it was of the belief that I had that people were there to help us in our time of need without an agenda of their own. Maybe (maybe even likely) it was part of the bargaining process that my family was willing to participate in: if it took having Dad stay at rehab for longer to get him back on track, of course that's what we would do! Maybe it wasn't even that the plan to have him stay longer was wrong; certainly, though, from my current perspective, the way the plan was developed and presented to us was absolutely not right, and, even worse, the quality of the services and the assistance that we were provided as part of that plan was far from adequate, both in my personal and in my professional opinion.

We were also in the midst of dealing with meeting Dad's needs around the clock and with the huge paperwork demands for legal things like getting medical power of attorney and financial things like checking into filing for disability and follow-up things like filling in the 10+ pages of detailed information required to get Dad into the Duke program. Everyone in the family who was involved in Dad's care wanted to do what was best for Dad, and it was easy to believe that the plan proposed by the rehab team was just that. And so we threw ourselves into doing what we thought was based on what we thought was their expertise; we agreed that Dad would stay at rehab for three weeks, and we voiced our mission over and over to the staff that in that amount of time we wanted to have the house set up for Dad, any necessary equipment in place, and all the follow-up services lined up so that when we left there, we were 100% ready for whatever was coming next for Dad.

Besides the plan for the length of time Dad was to be at the rehab hospital, though, there were other issues that I also felt (and still feel) were being mishandled. I sat in on several therapy sessions with Dad while he was there. With my rehab background and having spent so much time with him since the onset of his illness, I knew what his deficits were; I also knew about brain injuries and about what the point of doing certain activities as part of the therapy sessions were - but Dad didn't know either of those things. Pre-cancer, he didn't, and certainly in the midst of everything, he didn't, and it was part of the job of the therapists to try to inform him of those things. As I've mentioned, Dad detested inefficiency; he used to comment to me that he thought "all of these new-fangled training programs for runners are just money-making schemes," and then he'd add "Here's the real secret to becoming a better runner: RUN MORE!"

And so it isn't hard to imagine the frustration, the boredom, the feeling of stagnancy that he must have been feeling when the therapists asked him to do things like matching cards and sorting little trinkets into piles, doing word searches and recalling random words called out to him, and performing leg lifts ("With no weights AT ALL?" Dad incredulously asked the PT the first time she told him to lie on the mat and lift each leg ten times.) and going up and down the make-shift set of wooden steps in the middle of the therapy room ("Steps to nowhere," Dad muttered prophetically as he went up and then down the stairs again and again as part of a PT workout.) Dad didn’t see the point of many of the activities; he thought they were a waste of time and childish, and in many cases, I didn’t disagree. It’s hard to be motivated when you don’t see the point, and the point is much more unclear when a person has suffered a brain injury. Over the course of the time Dad was in rehab, I watched him go from being fairly upbeat and ready to face his charge, to being openly bored and confused about the point of things, to being aggravated and resentful during his therapy sessions.

But still he tried his best, each and every time he was asked to do an exercise or a task, even when he didn't feel like it and even though he didn't see the point. The couple of times he requested that a therapy session be cut short, he later made up for it by doing extra repetitions and by asking one of us to quiz him on something; he seemed to think that by doing "homework" he would get to go home early. But again, the payoff from doing the work wasn't as deserved; not only did Dad not get discharged early, he didn't make the progress we had been assured that he would.

Believe me, I know there are know guarantees in life; I knew it then too, from a professional standpoint more than anything: sometimes a person can put forth 100% effort in therapy sessions and still not meet the goals that have been set. However, what I also know is that it is the responsibility of the rehab team to reassess and regroup whenever necessary, and, if independence doesn't seem to be in the cards at least at that point for the patient, it's their job to make an effort to set that person up with adaptive equipment, follow-up services, and support so that the goal of working towards ensuring safety and some degree of satisfaction on the part of the patient is achieved. That part is something we as health care workers can control, the follow-through and the empathy and the compassion, even if they technically go beyond the spectrum of our job description.

Besides having Dad get better through therapy sessions while he was at rehab, our second goal for during that time was to have a social worker or someone like that to help us coordinate everything that was going on. Mom and Dad first met the Case Manager on Dad's fourth day in rehab when she came by Dad's room (not great when you consider we were originally only planning to be there for a week); she told them she would help with any legal paperwork and also with coordinating services that would be needed after discharge. She said that the team would meet the following week to decide how much therapy Dad would need after he left rehab and whether they recommended he be seen for therapy at home or in a clinic as an outpatient.

After that, I tried to contact the Case Manager by phone but kept getting her voice mail and did not get a returned phone call despite leaving repeated messages. Several times when I was at the facility I went to her office and left messages with the nursing staff that I needed to talk to her; I recognized the urgency of getting the ball rolling for after-care services and supplies, and I was shocked and angered as it became more and more apparent that the Case Manager not the rest of the staff there either didn't see the importance of it or - worse - they just really didn't care. I called it "watching the Cancer Channel;" these people evidently were just find with putting in their 8 to 5 and then going home without another thought about their patients - if they aren't at work ("watching the Cancer Channel"), to them, Cancer isn't real, it isn't happening, it isn't their concern.

Over the weekend, therapy services were sparse despite the fact that we had been told before admission that patients like Dad who were there for short-term stays would get 6-7 days of therapy per week. Dad was restless and bored; for him, there was pretty much nothing to do except wait for the time that he could go home to come. For us, though, there was a seemingly endless list of things to do. One of those things was installing grab bars and getting other adaptive equipment like a shower bench set up at my parents' house.

I asked for advice from the therapists at the rehab center on this but was told we should "wait and see," an approach that seemed to us to be at best unreasonable or lazy and at worst careless or reckless. I consulted with my physical therapist and occupational therapist friends - most of whom are pediatric therapists like I am - and then I used my friend Google to try to figure out at what height to mount the grab bars. Because the therapists at the rehab hospital couldn't/wouldn't (what's the difference?) give us names of contractors or home health therapists who could install the equipment, my husband and my brother-in-law installed grab bars in the bathrooms by the toilets and in the shower, rolled up throw rugs for safety when Dad used the walker, and rearranged furniture to make the house more accessible. If we couldn't find help to climb Mt. Everest, by DAMN we were going to work together to climb it anyway.

The days of therapy sessions were peppered with unexpected cancellations and rescheduling of therapy sessions for reasons that were not always explained to us, early morning wake-ups by the staff for deliveries of breakfast trays and medications ("The day shift gets mad when they get here at 6:30 a.m. and we haven't gotten all the trays and the meds out to the patients yet," one night-shift nurse told me when I asked about the earliness of the delivery. "Wow. Just wow," I thought, as I gritted my teeth and told myself and Dad that we just had to stick it out a little longer and then we would control our schedules for things like that.). Somehow the speech therapy services got switched over to being provided by a student speech therapist, a young girl who was nice enough but obviously lacked the knowledge and experience that we so desperately needed and expected. (Maybe they should've had the student provide extra sessions of speech therapy for Dad, for free, instead of billing us full price for her sessions as we later discovered they did.)

For probably a variety of reasons, Dad's progress was slow and inconsistent. I wanted to believe that it was because of the lack of sleep and/or the persistent headaches and pervasive fatigue that Dad suffered from, as much as at this point I want to not feel as upset and full of blame -deservedly or not - as I do towards the staff at the rehab center.

On the morning that we began Dad's last week in rehab, a nursing aide helped Dad into the shower and then stepped out of the bathroom for a couple of minutes, during which time Dad got up from the shower bench and tried to use his foot to dry water on the floor with a towel, which resulted in his falling. Luckily, Dad wasn't hurt, but the fall highlighted the fact that there had really been no improvement in his safety awareness since he had gotten to rehab.

After this incident, I called the rehab director to assert that Dad should not be left alone, even for a minute, and to inquire again about getting recommendations and orders for things that would be necessary after discharge, including home health equipment, a handicapped parking permit, outpatient therapies, and insulin training. No one in my family ever heard back from the social worker, the woman whom we had been told was our Case Manager. Eventually we caught on to the very obvious fact that the onus was on the patient’s family to figure out what needed to be worked out before the patient went home. I thought it was absurd that we were the ones having to make a list and chase down the support we needed; I shutter to think what would have happened otherwise.

After being asked at least a dozen times by my family when Family Education Day would be held so that as many of us could schedule to be there as possible, the Rehab Director informed us that the training would be two days before Dad was discharged. We told him that was going to be tough to work out for most of Dad’s family; we were all traveling from other cities and were piecing together what needed to be done in between working and taking care of what needed taking care of on our own home fronts. He said that there wasn’t another option available for this, though, and so I took the day off work and went to the training. During the training, I inquired about getting an order for a wheelchair since Dad was unable to cover long-distances without totally wearing himself out. I asked AGAIN about insulin training and seizure training, and I brought up my continued concerns about the need for emotional support. To all of it, we were told that the recommendations would be given to us in the discharge paperwork, which we’d be given when Dad was on his way out the door.

At last, though, the day of discharge for Dad came, and we were able to take him home to his house, which had been set up to meet his needs, no thanks to anyone at the rehab hospital. We called and made an appointment for someone from a home health agency to come to the house to go over what types of services we could get for Dad, and it was decided that he would get OT, PT, and Speech Therapy at home.

Right away I asked if the therapy sessions could be set up on a consistent schedule; it actually shocked me when I was told no, that the therapists each handled their own schedules, and after a week or so of dealing with them coming in and out of the house throughout the day, it became clear that we were once again at the mercy of a group of people who either just didn't get it or just didn't care. It was of great frustration that the therapists did not seem to coordinate with each other at all and that they appeared not to even consider the sleepless nights that were going on at my parents’ house or the desperate need for routine for Dad and Mom and those of us who were there to support them. As with the therapy staff at the hospital and at rehab, it soon became apparent that they had little to no experience with working with patients with brain tumors; they tended to treat him more like a stroke patient, and those two things are vastly different.

One day the PT came at 8:00 a.m. (an hour after Dad had finally gotten to sleep from the night before!), the OT came at 11:30, and the Speech Therapist came at 3:00, thus thwarting any type of bid for a nap or for venturing to Sonic for a large Diet Coke, Dad’s main pleasure for the day on many days. The next day, the therapies were at 9:30, 1:00, and 4:00. There were lots of last-minute schedule adjustments and some cancellations by the therapists, too. The only consistency from the home health agency was the inconsistency. Therapy was hard for Dad; he wasn’t the Road Warrior/gym rat that he had been for 50 years before. He tried to get on the recumbent bike for some extra exercise some days, but mostly he just tried to tolerate the sporadic visits of the therapists and a select few other people who stopped by as he fought off exhaustion.

Thinking I could tie Dad’s love for swimming in with his distaste for the mundane Physical Therapy sessions, I called around looking for a therapy clinic with a pool, but I was told time and time again that Dad didn’t qualify due to ambulation limits and the possibility of seizures. I'm not so sure that the reason they wouldn't even consider taking him on as a patient wasn't liability; none of them were even willing to meet him much less try to figure anything out that might help us.

I was taught in OT-school that goals for therapeutic intervention should always be based on what the person wants to do; I don't recall even once while Dad was sick having a health care professional ask him or any of us what he liked to do or what his goals were. He would've said going to a Grizzlies' game, going to the movies, going to Barnes & Noble, maybe even being able to walk his dogs around the block. I can't for the life of me figure out why those things weren't addressed by those therapists, why they seemed to think it was just fine to have Dad work on stacking cones, squeezing a ball, and doing leg lifts instead of at least trying to focus on things that mattered to him. My family was doing what we could to facilitate the things like that that were on Dad's Revised Bucket List, but it would have been nice to have some help. I've taken kids to the circus, to McDonald's, and to a playground as part of therapy sessions in the past; I don't see why Dad's therapists didn't see the value in making the effort to support Dad's objectives.

And then, the icing on the cake came: the day before Dad was scheduled to get an MRI to see how the treatment was going, he fell in the den and couldn't get up. My sister Jennifer was there with him and tried for over an hour to help Dad get up; by sheer luck, Dad's swim coach and friend Ashley showed up and was able to help Jennifer get Dad up and into the a chair.

After Ashley left, the OT came for a previously scheduled therapy session. Jennifer told the OT what had happened, but he really didn't seem to get it. He had Dad do some hand exercises from the recliner. Jennifer asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed. The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak. They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom, at which point the guy hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.

Looking back from this vantage point to the time while Dad was in the rehab hospital and to the time he spent in the home health therapy sessions, I have to say that it was a complete waste of his time. It makes me feel ashamed to be part of a professional group with some members who choose not to go the extra mile, or possibly even not to fulfill their job responsibilities - or, taking it even one step further - even to step up to help a fellow human being. My family was desperate to find a way to help Dad to get better, or failing that to make accommodations for him to help preserve his dignity and his enjoyment of the time he did have left; we truly felt that we were fighting for his life, and we desperately needed help from someone who could do something to help us in that fight.

This was taken on the last trip my family took together before
my dad's illness, less than two months before his diagnosis.

About two and a half years after my dad's death, I changed jobs. After almost two decades of working as an occupational therapist in a large school district, I moved over to the world of academia, joining the faculty at a university in the heart of the city in which I live.

I continue to provide OT services for patients, but now a large part of my job also includes helping to shape the education – and the perspectives – of future occupational therapists. I weave into what I teach many of the things I learned as a result of what my dad, my family, and I experienced after his diagnosis of brain cancer. I feel compelled to impress certain things on the group of fledgling healthcare professionals before they enter the clinical arena, in hope of maximizing the positive impact they will have on their future patients and the families of their patients. In the medical world, these tips are sometimes referred to as “clinical pearls.”

I think there are a lot of lessons for the OT students to carry forward into their interactions with patients from things I saw (or didn’t see) when I was with my dad while he was in rehab. On one such occasion, the occupational therapist came to my dad’s room and escorted us to the rehab gym, where she set him up at a big table. She brought over a bowl of many small items which she dumped onto the surface in front of him, and she instructed him to use his left hand to sort the items into piles according to their similarities. Before Dad could get started, she turned around and walked over to another patient on the other side of the gym, presumably to check in on that patient while Dad got going on the assignment he had gotten from her.

It was odd for me to be there in that setting as a caregiver instead of a service provider; I tried to make a conscious effort to let the therapist take the lead and not to prompt my dad too much during the intervention. I watched him as he sat in the wheelchair that the OT had positioned at the table. He looked at the stuff on the table for a minute, glanced around the room for a couple of minutes, and then looked at me. “I guess she wants me to clean out her junk drawer,” he said to me in a stage whisper. “If it was up to me, I would just throw all that crap away, but I guess if I do help her she will do something to help me get better so I can go home.”

Of course, I knew that what she wanted him to do was for his benefit, not to help her organize her junk drawer, but what I also knew was that Dad hated junk and that he hated to do things that he saw as a waste of time. The OT had not explained to him why he was supported to perform the task. I tried to explain it to him, but he was way past the point of listening at that point; he just wanted to get done with what he saw as the worthless job she had given him so he could get the hell out of there.

After about five minutes, the OT turned around and saw that Dad hadn’t started on the activity. She came back over to us, and I waited to see what would be communicated between the two of them. “Bill,” she said, annoying me with her assumed familiarity, “What did I tell you to do?” And then I was annoyed with her tone and her attitude. Dad, in maybe the first time in my life that I’d ever seen him do such a thing, offered an excuse to get out of doing the work: “I have to go to the bathroom, and I have a headache,” he told her.

She seemed all-too-eager to take the bait. “Oh, no problem,” she told him. “We can go back to your room so you can use the restroom in there and then you can take a break.”

“Take a break from what – sitting on the sidelines with a task he sees as a complete waste of time while you chat it up with another patient??” I wanted to yell at her. I knew what Dad was doing, but I also knew from past experience since he’d been sick that if I started raising a stink it would either embarrass him or scare him or both.

I tell this story to the OT students now because I want them to see the big picture in the interventions they provide for their patients. “Always connect the dots for the patient and for their caregivers,” I tell them. “Don’t leave them to wonder why you are asking them to do something. Talk to them about what their priorities are; explain the purpose of the activity and clearly identify what the patient will gain by putting forth effort in the session. Find out what their carrot is - what motivates and interests them - and incorporate that into your treatment plan.”

There are many other clinical pearls that can be taken from this story, too, lessons that I think are important for healthcare professionals to know. Through telling stories about people with injuries or illness like my dad, I hope to cultivate the compassion these students have so that they are able to connect the dots to effectively serve the needs of their patients for many years to come.

Chapter Ten, Part 8: Saying Goodbye

2016-05-17T10:02:00.001-05:00

The time our family had while my dad was on hospice was intimate and special. We’d spent what time we could together and had taken every opportunity possible to hoard all of the good memories we could while he was sick, and having those last few days to care for him in the peace of my parents’ house and to be with him just a little longer was something for which I will be forever grateful.

Dad was the leader of our family, and he led us through this too, showing us the way. We kept vigil, waiting for what we knew was coming but what we so didn't want. Dad waited too. Maybe he was ready to die, but more likely I think he was just ready to be done with the suffering. By all accounts, he waited as long as he could for us to be ready. I’ve heard it said that sometimes people who are dying can control the exact time that they go; I believe with everything that I am that this was true for Dad, yet another display of just how strong he was, of just how much he was willing to sacrifice for his family, and of just how much he loved us.

As the sun came up on the morning of January 5, 2011, Nancy, Mom, and I sat around Dad’s bed, taking turns holding his hand and talking softly to him. I knew in my heart that he was holding on with every bit of determination he could muster. It was obvious to us that he was waiting for something. As the sunlight poured into the window, my mom, realizing the date, told my dad, “You made it, Bill! You’ve made it to January 5^th.” Five was Dad’s lucky number, as anyone who knew him well knew, and we thought it would comfort him to let him know that it was the fifth. I knew that as much as it must have hurt Mom to give him the permission that we knew he needed to go, she did it because she knew he needed to hear it and because she loved him so much. I told Dad that Jennifer was on her way and that she would be there late that afternoon. He didn’t respond, but I knew he heard us, and I knew he felt he needed to wait.

Over the course of the next few hours, his extremities began to get cold to the touch and, by late morning that day, his heart rate was up, his breathing was raspy, and his skin color was changing. We knew he was not going to be able to hold on much longer, but, as well as we knew him, we knew that he would do everything he could to wait for Jennifer.

As you would expect, there was a lot of crying that day. We weren’t just crying in anticipation of the loss we knew was coming soon; we were crying for the loss of things that Dad had experienced in the ten weeks since his diagnosis, for the pain and anger in our hearts, and mostly for the time in the future that we would miss spending with him. My aunt and uncle came over and brought food for us; my uncle said a meaningful prayer over Dad and then they said their goodbyes. Mom, Nancy, and I each spent time alone with Dad, lying with him and talking to him, each of us promising him that we would take care of the others because we knew that’s what he was most worried about.

My other aunt picked up Jennifer at the airport and delivered her to my parents’ house as promised late that afternoon. We had about five hours together after she got here. We each had time to lie in the bed with him and talk to him. He fought right until the end, and saying goodbye was the most difficult thing any of us had ever done.

During the time I spent alone with Dad that day, I thought back to the dreams that he’d had while he was in the hospital, dreams he later told us about and in which he was so scared because he thought he would be lost and we wouldn’t be able to find him. I so did not want him to be scared or to worry like he had in the hospital; I told him repeatedly that day that it was ok to let go and that he did not have to be afraid because we would know exactly where to find him and we would always have him with us in our hearts. I believe he needed to hear those words, and I believe that he heard me.

When we realized that his breathing had changed, we knew it was time. Our cries rose like sacred smoke, mournful and sad, with each of us doing our best to support him by telling him that he had finished the race and could go on ahead while knowing in our hearts that we would give anything – except requiring him to live in misery – to keep him with us. The moment we were waiting for had finally come, and Dad was released from us. Into the stunned silence, Jennifer said, “Is that it?” and the hospice nurse nodded her head as we cried and tried to convince ourselves of the reality of what had happened. After about a minute, Dad gasped one last time, fighting to the end. We kissed him and tearfully told him we loved him as his body quieted. It was, by far, the most emotional moment in my life. My dad was the most vibrant person I had ever known, and I knew I was so lucky to have had him as such an influence in my life, but, in that moment, there was only sadness, and emptiness, and a sense of utter purposelessness and loss.

What I have known for sure from that moment on is that no matter how many days, weeks or months you are aware of an illness, no matter what the doctors have said, and without regard to the changes you have seen the illness cause in your loved one, you are never truly ready to say goodbye. I realized even in that moment that I was going to have to work harder than I ever had before to gain perspective that would hopefully keep me afloat and eventually pull me through and, ironically, I knew that my dad was the one who throughout my life had given me that perspective.

Pictures that were on the wall in my parents' bedroom

After we had made the necessary phone calls and things had settled down, we took turns sitting in the bedroom with my dad while we waited for the head hospice nurse and then later the people from the funeral home to arrive. As I sat in the room, I – a person who considers myself to be relatively unafraid and someone who is able to witness most any medical procedure or gruesome detail – struggled mightily to hold myself together. I found that it was so difficult for me to look at his body, so small and pale in the bed, but I didn’t want to leave him in the room alone. I sat on the edge of the bed and looked only at the photos of him that hung on the wall. I made my voice tell my mom that I thought Dad should be dressed in jeans and a running shirt and running shoes. He had always looked so handsome in a suit, but that wasn’t really him. Of course, none of this seemed like it was really him or me in my mind, and the only way I was keeping from completely losing it was to let myself think that none of it was really happening at all. I desperately wanted to find a way to reach back in time and pull him back, all the way back to before whenever it was that the first cancer cell had started to grow. But I knew that I couldn’t. I was sick to my stomach, and I was engulfed by sorrow. After awhile, I went upstairs and, for the hundredth time since the diagnosis came on October 23, I called my husband and cried so hard that I thought the phone would short out with him on the other line.

We knew that Dad would no longer be where he was after that night but that he would always be wherever we were. He wasn’t going to be lost; we would know just where to find him, and that would be in our hearts. That belief, and the thought that Dad wasn’t having to endure anymore, was the only thing keeping me from coming completely undone.

We called my aunt, and she came over with a bottle of wine; none of us knew what to do or how we were going to get through the night, through the days ahead, or through the future without Dad. While the hospice nurses were in the bedroom with Dad, we sat in the den and had a surreal conversation about funeral plans. (I kept hearing “This isn't really happening” in my head, and I’m pretty sure there was some screaming going on in there, too.) For as long as I could remember (WAY before he got sick), Dad had said that he wanted to be cremated and that he wanted a celebratory memorial service to be held after he died. He had brought these topics up in conversation many times over so many years that we had just accepted them as not really being morbid or sad; we just looked at those wishes as being a part of Dad’s personality. For as much as he loved winning a race and dancing center-stage at each of our weddings, he was very modest and didn’t like being “gawked at,” at he put it, and therefore an open casket or a big funeral service was not what he wanted. And with his positive attitude and fun-loving personality, it was no surprise that he had stated his preference was for a celebration of life instead of a more traditional funeral. Again, we followed his lead, and the plans were put in motion.

When the people from the funeral home came, Nancy and I sat upstairs; we could hear what was going on downstairs but we couldn't see it. I knew I would not be able to bear seeing his body taken from the house. There were more tears, and paperwork my mom had to sign, and then more tears when that was done and my aunt and then the hospice nurses told us goodbye.

So much had happened over the course of that day and night; the shock and sadness of it all was almost crushing. When I think about how my mom and my sisters and I went to sleep that night, I am sure the only way we did it was out of shock and sheer exhaustion, and mostly the former. I remember that I was bone-tired, but I had trouble sleeping. I somehow simultaneously felt like I had no energy but I also had restless, unfocused energy since I was not physically tending to Dad any longer. I felt helpless and hopeless, and so much more; mostly, though, I felt lost.

After a few hours of sleep, we woke up and made phone calls as we drank coffee. Mom called the funeral home and was told to come in that morning to make the arrangements. We quickly got dressed and got into the car. As we drove along the winding road, the same road that I had driven on with Dad when I was taking him to Sonic and listening to him sing Christmas songs just a few weeks before, I found myself getting angry at the obligations that I felt were pressing down on my family that day and in the days to come. I thought about how odd it is that family members are expected to plan an important event (“to make arrangements”) when we are at our most vulnerable, in shock. It seemed ridiculous, yet here we were, on our way to doing what was expected, mostly because we didn’t know what else to do.

When we got to the funeral home, the funeral director started things off by telling us that we couldn’t have a graveside service until after that weekend (even though it was only Wednesday) because they were backed up from the holidays and wouldn’t be able to complete the cremation process right away. As I sat there processing that information. Jennifer said angrily, “I am so sick of the ‘holiday’ excuse! We couldn’t get our dad what he wanted to eat on Thanksgiving Day because it was a holiday, he didn’t get the medical care he needed in the hospital because of the holidays, and now this??” The director apologized, but, just like the other things that couldn’t happen due to the other holidays we’d had while we were coping with Dad’s illness, it was what it was. The funeral director said they needed to have the information for the obituary right away so that it could run in the newspaper the next day, which we felt was important so that notice about the memorial celebration we were planning on the following day could be included. We started off trying to dictate our thoughts to the guy, but after a few minutes of watching him struggle to keep up with the many thoughts and emotions in the room, we convinced him that it would be better if we used his computer and just wrote it ourselves. With that done, we finished up with the “arrangements” (a term I was growing to detest more by the second), and then we drove back to my parents’ house, exhausted again.

Sitting on the couch in my parents’ den that afternoon, I could see my dad's car keys still on the dresser by the back door, and I felt like I might suffocate from the sadness. His bike was in the garage, ready to be ridden; his shoes were piled in his closet, ready to be worn; his to-do list was on his desk in his office upstairs with items still to be crossed off … but he wasn’t there. The anguish in my heart was palpable.

My brother arrived from out of state that afternoon, and my husband and my daughters got in just after that. Together, we made it through that night, and then we got up the next day and waited for the rest of our family to arrive. Just before Jennifer's husband and her children got to my parents’ house, a beautiful rainbow appeared in the sky, a comforting sight that made me smile through the stream of tears I had going. My cousin, who owns a restaurant in Nashville, coordinated the memorial service, which was to be held at her restaurant, and she and I texted back and forth to iron out the details. That evening, Peter set about creating a digital slideshow of photos to show during the memorial celebration, with contributions and suggestions from the rest of us about which pictures to include and what music to use for the show. We took turns holding it together and, well, not holding it together, and, as it had been while Dad was sick, somehow it worked as a group effort.

Mom and I decided to sleep in the master bedroom with the kids that night. The slideshow creation and the supportive “togetherness” (Dad would’ve called it“binding”) continued after we had turned in for the night; in fact, as I discovered the next morning, because Kevin was the only male in the family with a full head of hair, the late night activities even included shaving his head in tribute to Dad and so that if Mom needed anything during the memorial service she could scan the crowd and look for a bald head.

From left: my BIL David, my newly bald husband, my BIL Peter, and my brother Lee on the day of the memorial

Somehow we made it to the memorial service on time; we had asked my aunt to bring boxes of tissues in case those were needed, but we’d forgotten to get a guest book for people at the service to sign. My sister-in-law Sheila dashed out at the last minute and bought one, just one of many things that seemed oddly important that day as we went through the motions like we were in a dream.

The memorial service was a great tribute; we were touched by those who attended and by the words of love, respect, and gratitude we heard from so many people that day. Did it matter how we handled the memorial service? I thought. Did it matter what I wore or who came? Really, nothing mattered, except that I was together with my family, but it helped a little bit to have others who cared about my dad and about me and my family surrounding us. Did I understand why some people whom I felt would come to the service didn’t? No. Really, I didn’t understand anything that was going on or that had transpired over the past ten weeks. I didn’t understand it, and I didn’t want to. I just wanted to cry, and maybe even to crumble. But I couldn’t, and I didn’t.

This is what someone said to me at the service: “The highest tribute you can give is not grief but gratitude.” I appreciated the message, and I understood that the meaning was that I could best pay tribute to the man I loved so very much by being strong and by moving forward. What I didn’t understand at the time was just how tough grief is, and what I didn’t know was how profoundly it would change me.

Chapter Ten, Part 7: Being Called Home

2016-05-17T09:58:00.001-05:00

Even more than I had hoped it would be, having a crisis nurse from hospice at my parents’ house around the clock was a relative bonanza for my family. It took some of the uncertainty and the heaviness out of the situation and freed up my mom and later my sisters and me from focusing on the medical care needed so that we could settle into our roles in our family, as it was, one last time. It was such a relief to have the two crisis nurses that came – one from 7 p.m. to 7 a.m. and the other from 7 a.m. to 7 p.m. – there to provide their expertise and to support and care for us as well as for Dad. For the first time since Dad had gotten sick, we didn’t feel the entries in the Notebook were necessary; in spite of the fact that we had spent so many days with medical staff all around us when Dad was in the hospital and while he was in rehab over the past ten weeks, it was the first time we really felt that someone other than one of us was up to the task of taking the reins in his care.

Around noon on Tuesday, January 4, when Mom called to tell me that the hospice nurse had advised her to call to let us know that we needed to come home as soon as possible to be with Dad, she said, “This is the hardest call I’ve ever had to make, calling you all home.” Through the fog of tears, desperation, and (still) at least a little bit of disbelief, though, I was grateful for the chance to come and for the chance to get to be with Dad again; somehow even then I had the perspective that the message of that phone call could have been worse.

On the road to my parents’ house that day, hope and denial were still so entwined for me, although the goal of both had obviously shifted. My hope was that peace and comfort would be able to be provided for Dad and, truth be told, maybe even that he would need me one last time to play a role in that provision.

I had read in some of the material the hospice nurse had shared that a person who is dying may sometimes wait for certain people to be with him before he goes on ahead and other times he may wait to be alone. As much as I selfishly wanted to spent every last bit of time that I could with Dad, I told myself that, just as had been my family’s mission during the course of Dad’s illness, I had to be prepared to do whatever it took to care for Dad, no matter what that meant.

I remember having to consciously force myself to stay in the moment and to focus on the act of driving on the way to my parents’ house, but I don’t remember what I thought about on the trip. Denial was really what served as the vehicle that got me to my parents’ house that day; it was the glue holding me together so that I could function at all. Hearing my mom say that time was very limited, that we needed to come home was like watching the last drop of glue being squeezed out of an already almost-empty glue bottle.

I parked in front of their house and walked up the steps and in the front door, almost like it was a normal day. I quickly hugged my mom and then went into my parents’ bedroom. I saw my dad lying in the hospital bed – it looked like him, but it didn’t. I could see the outline of his body underneath the blankets on the bed, and I could see his chest slowly rising and falling in a slow rhythm. The true vulnerability of his life could be felt in the room. A startling thought popped into my head: “This life as we know it is going to end before I am ready. We’ve made it here, and I will do whatever it takes to take care of him, but I will never be ready.” I remember the complexity of the emotions that were present in that moment, and I can still feel the numbness and the intensity that were so intermingled I could hardly breathe.

I couldn’t really believe it, but here we were. Everyone had had such faith that he would beat the odds, and I was still surprised – shocked really - that his body that was so strong could not take it. That we had gotten here this fast, or at all. That we weren’t going to be the ones to beat the odds. As I sat down in the hard chair beside the bed and took his hand in mine, I reflected back on the words that Dad had said repeatedly over the last few days when he was in the hospital: “It’s just too much.” He was right – despite his best efforts and those of the people who loved him, the cancer and the treatment were just too much. What was happening was too much, and so was the grief, already. Unimaginable, even in the moment. All that was left to do was just to be there with him, to hold his hand and talk to him even if he couldn’t do that back anymore. I am not a touchy-feely kind of person, but, when there was no longer any need to get his favorite foods for him, when there were no doctor visits to schedule, no errands to run, no in-depth discussions to have, and no treatments to seek out for him, using touch to comfort and care for my dad was what I instinctively felt like doing. Based on his reactions from over the past week or so, we knew that much physical contact or noise would likely cause him discomfort, and so again we followed his lead: we didn’t move him in the bed except when absolutely necessary, we didn’t play music, and we didn’t turn the TV on. For our comfort and hopefully for his, we took turns lying next to him in the hospital bed or sitting right beside his bed and just holding his hand, sometimes talking to him, sometimes not, seeking that connection and doing what we could to let him know that he wasn’t alone.

Mom had called my siblings at the same time she’d called to tell me to make my way to my parents’ house; Nancy left work and arrived not long after I did [she actually got a speeding ticket on the way there; not wanting to spend extra time explaining and probably as part of the cloak of denial she was wearing too, she took the ticket from the officer and got right back on the road without mentioning a word about the reason for her speedy driving], and Jennifer, two thousand miles away, booked a flight that would leave the next morning. Our brother Lee, who lived 800 miles away, planned to fly in the day after that.

Marilyn, the crisis nurse that day, quietly alternated between writing notes in the chart, gently checking Dad’s vital signs, and efficiently administering medications to him, which were all being given in liquid form at that point due to swallowing difficulties. She was very skilled and very kind; she reminded me of a woman with whom my parents had been friends when I was a child, which seemed comforting. She asked if we wanted to be alone in the room with him and then considerately stepped into the kitchen for a while when we said that we did. While Nancy and Mom sat with Dad, I followed Marilyn into the kitchen and asked her, “What can I do?” I think I meant for Dad, but maybe I meant just in general. I felt restless and so completely useless. For all that there had been to do during the rest of the time Dad was sick, I was at a loss for what to do now. Marilyn folded me into a hug and then she told me: “You need to reassure him.You have to tell him he can leave when he needs to.” Oh, god, how I didn’t want to hear those words, but I knew she was right. I tried to steel myself for what I knew had to be done and what I knew was going to happen.

A little while later, as I sat quietly with Dad, I thought back to less than a week ago when decisions and plans were hanging in the balance and when Dad, in the meantime, was barely hanging on. Late in the night on one of the last nights he was in the hospital, he brought up the subject of dying again, this time in reference to a dream he’d had when he was in the ICU a couple of days before.“It was so scary!” he said, and then he replayed the dream for us. In this one, he and several other people were hanging onto a wire by their hands. A man he didn’t recognize was going down the line of people counting, and everyone in the dream knew that if the man called out an odd number when he came to a person that that person would be dropped from the wire and would die, but if he called out an even number, that person was spared. Dad said he was so scared that he was going to be “counted with an odd number.” He said he held on so tightly to the wire because he didn’t want to die because he was so afraid that we wouldn’t know where he was or how to find him if he did lose his grip.

Sitting with him in his bedroom as the sun started to dip below the horizon outside my parents’ bedroom window, I told my dad that he would never be lost. I promised him that I would take care of Mom and Grandmom and my siblings and that we were so thankful to have had him to pull all of us together as a family. I carefully put my head on his shoulder, and I said, “You can go. But you have to come back to me!” Immediately after those words had left my mouth, Dad started stirring in the bed, moving around and kicking the covers in an agitated fashion. Instantly I knew without a doubt that he’d heard me, and I was ashamed of the selfishness behind what I knew he thought I was saying. “Oh, Dad,” I cried, “I know your body can’t do it anymore. I know you are doing everything you can to stay here with us, but it’s ok if you can’t. You’ve finished the race; you’ve done everything you needed to do, and we will be ok.” He settled down again, and I just sat there, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear that too. I wanted to tell him that what I’d meant was that I hoped he could try to send me a sign, to come and be with me and the rest of the family later, in spirit, but I didn’t tell him that; I didn’t want to cause him any more distress, and so I told myself that he would do it anyway, without being asked, if he could find a way after he’d gone on ahead.

Sitting there with him in that room, holding his hand and watching over him: it was almost an out-of-body experience for me. Who is this lying so helpless in the bed – it’s not my dad who was so strong, so active, and so full of life. Who is the girl crying and telling him that she will be ok without him – that doesn’t seem like me, I’m the girl with the pigtails climbing trees or running alongside my dad, and I'm not sure it's true. It didn’t seem possible, or real.

But it was real, and time was marching on. The night-shift nurse came to replace Marilyn. As the night wore on, Mom, Nancy, and I decided to take turns trying to sleep. It felt odd yet also comforting to have the night nurse watching over us. Lying with Dad that night, halfway in the hospital bed and halfway at the edge of my parents’ bed, I tried to focus just on Dad’s breathing, but my mind was racing. I kept thinking about how the many things that usually seemed so important, so urgent, really weren’t at all. It was the air, breathing, and being together with those we love that were paramount. I just wanted to hold onto that togetherness for as long as I could, but, even as I drifted in and out of sleep that night, I knew all of that was out of my control, and I felt completely helpless.

When I think back now to that night and to the next day, which would be Dad’s last, I remember him as being so very vulnerable and defenseless. Before my dad had gotten sick and before I’d watched his valiant efforts during the time he was sick, I thought those things implied weakness. But, over the course of the past ten weeks, I had come to understand that it takes true courage to be that way without resentment and rage. In the end, Dad, with his kind heart and his trusting nature, folded himself into our arms, and that, along with holding on, was his final gift to us.

Chapter Ten, Part 6: I'll Love You Forever

2016-05-17T09:56:00.000-05:00

I’ve heard it said that in some cases when someone is dying he can exercise some control over the time that the going on ahead occurs; the person might have been waiting for something like a chance to finish something, he may need reassurance that those he is having to leave behind will be ok, or he may be holding on until a certain date passes or until certain people are present.

I think all of these things were true for my dad and that, for as out-of-control as things were during the course of his illness, he was somehow about to commandeer every last bit of strength he had so that, although he couldn't stop what was happening, he could control the timing of things. I think he needed to check some things off his list, not for himself but for us, and I have never admired anyone as much as I do him for the sacrifice, persistence, gallantry, and dedication that it took in order for him to achieve this.

On the first Monday of 2011, the hustle and bustle of my parents’ house had dimmed, with only my parents and Nancy and David there as the sun came up that day. There had been almost constant activity, things to do, and caregiving responsibilities since the second Dad had gotten sick. It still seems odd to me on some level that when his conditioned worsened, when he had gotten to the place that was obviously near the end of that illness, there was actually less for us to do for him. We were still reeling from the shock of the decline, and thus there was a sense of confusion and conflict within all of us. Each of us, whether we were physically in the house with Dad or not, strangely had some leftover energy but were at the same time almost completely drained. Pacing the floor didn’t help, and neither did surfing the Internet for new ideas of things that might help Dad as we had been. Talking didn’t help and really, among each other, it wasn’t even that necessary; without using words, we knew the pain that each of the others of us was feeling. As different as we are in personality and in the exactness of each of our relationships with the man we so loved and so still wanted to save, we felt the same blows, the same sense of aching in our hearts, the same feeling of torment as we were realizing that we could not.

Mom, Nancy, and David had split the night shift with Dad, and after she showered and dressed for the day and came back into the bedroom to sit with Dad, Mom leaned over and kissed him and said, “Happy anniversary! I love you so much!” Dad, who had been lying so still and so quietly in the bed for many hours, opened eyes and looked at her adoringly and then said, “I’ll love you forever.” Tears followed, as they still do for me even now when I picture this scene in my mind; we were so sad and yet so grateful that he had made through to their 43^rdanniversary, and we were so touched by Dad’s efforts to convey his final message to Mom.

David and Mom stayed with Dad while Nancy went to work that day. I have no doubt that Nancy was operating on auto-pilot, as was I at my job. It was only due to the shield of the disbelief that any of us were functioning at all at this point, I think.

Dad's case had been primarily assigned to a hospice nurse named Dave, who came to my parents' house mid-morning that day and spent a long time going over the details of Dad’s care with Mom and then gently examining Dad, changing Dad’s clothes and the sheets, all while talking to Dad very compassionately. Dave again emphasized “staying ahead of the pain” with the medication schedule and then said that he would check with Mom again later in the day.

Those of us who were not at the house were anxious and worried; Jennifer and I both spoke briefly to Mom after the visit from hospice that morning, and, although she reassured us that everything was being taken care of there, it was harrowing to feel so out of control and out of the loop. Early in the afternoon, I called Dave from Hospice, who essentially repeated what Mom had told me a little earlier: we were in a holding pattern of sorts. Like the hospice nurse from over the weekend, Dave was making no time predictions, but he did not mince words about Dad’s condition, which, for as hard as it was to hear, I was grateful for the directness of. I told him that I was so worried about the stress of what was going on at my parents’ house, that we were standing by to come back to help and to be with Dad but that, because of the uncertainty of time and what would be needed for Dad on down the road, we just weren’t sure what to do. After we had talked for several more minutes, Dave said that the hospice company could send in LPN’s on 12-hour shifts to stay at my parents’ house around the clock. “We often do that when a family feels they are in crisis,” he said.

I didn’t want to be a family in crisis, but I felt we needed the help or, more specifically, the guidance, the expertise, and the reassurance of someone with knowledge about what to do in a situation like ours. “That would be great,” I told him, and I knew Mom and my siblings would agree. We weren’t usually the type to ask for help, but there was no denying that we were struggling, and, as we had been during the entire course of Dad’s illness, we were willing to do whatever it took to care for Dad. Dave said he would make arrangements for the first shift-nurse to come to the house at 7 p.m. that evening, and I felt a weight being lifted from my shoulders. It wasn’t what we wanted – none of this was – but it was part of our perspective about what needed to be done, part of sticking together as a family, and part of loving and caring for Dad.

Chapter Ten, Part 5: Rose-Colored Glasses

2016-05-17T09:54:00.000-05:00

I once read that all mammals have approximately the same average number of heartbeats in a lifespan. If that’s true, it means that a smaller animal with a faster heartbeat does not live as many years as a human with a slower heartbeat. If that’s extrapolated to people, then a well-conditioned athlete with a slower resting heart rate theoretically would have a longer life than an out-of-shape person with a higher heart rate. Not this time, though: that’s what we learned when Dad got sick and what was at the root of the utter sense of shock and disbelief that everyone who knew him felt first when he was diagnosed and then even more so ten weeks later when he died.

There was no disputing the remarkable physical shape that Dad was in just prior to his diagnosis. I'm not sure of the exact statistics, but I feel pretty certain that only a handful of 67 year-olds in the world can swim 2.4 miles, ride a bike 112 miles, and then run a 26.2 mile-long marathon, all without a break, and that is the distance of the Ironman triathlon in which Dad was set to compete. Dad was well-trained, and he was ready for the race, and that was part of the reason we were so shocked by the diagnosis and by the events that followed.

Besides my dad’s exceptional physical condition, there were lots of things that influenced my family’s beliefs about Dad’s prognosis. Even after the devastating diagnosis with the horrible prognosis was handed out, we had much more of a bias than is typically present about what we thought the outcome would be in Dad’s case because of some specific past experiences.

Hit by a car while running a marathon ... still lucky!

As I detailed at the beginning of this story, my dad had an extensive history of accidents and injuries and even some medical issues that came as a result of his athletic pursuits. More than anyone else I’ve ever known, though, Dad always seemed to have luck on his side in this type of situation (and a little perspective: it’s technically not lucky to end up with a broken leg as a result of getting hit by a car, but Dad always considered himself to be lucky because he considered other potential outcomes); historically, he was very adept at landing on his feet and at successfully dodging a bullet health-wise.

Another thing that made us think that Dad would defy the odds after the diagnosis was our experience with his mom, who had been very ill for over two years and who in fact had been receiving hospice care since the month before Dad was diagnosed. Just after Grandmom’s 90^th birthday, my parents met with her doctor and, due to severe swallowing problems and progressing weakness affecting her, they were told that she likely had only had a few weeks left to live. But her doctor and the hospice staff were wrong: she hung in there for almost exactly six months after she entered hospice care, and, in a story I will tell soon, I am certain that her death was directly linked to the timing of my dad’s. Before she’d had a stroke at the age of 87, Grandmom had lived a very active, independent life, and that’s the lifespan I had expected for Dad (or maybe even longer, given current and future medical advances). Grandmom was tough, but she was obviously a generation older than my dad and, unlike Dad, her health had been declining for several years. So when I heard the term “terminal” and learned about the expected prognosis for someone with Dad’s diagnosis, I used my family’s experience with Grandmom to our favor and decided to believe that the information didn’t apply to Dad, just like what we were told about Grandmom didn’t come true. Simply put, I figured that if she could defy the odds and live six months longer than had been predicted, surely Dad, who came in younger and healthier and stronger, could KICK CANCER’S ASS, probably even with one hand tied behind his back!

Although I do it myself sometimes for lack of more appropriate terminology, it really isn’t very accurate when what my dad and my family went through is referred to as “a battle,” because this is another thing I came to realize during Dad’s illness: A battle is something that can possibly be won, and really, against GBM (the type of brain cancer that Dad had), there is no winning. For many other types of cancer, fortunately, early detection and cure rates are increasing, but not for GBM. We’d heard so many inspiring stories, even some about people with other types of cancer who’d been given a not-so-great prognosis and had proven the doctors wrong, and we expected a story like that for Dad. Through networking on cancer support websites on the Internet, I made contact with a few people who had had brain cancer and survived long term, a few even who’d reportedly had GBM. If they’d survived, why couldn’t Dad? To me at the time, it almost seemed like a given that my strong, persistent father would pull through since a select few others had been able to do so. But, as we came to find out, in the vast majority of cases of GBM, it’s less of a battle and more of a siege:

Looking back, I think Dad’s inability to grasp his own diagnosis made it harder for us to do so as well (or possibly: it made it easier for us to stay in a state of denial). On the day before Dad’s surgery, which happened to be his 67^thbirthday, he wondered aloud about the upcoming surgery and about what was wrong, as he put it, and he said, “Well, I know it’s not cancer. I’m too lucky to get cancer!”

"Correction, Dad," I thought. You are “too” lots of things to get cancer: Too in-shape, too much of a positive thinker, too healthy, too in-the-middle-of-life, too much of a land-on-his-feet kind of guy, too much of a Good Guy, too NEEDED by so many people. Like Dad, I didn’t believe it could be cancer, and, even after we were told that it was, I still didn’t really believe it was or that what would end up happening could happen.

Another thing that contributed to my family’s disbelief in the diagnosis and the potential outcome - to our wearing of rose-colored glasses - was that, given his history and fantastic physical condition, even the medical people involved in the case couldn’t believe the diagnosis or later the decline. One of these people was his doctor, a general practitioner who had treated him for colds and the like for about a decade.

News travels fast in a small town, and we knew this would certainly be the case in the community in Missouri where my parents had lived prior to their move to Tennessee, the town where my dad’s company was based and where he still resided part-time so that he could work in that office. And so on the day after Dad’s surgery, my sister Jennifer and I decided to call Dad’s hometown doctor to get his “take” on the situation; I guess it was part of our “leave no stone unturned” plan. When we got Dr. Rod, as Dad called him, on the line, he said that he had heard the news about Dad. “I just can’t believe it! I saw him recently, and I thought he was the picture of good health!” he said. Me, too, Dr. Rod; me too. He wondered aloud if a course of steroid nasal spray that Dad had taken in the recent past might have caused a fungal growth in his brain: “Maybe that’s what some or all of the mass really is,” he said hopefully. [I later mentioned that idea to the neuro-oncologists at Duke, and they put Dad on an anti-fungal medication,just in case, or maybe just to placate me.] And that’s how we learned that denial and bargaining are dishes enjoyed not just by those who love a patient but also sometimes by medical staff members too, a fact that we would see yet again with Dad’s oncologist towards the end of Dad’s illness when I had to point out how weak Dad was so that the oncologist would realize that it was time to call in hospice. It's often said that there is strength in numbers, and what I came to see is that there is also great strength of denial in numbers as well. With Dad, in fact, it seemed that pretty much everyone involved – at least everyone who knew him as the Ironman athlete that he was – was wearing rose-colored glasses.

Dad, hammering in a stake to put up a tent in a field, not long before his diagnosis

Another factor related to our expectations about an exceptional outcome for Dad came from Dad’s oncologist and later, on an even greater scale, from the team of experts at the Brain Tumor Clinic at Duke University. Over and over, we were told that the treatment plan being used for Dad had great healing potential and specifically that the medicine he was getting, Avastin, was “a magic bullet.” Maybe I just didn’t hear and/or process it at the time, but I don’t recall a risk of a decline at the rapid rate at which it occurred for Dad ever even being mentioned during the pep-talkish treatment plan meeting at Duke or at any of the doctors’ appointments we had. As the oncologist said the day Dad was admitted to the hospital for the second time, the chemo Dad was on wasn’t supposed to suppress his immune system; an infection as severe as he had hadn’t been seen before in others on the same treatment protocol.

As I’ve mentioned in the telling of this story, I served as the Microscopic Improvement Recognition guard during Dad's illness; whenever I was around Dad while he was sick, I was always on the lookout for even the smallest sign that he was getting better: after the surgery, during rehab, after the Avastin protocol had been started, and even once the massive amounts of medications were administered when Dad was so sick during his second hospitalization, I was diligently watching for an indication of his getting better. On the day after Round 2 of the Avastin/chemo treatment, when I noticed that he was regaining some sensation in his left arm, I was convinced that was a sign that he was going to pull through. I even said something to him that night about maybe writing a book one day about his incredible recovery. “We’ll see,” Dad said, either not really interested in thinking about such a project or not fully believing that he would have such an impressive story to tell (Dad, the Ironman athlete, never thought of himself as that big of a deal; as dedicated, kind, and positive of a thinker that he was, he was also just that modest.) “We WILL see, Dad,” I told him, with total conviction that he was going to get well.

The last reason for the rose-colored glasses wearing during Dad’s illness was perhaps the most reasonable: we had to stir in some denial and some hope just to stay afloat in our massive state of shock, in the midst of the trauma.

Even when Dad was so weak and sick in the hospital right before he went home on hospice, I was convinced that he just needed nutrition and sleep to get better. I will never forget the words he said late at night a couple of nights before he got to go home: “I need to remember to tell Mom [he meant my mom – he often referred to her as ‘Mom’ when he was talking about her to my sisters and me]how much I love her and that I couldn’t make it without her. I am going to fight, as long as you all just help me remember to fight!”

I planned to help him remember and to help him fight, but, after we got him home, I realized it wasn’t really under my control or his.

While our bias was helpful in allowing us to hold onto hope while Dad was sick, it has served as a barrier in the processing and accepting of what ended up happening. It’s why I thought he would be with us for a long time still, so much so that I left to go home that first Sunday in January after he’d come home on hospice. It’s why I sometimes still talk about him in the present tense, and it’s why, even after everything, I still don’t fully believe that he is gone.

Chapter Ten, Part 4: Paving the Way

2016-05-17T09:51:00.001-05:00

Dad and his league of protectors, November 2010

There were lots of surprises during the time that Dad was fighting cancer, from the first announcement that he was sick to the rapid downward spiral that brought hospice into the picture much sooner than I had ever thought could be possible. But one thing that did not surprise me was the way those of us in the inner circle handled things. Time and time again during the hardest ordeal any of us had ever gone through, we pulled together in support of not just Dad but of each other. To be clear, though, we didn’t need a terminal illness, a phone call with terrible news, or a surgeon in the Room of Doom to remind us of how much we meant to each other; we were already very well aware of the preciousness of love and of life.

But when I think back about the collection of things, both little and big, that my mom, my siblings, their spouses, and our children did to care for Dad during that time, it warms my heart; it reminds me of the bond that we share and the fierce love that we have for my dad and for one another.

It stands to reason that a person’s spouse and adult children would make every effort and go to extremes in a life-threatening situation; one of the things that stands out in my mind as being exceptional though was the devotion of and the way that my husband and my brothers-in-law cared for my dad, which is something that I think exemplifies my dad’s relationship with the three of them, each of whom played a very important role in caring for my dad during the course of his ten-week long illness.

I suppose having a good relationship with the spouse of your adult child can be tricky, maybe especially between a father and his daughter’s husband. A father is always supposed to look out for his “little girl,” and certainly Dad always did that for my sisters and me, but maybe in a less traditional way than some other fathers. Dad wasn’t a hold-your-hand kind of guy in his parenting style; he always expected us to do the right thing, and he didn’t flatter us unless the praise was earned and well deserved. Looking back, I see his method of “fathering” us as adults as one in which he trusted us to be able to take care of ourselves based on what we had learned while we were growing up, and that included his having confidence that all three of his daughters chose to marry good men, men with whom Dad could be friends and with whom he could share a mutual respect.

Another thing that held true for my dad was that he could always take a joke. He wasn’t one of those people who could dish it out but couldn’t take it; in fact, he seemed to enjoy being the target of a prank or having people poke fun at him. There are many examples in my memory bank of this, and some of these involve Kevin, David, and Peter. One of their ongoing pranks on Dad over the years was dumping cold water on him when he was least expecting it on family vacations; there was great strategizing and even greater laughter each time they pulled this off.

Photo 1 of 2 from Water Dump #1 (notice Peter being sneaky in the background)

Photo 2 of 2 from Water Dump #1 - Dad's response: "Man! That's cold!"

Result of Water Dump #2 (off the top of a houseboat)

Sometimes the laughter came from conversations between Dad and his sons-in-law, talks during which Dad always played the role of the dizzy-blonde. During a family vacation about six years ago, our husbands were discussing computer programs they used in their jobs and the subject of needing support from their companies’ “I.T. guys” came up. Dad thought they were spelling the word “it” and asked what the job description was for an “it guy.” When they told him what “I.T.” stood for, Dad got really excited and proudly announced, “My company has an I.T. guy too! We’ve all got ‘it’ guys!” And of course that became one of the frequently repeated phrases during that trip and from that point forward.

Other times Dad’s own actions resulted in some friendly ridicule, and sometimes these incidents involved Dad’s fashion choices. On at least one occasion, when Dad got ready for the day, one of us recognized that the jeans he was wearing weren’t actually his – they were my mom’s! (We could tell because of the tapered legs of the jeans, which apparently escaped Dad’s notice when he put them on.) When this was pointed out to Dad, he laughed at himself and said in a mock-confused sounding voice, “Huh? Are these my pants?” This became the standard statement in my family when someone was caught doing something scatterbrained, an expression that we use in my house to this day. Another humorous exchange occurred at my house when Dad pointed out his new shoes to my husband; my husband took one look at Dad’s footwear and then asked,“Do they sell men’s shoes where you got those?” It took Dad several seconds to process the fact that Kevin was implying that his new shoes looked like women’s, but once he did he couldn’t quit laughing about it; in fact, for years afterwards, Dad often asked Kevin, “What did you say about those new shoes I got that time?” and the two of them would crack up as they relived the conversation.

Sometimes Dad intended for what he did to be funny; he loved to get a laugh from others and obviously didn't mind it being at his own expense. A few years ago during the SuperBowl, Dad evidently got bored and told Mom that he was going to take his Diet Coke and take a bubble bath. (I'm guessing that she thought he was kidding, but he wasn't.) When he got situated in the tub, he shouted for her to come in and take his picture so she could email to his sons-in-law, all for the sake of getting a laugh. Here's the result:

On some occasions, Dad tried to reciprocate the pranks that were played on him, although it was a challenge because, like me, he typically had a hard time telling a joke, scheming without being detected, and executing his plan while keeping a straight face. On one Christmas about seven years or eight years ago, Dad gave each of his three sons-in-law The Perfect Push-up (“As seen on TV!” he exclaimed when they opened their gifts.) and then sportingly challenged them to a push-up contest with the new gadget. (I must report, to the chagrin of the three men who were roughly half Dad’s age at the time, that Dad was the champ of the Perfect Push-up Challenge that day!)

But for all the pranks and fun-poking that went on during the course of their relationships with my dad, Dad’s sons-in-law were as fiercely protective of him as we were while he was sick. The respect and the love that they had for him were so evident and so touching, and it’s something I will never forget. During the first few days after Dad got sick, as we waited for the green light for the surgery that would give us the diagnosis, it was mainly just my mom, my sisters, and me there in the hospital room with Dad. On the day of the surgery, Kevin drove from out-of-town to be with us as we waited while Dad was in surgery, and then he helped to hold me together when the neurosurgeon handed down the diagnosis and the prognosis. From that point forward, my husband and my brothers-in-law became part of Dad’s league of protectors, a role in which they excelled because of their strong relationship with him from over the years.

On the night after Dad’s surgery, my mom, my sisters, and I were completely exhausted. Kevin volunteered to take the late-night shift with Dad in the ICU. As was par for the course, Dad slept “zero” that night. Whether it was a tough-guy act or a state-of-mind from after the surgery that he had been dreading, Dad seemed less anxious with Kevin around that night; in fact, when Jennifer and Nancy got to the hospital in the early morning hours to relieve Kevin, Dad and Kevin had all the lights on in the room and were laughing, watching football, and discussing politics. Not the sleepy-time setting the females in the family would have thought to provide, but just the right thing for Dad at the time, an oddly-placed sense of normalcy and some great male “binding time” (as Dad called any bonding experience while I was growing up.)

Later that day, David arrived on the scene; like my husband and my other brother-in-law, David is one of the most compassionate people I know, and, also like Dad’s other two sons-in-law, he was perfect for the role that he played during Dad’s illness. On the day after the surgery, Dad was still consumed with worry about time and somewhat disoriented about what time of day it was. Over and over, Dad looked at the clock on the wall of his ICU room and incredulously asked if the clock was right; he just couldn’t believe how slowly time seemed to be passing. David came up with a strategy that helped Dad right away: he covered the wall clock with a shirt to cut down on Dad’s anxiety about what time it was.

From the moment on the day after surgery that Dad was given the go-ahead to eat whatever foods he wanted, through Dad’s struggle to take in more calories despite his lack of appetite, to the last foods that Dad ever ate, his three sons-in-law were at-the-ready to get whatever Dad wanted to eat for him, at any time of the day or night. They made countless trips around the clock to get foods Dad was specifically requesting from restaurants and the grocery store and served as short-order cooks when Dad was able to eat food at home. They didn’t guilt or pressure Dad into eating, but the second he mentioned that he might like to have a certain food, they found a way to provide it for him, just in case.

When Peter took a red-eye flight to join my sister Jennifer, my parents, and me in Durham on our second day of appointments at Duke, he served as the logistics guy, helping to get Dad ready and out the door on time so we could make it to our early-morning appointment at the clinic, figuring out that Dad was safer and more efficient using the wheelchair instead of the walker during the trip, driving all over town to find a hotel that wasn’t already booked for the night before Thanksgiving, finding a set of safety bars and borrowing tools from the hotel to install the bars on the toilet in the bathroom for Dad since the hotel was not handicap accessible, and then driving the whole way home with Dad riding “co-pilot” that hectic Thanksgiving Day (with the two of them eating all of the gummy candy they could for entertainment along the way). His presence was definitely calming for Dad and for us, and having him there for that part of our stressful trip was so helpful.

One of the things that Dad worried a lot about during his illness was having his face shaved. (He wanted to have his head shaved like he usually did too, but, due to the staples and then the scar from the surgery, that wasn’t an option, and so Dad just focused on having a clean-shaven face.) While something like that would not be of any concern at all to some men who were so sick, Dad was impeccable in his grooming; all my life, I can remember him shaving at least once per day, even on weekends. Without a doubt, he was precise and proud – but not at all vain – about his appearance, a fact that did not change during his illness. Many times both in the hospital and after he went home in between hospitalizations, Dad got help with his shaving routine from one of his sons-in-law because his dominant left hand still wasn’t up to par. At first, it seemed like having them help him might take away some of his dignity, but right away we could tell that, with the way they handled it, their support actually gave some dignity and a sense of independence and routine back to Dad. The day before we left to go to Duke, we were all running around getting things ready for the trip. Dad kept saying he needed to shave, and finally I asked him if it couldn’t just wait. “I just need to shave,” he said insistently. “It just makes me feel better. Hell, I even shave on vacation, and this certainly isn’t a vacation.” Point taken. I didn’t trust myself with shaving him, and so Dad was so glad when David took care of it before we left on our trip, as he was when David helped him with it again in the hospital on the night before Dad came home on hospice.

Peter, shaving Dad

My husband and my brothers-in-law were the muscle and the strategists behind the equipment and the furniture that needed to be set up or rearranged at my parents’ house during Dad’s illness. They installed grab bars by the toilets and in the shower, moved couches and tables, and rolled up area rugs to make the environment as safe and as convenient as possible for Dad. I will never forget the way they moved the hospital bed from the den to my parents’ bedroom and then so carefully and tenderly moved Dad so that he wouldn’t be scared or hurt. Part of the peace and the comfort that we were able to provide for Dad once he came home was due to their presence, and, knowing the three of them so well and seeing how much they too loved Dad, none of that was a surprise. Like my mom, my sisters, and me, they were paving the way, doing whatever it took to care for Dad, and that is something I will always treasure and value more than I can adequately express.

Chapter Ten, Part 3: Spending Time

2016-05-17T09:45:00.002-05:00

As the sun came up on the first day of the year in 2011, family members filtered in to Dad’s bedside in the den of my parents’ house. Dad alternated between dozing for short periods of time and talking to those around him in a raspy voice. As we watched him dutifully try to swallow the pills that we gave him, we decided to start splitting them in half and then, if (when) even that became problematic for him, our back-up plan, which we ended up needing to employ only the next day, was to crush them or to ask the Hospice nurse for a liquid form of the same medicines. Like the Hope to which we were all still so desperately clinging, we would adjust the medicines as needed as part of the Bargain, while never losing sight of our overall goal of keeping Dad as comfortable as possible.

When I think back to the scene at my parents’ house that morning, I see it in my memory like footage on a time-lapsed video: a flurry of activity, with different family members and later the hospice nurse coming in and out of the picture and with Dad there in the center. After a brief and probably unnecessary discussion with my mom and my sisters, I cancelled the arrangements for the trip that Mom and I had planned to take with Dad to the Brain Tumor Clinic at Duke for a follow-up visit on January 17. I emailed back and forth with Dad’s swim team coach and friend Ashley as she worked to put together a schedule of meals to be provided to my parents’ house several times a week by Dad’s teammates on the swim team and other friends through the first week in March. My sisters and I wrote out a calendar showing when each of us would be there with Mom and Dad through the end of February. We were all struggling more than I can adequately describe to process what was happening and to think about what the future would hold; the amount of time we would have together was still very much unknown, and I guess it helped us in some way to feel a tiny bit of control by having a plan of sorts, “just in case,” a phrase that we seemed to be using a lot during that time. It was so hard to try to find the right balance of what should be done right that second and what reserves we would need at different points in the future. As my brother Lee said in an email, “Ideally we would all take leave at our jobs and just be there [with Dad] 100 percent over the next few weeks and months.” Even though none of what was going on was ideal, I suppose we were all still hopeful on some level that Dad would rally enough to have some quality time left, and of course we wanted to do what we could to be prepared and to be present for that, if our hopes came to fruition.

After Dad had gotten home the day before, I had updated the Care Page to let people know that he was home, and, in the morning on New Year’s Day, I updated it again. We knew that a lot of people were wondering and worrying about Dad and about us, and we hoped that through these updates, we could inform others about the fact that we had chosen to bring him home with hospice support while making it clear that we did not want to garner sympathy. I, in particular, didn’t think I could bear anyone else’s shock, sadness, grief, disbelief, anguish, or – what I thought would be the hardest to hear as I looked at Dad lying there in the bed – denial. I had more than enough of those things on my own. I felt like I was so fragile that I would absolutely fall apart (or unleash) if anyone said that they were sorry or otherwise framed our decision and Dad’s presence at home with us as a loss, even though of course we all regretted that his body could no longer withstand the treatment we had so hoped would give us a miracle. We wanted (and needed) support and love, and thankfully that’s exactly what we got, through the many messages on the Care Page and via other sources from our extended family members, our friends, and even from people whom we didn’t know but who knew Dad.

We thought Home would be nourishing for Dad, enough at least for him to improve enough to be comfortable and settled. As fuzzy as some of my recollections of my thought processes are from during this time, I clearly remember that we were all expecting weeks and maybe even months still with Dad and that we were hopeful (personally, I was actually expectant) that he would feel ok during the majority of this time. Jennifer, who lived the furthest away, had reservations to fly home with her husband and children in the afternoon that day, and, like the rest of us, she was painfully torn about whether she should stay by Dad’s side – which actually seemed less hopeful – or go home as planned and come back again to see him soon. How we desperately wished that the Hospice nurse or someone else would (or could) tell us what the best thing to do was! Instead, though, as we had been doing during the entire ten weeks that Dad had been sick, we pulled together and did what we thought should be done, with Hope and a couple of back-up plans in our back pockets. Mainly, our Plan was to have a Plan, even though we knew revisions and adjustments would most certainly have to be made along the way.

Before she and her family left to fly home, Jennifer booked a flight to come back the following weekend. Lee, who also lives far away, booked a flight to come for the weekend after that, and Nancy, my husband and hers, and I filled in as many of the other spots on the calendar as we could. We made arrangements with a company that provided “sitter service” (How awful is that term?) to have a trained nursing assistant come during the other times so that there would always be a third person at the house to help Mom with Dad, plus the Hospice nurse, around the clock. None of it was ideal, but it was the best way we could see to arrange for Dad to be at home, as he wanted and as we did too.

Around the middle of the morning that day, I went upstairs to take a shower. As I was getting dressed, Jennifer knocked on the bathroom door. “Dad is eating bacon and drinking beer!” she said excitedly through the door. With my hair still dripping wet, I hurried downstairs to see for myself, and there he was, in the den, with the head of the hospital bed cranked up, eating bacon and some of what he referred to as “fruity dessert,” which was fresh fruit that had been purchased already cut-up at the grocery store, a long-time favorite snack of his. Evidently, Dad had smelled the bacon that David had been cooking in the kitchen and had requested some along with the “fruity dessert” and a Foster’s, and, of course, he had been served all three right away. The TV was being changed back and forth between two of Dad’s standard New Year’s Day favorites, football and the parades. I remember sitting in a chair beside his bed and consciously soaking in what was going on in the room, so happy that we had been able to bring Dad home and that we were all there together in that moment, but so sad because I couldn’t help myself from realizing the necessity of hoarding that memory in my mind for when we couldn’t be.

In the many pep-talks I had gotten from Dad before races I had run when I was growing up, he had always advised me to run an evenly paced race while still saving enough energy to “surge” before the finish. “The race can be lost anywhere along the way,” he said every time, “but it can only be won on the last part of the course.” I guess that morning was Dad’s surge, his way of “kicking it in” on the last part of the course for us, even though he had already put in such an outstanding, impressive effort along the way.

“I need to close my eyes for a little rest,” he said after he ate. Not long after that, though, he opened his eyes and motioned for me to come closer to him. As I leaned in, with fear and confusion in his voice he asked hoarsely, “How will you know what I want to tell you when I can’t tell you anymore?”

Looking back from my vantage point now, I wonder if he meant what I thought he meant at the time when he said these words. I thought he was seeking reassurance that we would be able to meet his needs if he lost his voice, and, as such, that is what I focused on when I responded to his question.

“We’ll know because we’ve been able to spend so much time with you, and we know you,” I told him.

Not completely convinced, he said, “Are you sure?”

“Yes, Dad,” I told him, with as much confidence in my voice as I could manage. He made a motion with his fingers by his shoulder at the edge of the sheet on the bed, and then an idea came to me about how I could prove to him that we would know what he was trying to tell us, even if he could only gesture. “You want your covers to be pulled up, right?” I asked him.

“Yes,” he said, and then my sisters and I demonstrated the other hand signals that we had all come to associate with what he wanted or needed over the past weeks, from touching his forehead to mean “I want a cold cloth on my head,” to tapping his mouth to mean “I want something to drink,” to making a slight “come here” gesture with his index finger to mean “I want a little piece of chocolate.” I could see acceptance coming into his eyes, and, although I’m left to wonder if it was in regards to something much larger, at the time I took it to mean that hebelieved and trusted that we would continue to be able to meet his needs, and I was so grateful for that.

Over the course of the previous afternoon and during the night, we had decided to rethink our plan of having Dad’s bed in the den. Instead of enjoying being in the center of the activities going on in the house, he seemed confused and overwhelmed, and we hoped the solution was relocating the hospital bed to my parents’ bedroom.

Because we knew the move could potentially be stressful and could contribute even more to his level of anxiety and confusion, we asked Mom to take the four kids to run an errand to cut down on the number of people in the house so that we could keep things as quiet and serene as possible. And then, while Dad closed his eyes again for a little while, we huddled to come up with a plan of how we could safely move Dad and the hospital bed from one room to the next. Fortunately, the bedroom was on the same floor of the house, just around the corner from the den, but there was a short, narrow hallway that included two ninety-degree turns to navigate in between, and there was no way the hospital bed was going to fit through that opening without being disassembled. Dad had suffered so much from being moved while he was in the hospital, and we knew that the transfer could be scary and even painful for him, and so we turned over several possible strategies before settling on what we thought was the best idea for the move.

The Hoyer lift was out; having to turn Dad back and forth in the bed to stuff the harness underneath him and well as having him dangle in the air as we cranked the lift so the apparatus’s arm would swing him outward was just too risky. And so, we improvised: my sisters and I pulled the sides of the sheets underneath Dad up and wrapped them around him in a swaddling fashion. We lowered the bedrail and the adjusted the height of the hospital bed as low as possible, and then our three husbands swiftly and surely yet very gently slid/lifted Dad straight across from the bed to the couch. My sisters and I sat on the floor next to the couch to act as “human bedrails” and to distract and comfort Dad as needed. In a span of less than five minutes, our husbands, working in tandem while throwing out periodic reassurances like “Hang in there, Bill! We’re almost done!”, deflated the air mattress, disassembled the bed frame, moved all of the equipment from the den into the bedroom, and put everything back together, including putting on a fresh set of sheets on the newly-relocated bed.

I left my sisters to sit with Dad and stepped into my parents’ bedroom to check things out, and I was happy to see the hospital bed all set up, right next to my parents’ king-sized bed. With the rail lowered on one side of the hospital bed, the two beds were almost conjoined to make one giant bed. Given the circumstances and what we thought Dad needed, I thought it looked perfect. But next came the really tricky part: moving Dad from one room to the other. Again, we decided to forego the equipment (the wheelchair and the lift) and to use strategy and muscle: with Dad still cocooned in the sheets and blankets and with my brother-in-laws clearing the way and providing back-up support “just in case,” my husband carefully lifted Dad from the couch, swiftly carried him down the hallway to the bedroom, and tenderly placed him on the bed so that my sisters and I could quickly cover him up to keep him from being cold. Dad so obviously trusted his three son-in-laws so completely; he asked them once during the move, “Y’all have me, right?” but other than that he didn’t seem nervous or scared at all during the transfer, and he definitely seemed relieved to be in his own bedroom once the process was over.

Mom and the kids came back and were glad to see that the undertaking had been a success. We set up a baby monitor in the bedroom with the receiver in the kitchen and, when Dad announced that he needed a little quiet time to rest, we left the room for a while, although I will admit that my sisters and I took turns standing right outside the bedroom so that we could listen and peek around the corner to check on him every couple of minutes. It felt odd to leave him alone even for a minute, something that we hadn’t done since he’d gotten sick 70 days before. The whole situation felt surreal and very dichotomous; it was so good to have him home but so overwhelming and shocking that we were where we were. Watching him over the next couple of hours as he slept, I think part of me had already accepted that our time with him was very limited, but another part wanted (and needed) to believe that he could turn things around and hang on for much longer, although of course I didn't want him to have to if that meant more suffering for him. When I pressed for information during her visit that afternoon, the hospice nurse said that she couldn't predict how long but that she would guess it would be “in terms of weeks rather than months.” As my mom, my sisters, and I listened to her words, our hearts were breaking. We wanted to do whatever he needed, and yet what was so obviously happening was something none of us wanted to accept.

Nancy was sitting in the room with Dad when he woke up, and he told her to tell me to come into the room so he could ask me something. She did (she thought he was going to ask for medicine), and I did, and Dad asked, “Can I have a beer?” I told him yes and that I would check the schedule to see what medicines he needed and then after that I would bring him a beer. He seemed a little perturbed by my answer, and then he suggested not so subtly, “How about if you get the beer first and then do whatever else after that?”

I guess I hesitated for a second, and so he added for emphasis, “Don’t worry; just hurry!”

“OK, Dad,” I said, and as I left the room to get the beer, he called after me: “Tell everybody: don’t worry, just hurry!”

I returned as quickly as possible with the beer, and then I held the straw while he sipped it. After a couple of minutes, he seemed to tire, and he told me to put an extra Foster’s under his bed “just in case” he needed it for later. He said he didn’t want to have to bother anybody or to wait if he wanted it. I told him that I liked getting things for him, and, with a half-smile on his face, he responded,“Well, then, I guess I just don’t want to have to wait.”

Jennifer, her daughters, and her husband each spent time with Dad before they had to leave for the airport that afternoon. Each of them had to lean in close to him so they could hear him talking with his scruffy voice. When my nieces told him they loved him and then got up to leave the room, he put forth a visible effort to push his voice into an audible whisper as he called out that he loved them, too. As my husband, my daughters, and I did when we had to leave the next day, they all thought they still had time to come back and spend more time with him; none of us foresaw the speed at which things would happen over the next few days.

We continued to take turns sitting with or lying in the bed beside Dad for the rest of the day, through the night, and into the next day. He was still having intermittent pain, mostly in his head and his throat, and he was still having some anxiety, but all in all his discomfort seemed to be much better controlled than it had been in the hospital. Dad didn’t seem distressed about his own plight; his anguish came from worrying about his family and our future. He so obviously trusted that we would take care of him, but he also seemed to want to still be able to take care of us, too. It was like that was the last thing on his Revised Bucket List or on his “to do” list.

Although we gave Dad some small sips and then later squirts from syringes of water to drink, he was no longer requesting anything to eat or to drink. Little by little, we realized the truth about Nourishment, the substances necessary for growth, health, and good condition. What he needed wasn’t food or calories – it was re-assurance, comfort, and love.

By Sunday morning, we noticed that Dad’s level of anxiety and even confusion seemed to escalate if there were more than a couple of people in the room with him at once or if he could hear any type of background noise like that from the TV or any music. He seemed to like having someone there with him and several times patted the space in the bed beside him to indicate that he wanted one of us to lie down beside him in the bed, which we were happy to do. The pain medicine that we had been instructed by the Hospice nurse to give him on a strict schedule “to stay ahead of the pain” allowed him to rest intermittently, but at times we could see that he was distressed, even in his sleep. Several times while he was asleep, he called out things like, “I have to check on Mom!”and “Stanley [his younger brother] and I have to finish our homework!” By the time I had to leave to go home with my husband and my daughters, the worrying was blurring over into his awake-time too. It seemed like Dad was pulling out all the stops just to hang on.

Before I left, I went over the medication instructions again with my mom and Nancy, who, along David, were staying there. My daughters and my husband hugged and kissed him goodbye, and he in turn told them he loved them. As they packed the car, I went into the bedroom, climbed into the hospital bed, and put my head on Dad’s chest. He was quiet and still. I told myself that he seemed to be resting peacefully and that that was a good thing, but I couldn’t stop the tears from coming so fast and furiously that after a couple of minutes I had move my head from his shoulder so I wouldn’t get his entire shirt wet. I told him that I loved him, that I was so proud of him, and that I would always feel so lucky to have him for my dad, and then I kissed him and got up to walk out of the room. Although I did not realize the quickness of the events soon to unfold, as I looked back at him, so small and so quiet in the bed, I knew in my heart that, despite his struggle to stay with us and ours to keep him with us, Dad was fading away.

Chapter Ten, Part 2: Making it Through the Night

2016-05-17T09:41:00.000-05:00

I recently came across an article in the New York Times stating that Hospice services may be being misused in some cases (http://www.nytimes.com/2011/06/28/health/28hospice.html?_r=3).

Of course, no one goes around saying they are fine with money or resources being wasted or a system being abused. From my perspective, though, this article is an example of a very one-sided view, most likely one by someone who has never personally had to care for a critically ill loved one or to have support from Hospice.

What this article seems to be saying is that when a person who is on Hospice survives past the six-month point, he or she was not really a good candidate for the services received under Hospice care, and that they, their family, and/or the medical workers on their case either made a mistake or committed fraud.

According to this article, 19% of people on Hospice end up receiving those services for longer than the 6-month deadline (pun intended). As if that is a crime or something for those people to be ashamed of!

Anyone who ends up having to make the very difficult decision to bring in Hospice gets my sympathy; it’s a path down which none of us ever wants to go. But I will also offer an empathetic sigh of relief and a sideline cheer on their behalf, too, because I have been there – and because I know that Hospice is exactly what the health-care system in our country should be like. I know that Hospice can make a difference when nothing else can, not necessarily in the amount of time a person has left but in the QUALITY – and that’s what counts!! In fact, not just in the quality for the patient but for the entire family. And that will make a difference not just for those involved during the time the patient has left but for them for the rest of their lives.

There are a lot of things that are sad about the dying process, but what’s scary it is that we don’t know what to expect and we cannot control what’s going on. We are running out of time to be able to interact with our loved one who is so sick, and we have no idea what to say or do. We need advice, guidance, help, and support from someone who does know, and that’s what Hospice is for.

In my opinion, Hospice is the very best of health care; it means caring for one’s whole health, physical, emotional, and spiritual. And in some cases, I can see where having those needs met - and getting out of a germy, stressful hospital and doctor’s offices and sometimes even getting away from medicines and treatments that can cause more problems than they are fixing – can make a person BETTER, at least for a little while longer, maybe even longer than six months.

From my perspective, it makes no sense to then to punish or to invoke guilt on the person who is fortunate enough to eek out some extra time, or their families, or anyone involved in their care. Rather, we should give them a big shout-out, throw them a party, or hold a parade in their honor, because obviously they made the right choice in choosing Hospice.

And here is one thing to which I can attest without a sliver of a doubt: Others of us, whose loved one followed a more typical pattern of Hospice which, according to this article, is surviving only 17 days after beginning in a Hospice program, made the right choice, too.

Like many families in our situation probably do, though, we started out thinking that signing him up for Hospice was the same as giving up. So we did what we had to do: We took baby steps, cried a lot, took turns being strong and decisive, and forged ahead, as always, with a Back-Up Plan: We told ourselves that we were just going to “use” Hospice to get him home so that he could get stronger. We said to ourselves and to each other repeatedly that Hospice is revocable at any time, and we were on such good terms with Denial that we fully believed that we would probably revoke it once we got things under control.

I have never seen someone as relieved as Dad looked when we told him that he was going home the next day. He said “the best” would be if he could leave right that second, but “almost the best” would be when he got home the next morning. He tried to negotiate just how early he could leave the next day, but, for logistical reasons, the time had to be 11 a.m.

He, of course, slept “zero,” as he liked to quantify things, the night before, par for the course for him because of the massive amount of steroids he was on, and he must have asked at least 50 times what time it was and if it was time to go home yet. He was so wound up and anxious by mid-morning that the nurse at the hospital gave him a sedative, which knocked him out for the ambulance ride and for pretty much the rest of the day. I was grateful for his sake for the former but disappointed by the latter; I had envisioned him coming into his house with the biggest smile on his face, finally looking happy and feeling like he was where he wanted to be.

Thinking he would want to be in the center of the activity going on in the house, we had opted to have the hospital bed set up in the den instead of the master bedroom. When he woke up, he was very disoriented. He said, “You promised I was going home!” because he knew he wasn’t in his bed or in his bedroom. He was trying so hard to get himself together, to rally, and to feel lucky or even just not to feel terrible and terrified.

The hospice nurse came soon after Dad got home, and my mom, my sisters, and I took turns sitting at the dining room table with her and sitting with Dad. We wanted him home, but we still weren’t sure the Hospice decision was the right one. More than anything, we wanted to protect Dad, and we thought that part of doing that was not letting him think we had called Hospice because we had given up Hope.

But as we exchanged information with the nurse, we realized that we weren’t giving up, we were gaining – gaining some control over an out-of-control situation, gaining knowledge, gaining allies in meeting our goal for Dad, which was keeping him from hurting or being afraid. We had found the Captain of the ship that our Plan had been lacking, and that made such a difference. We were still heartbroken and in shock, but we were in this together, finally with exactly the kind of support needed by Dad and us, and we were as armed as we could be to care for him. Instead of having to fight, beg, question, and monitor as we did in the hospital, we were able just to hold his hand and talk to him even when he couldn’t talk back anymore.


When all the world is a hopeless jumble And the raindrops tumble all around, Heaven opens a magic lane When all the clouds darken up the skyway, There's a rainbow highway to be found Leading from your window pane To a place behind the sun, Just a step beyond the rain.

Although there are obviously things we would change about what happened during Dad’s illness that might have contributed to his rapid decline as well as other things that didn't hurt him but didn't help him either, we were so very lucky to have had a fantastic Hospice service to help us at the end of Dad's life. Even though it didn't change the outcome of what happened, it did change the quality of how it happened for him and for us.

Dad was an outstanding mentor and had a great way of leading and teaching others with positive perspective and humility, and he died exactly that same way only five days after he came home on Hospice, selfless and courageous as always. I wish so much that we could have been among those whose loved one had to get an “extension” on Hospice services because they’ve outlived the six-month time allowance, but of course we didn’t want Dad to suffer any more than he already had, and, with the support of Hospice, we realized that it was his time to go on ahead. We are forever changed by being with him when he was sick and when he left this world, but not nearly as much as we are by having him to shape our lives over the years.There in the hospital bed in my parents’ den on New Year’s Eve, it was so apparent that Dad was so sick. Yet I was still desperately clinging to the Hope that just being at home would help him. I don’t think that I still thought that a cure - or even long-term survival - was a possibility. At some point in the days before, I had bargained those things away: Just let him feel better, just let him get home, just let him not be scared or in pain, I thought. He was home, and we were so, so glad and grateful for that, but we were still waiting on the other two parts of the Deal to come through.

There was a definite sense of protectiveness in the house at that point; we were all racking our brains for what else we could do to help Dad. My brother-in-law Peter brought him food and a Diet Coke from Sonic, but he slept so long that the food got cold and the drink got watery from the ice melting. My sister Nancy figured out how to empty the catheter bag, and we carefully administered the medications right on time. We cut one of Dad’s shirts up the back and gently put it on him, and we kept him covered with blankets so he wouldn’t be cold.

We kept telling ourselves that we weren’t painting ourselves into a corner by deciding to sign up for support from hospice; we said to ourselves and to each other that we could always revoke. I didn’t want anything to be for sure; looking back now, I think I had to keep the door open in my mind to keep from completely crumbling. At the time, I kept thinking about that picture of a bird that has been caged and is being let go and below the picture it says “If you love something, set it free.” Every time that picture popped into my head, I thought NO! Dad isn’t caged except by this monstrous cancer and the pain and anguish it’s causing him, and he doesn’t want to go! We didn’t want him to go either – and I wasn’t sure that I could stand it if he did – but we wanted the suffering, which was so undeniable at that point, to be over for him.

As the clock moved closer to midnight on New Year’s Eve, most of our group went to spend the night at my aunt’s house nearby. Mom went to lie down in my parents’ bed in the bedroom, and Jennifer and I planned to split the night taking care of Dad, with Peter providing back-up support when we needed help to reposition Dad in the bed or to get medicine or something to drink for him from the kitchen. Jennifer took the first half of the night; when I tagged in for the second half, she told me that Dad was uncomfortable and anxious and that he really seemed to want someone to stay right with him. She had pushed one of the couches over so that it was right up next to the hospital bed, but the bed was higher than the couch and so she had been lying wedged in between the couch and the bed so that she could hold Dad’s hand and be close enough to him to hear his gravelly voice without disturbing or hurting him. Just like the New Year had slipped in unnoticed in the house, I slipped into her place on the couch as she slipped out. Dad didn’t react at the time, but a little while later, when he opened his eyes and saw me there, he did a roll-call of sorts: he asked me where every person in the family was, as if he were just checking to be sure they were all ok.

We were quiet for a while, but I could tell he wasn’t asleep. Then, with great sadness in his voice, he threw out words that cut me to the core: “I wanted to go out like a man!” I wanted to tell him that he wasn’t going anywhere, but I knew in my heart that I couldn’t make that promise anymore. So I told him about something that I remembered from many years before: I reminded him of one time when he'd had to quit in the middle of a race he was running because his calf muscles had cramped up. He’d hobbled along the road until he couldn’t anymore. We pulled up beside him in the car, and he got in and propped his legs up on the dashboard. I could see that his calves were in knots, and I could see the pain in his eyes along with the shame and disappointment he'd felt as he’d told us that his body just couldn’t go any further. That night, I looked at him lying in that hospital bed, and I could tell he was listening intently. I wanted him to realize that he just needed to keep going for as long as he could but that, when he couldn’t do it anymore, we would understand, we would know without a doubt that he'd given it his all, we would still be fiercely proud of him, and he would not be any less of a man or worthy of anything less than complete respect.

He took all of that in, and then he said, “I guess I’m glad you remember that story.”

“Why?” I asked hopefully. “Because it was a good lesson in knowing that even the toughest of people have limits?”

“No,” he said, “Because it means that nothing is wrong with your memory, so that means you don’t have a brain tumor.”

I was trying hard to keep up with his thought process, but I was struggling. “Dad!"I said. "You remember it too! It’s just part of your story, and I know you remember it.”

He thought for a minute, and then he said very seriously, “Yes, but I don’t think I always will, or maybe I just won’t always be able to tell about it or other things that have happened.”

Maybe I wasn't sure of exactly what he was saying, or maybe I just didn't want to be sure. “Don’t worry, Dad,” I told him, grateful for the darkness of the room that I thought was hiding my tears from him, “I’ll remember all of the stories, and I’ll tell them all.”

He dozed for a short period of time after that, and I remember lying there thinking about how when I was growing up, my mom had always said that whatever you are doing on New Year’s Day would be indicative of what you would spend a lot of time doing the rest of the year. I closed my eyes, but even that didn’t keep the tears from falling furiously as I wished with all of my might that that would be true, that I would get to spend more time with my dad in the New Year.

Chapter Ten, Part 1: At Last

2016-05-17T09:33:00.002-05:00

I wish I could draw, because if I could, I would draw two pictures side-by-side, one that shows how I pictured things going as we prepared and then got to bring Dad home from the hospital, and the other that shows how things actually went.

On Dad’s last night in the hospital, his mood fluctuated between excitement about getting to go home the next morning and distress that he couldn’t leave even sooner. “My ride [the ambulance] cannot get here soon enough!” he said impatiently several times. Nancy and her husband David stayed with him during the first half of the night; per Dad’s request, David shaved Dad’s face, and Dad and Nancy talked about what Dad was going to wear home the next morning. “I guess I’ll wear flannel pj’s and running shoes for the ride home,” Dad announced.

Dad put in a special “last dinner in the hospital” request with David, who kindly went and picked up a to-go order from Steak ‘n Shake. Dad ate half of his order of Three-way Chili, took a break, and then proceeded to gobble down some pretzels, half of a Snickers bar, and an entire Cliff bar, and, of course, washed it all down with Diet Coke.

By midnight, Jennifer and I had tagged-in for the late-night shift with Dad. He was getting super-antsy; he requested and was given a sleeping pill and later another pill for anxiety, but nothing seemed to calm him. He directed Jennifer and me to “get real close,” and so we each pulled a hospital-grade recliner up next to one side of his bed and put the bed rails down so we could hold his hands and talk to him while he tried to go to sleep. After an hour of so of more fretting (“You PROMISE I’m going home FOR SURE tomorrow, right?” he asked us repeatedly), he dozed for about an hour but woke up again around 3 a.m. saying, “It’s just too much! I hurt all over!” After watching us try for quite some time to get him settled again, Nurse Jim gave Dad a pain shot, which knocked him out for a few hours.

While Dad slept, Jennifer and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home. Jim was very reassuring and, as an added bonus, packed some “to go” supplies for us to take home. He sang the praises of hospice care and of the support they had to offer. Finally, we looked through the window of the hospital room and saw the sun coming up over the horizon; at last, it was Going Home Day!

About 8:00 that morning, Mom and Nancy took over at the hospital, and Jennifer and I drove to Mom and Dad's house to coordinate the preparations there. Dad continued sleeping for about another hour; when he woke up, he remembered right away what was planned for the day. He was still very anxious, though, and still in pain. By 10:00, he started experiencing some shortness of breath. “When is that ambulance going to get here? Why can't they hurry up?” he asked over and over, first eagerly, then angrily, and then desperately and in a panic. When Nurse Dave noticed Dad’s heart rate climbing and saw the anguished look in his eyes, he gave Dad a pill for anxiety and a shot for pain. At last, Dad relaxed, and then he fell into such a tranquilized sleep that he did not wake up even as the paramedics transferred him from the hospital bed onto the gurney and then into the ambulance, as they sped down the highway, or as they wheeled the gurney into the house.

Meanwhile, at my parents’ house, my husband Kevin and David were hastily rearranging furniture while Jennifer and I directed the set up of the newly delivered hospital bed. Kevin and my daughters went on a mad dash to the store to buy extra sheets and pillows which we quickly threw into the laundry; we wanted to be prepared for bed-linen changes, and we knew the pillows would be needed for positioning Dad in the bed.

We had decided the day before that the hospital bed would be set up in the den; we thought Dad would enjoy being “in the mix” and that he would really like watching his flat-screen TV right by the fireplace and the space heater that was set up in that room. Our husbands switched out the curtains so that heavier ones were hung in the den to block out early-morning sunlight (ambitiously – or maybe crazily – we still held out hope that Dad would be able to sleep despite the track record since he'd gotten sick). The guys brought a couch from upstairs to add to the couch in the den so that two people could easily sleep in the room with Dad at night. It was a mishmash of furniture and equipment, but it was as we felt it needed to be so that we could accommodate Dad’s needs at home.

A Hoyer lift

The medical equipment guy also brought a pressure-relief mattress and a Hoyer lift, which is a specialized device that uses a sling and hydraulic power to gently and safely transfer a person whose mobility and strength are compromised from one place to another. I was familiar with patient lifts from my hospital/nursing home days of employment in the past, but it had been years since I’d operated one and even then it had been more of an industrial grade model. Jennifer asked the rep to instruct us and then to watch us use the lift to be sure we wouldn’t risk injury to Dad when we used it to lift him. Jennifer played the role of the “patient,” and Kevin, David, and I practiced using the lift until we felt confident. We hurriedly put sheets and blankets on the bed, and then we waited. (We had his favorite Dodgers blanket and his Glee pillow all set to go!) Oddly, along with Jennifer, David, my husband, my daughters, and me, and alongside all of that medical equipment and awkwardly arranged furniture in the house, it felt like there was Hope, something positive in the room with us. And at last, I, who had had tears streaming pretty much non-stop for several days, was able to stop crying.

When Dad’s “ride” arrived at the hospital as scheduled about 11:00 that morning, he was still knocked out from the sedative. There were no big goodbyes with the staff, there was no cheering by Dad or by anyone else, there was no Going Home outfit of flannel pj’s and running shoes for Dad; everyone was all business and efficiency. Had he been awake, I’m not sure if Dad would have high-fived everyone at the nurses’ station and in the hallway on his way outside or cried tears of joy and relief – maybe both. Regardless, though, it was a smooth ride home, something that was well deserved and perhaps even long overdue.

When the ambulance quietly pulled up into my parents’ driveway around noon that day, we were as prepared as we could be inside the house. The fireplace was “on” (as Dad said about the gas logs), there was Diet Coke and Foster’s chilling in the fridge, and the pets were quarantined in a bedroom to keep them from being underfoot during the transfer process.

I had envisioned Dad, exuberantly smiling and laughing as he entered his house that day, but the scene unfolded much differently. Dad slept as the paramedics rolled him in on the gurney through the garage and into the den and as they smoothly shifted his sheet-covered body into the hospital bed. He slept as they simultaneously raised the rails on each side of the bed, checked his vital signs once more, and quietly exited out the back door. He slept while the dogs and his cat Foster came back into the room and took their places on the pet-beds by the fireplace. In fact, he continued to sleep for several more hours. Not quite the homecoming I had predicted, but at least it went smoothly and at least, at last, Dad was home.

While he slept, we unpacked, did more laundry, and watched over him. I got out my laptop and searched the Internet for modified clothing that I thought would make it easier for his clothes to be changed when needed. I kept picturing him sitting up in his recliner, wearing sweatpants and a running t-shirt, but I wasn’t sure how it would work for him to be dressed like that because of his catheter and the PICC-line in his arm. I bookmarked a website that sold what they referred to as “easy access clothing,” but the clothes they offered were not what I would call stylish – and for some reason (habit, denial, hope?), I still thought that mattered. Finally, I wrote “ask about clothes” on the To Ask Hospice Nurse List in the Notebook; We have to figure out something about what he will wear, I thought. He won't want to keep wearing a hospital gown, and surely the Hospice nurse will have a resource for what we are looking for apparel-wise.

Not long after that, the medications ordered through Hospice were delivered to our door – no having to get out in the cold again, no waiting in line in Walgreen’s,no insurance co-pays! My brother-in-law Peter inventoried and organized the pills and recorded the name and the dosage of each in the Notebook. A little while later, Linda, the intake nurse from the Hospice service, arrived. As our husbands and my daughters stood guard over the still-sleeping Dad in the den, my mom, my sisters, and I sat down with Linda at the dining room table for an exchange of information. She asked questions, she told us more about Hospice, and she assured us that we would have the support we needed to care for Dad. We asked questions (shocker, right?), we told her about Dad and our story, and we showed her the Notebook, including the chart we had been using to keep up with his medications before he had gone to the hospital. Linda looked at our lists and our charts, and with the utmost compassion in her eyes, she told us that we had done a good job keeping up with everything. “Hospice is here now to do most of the ‘figuring out’ for you, though,” she said tenderly.

“We’re just so worried, and we want to make sure we do everything right for him,” I told her. She told us that, above all, Hospice would focus on symptom-relief and comfort, and she pointed to a little box that had been included in the delivery from the pharmacy. “That’s the Crisis Kit,” she said. “It will be here just in case.”

“In case what?” my sister asked her.

“In case he gets into distress for any reason – if he has trouble swallowing or breathing or if we need extra help controlling his pain,” she said. She must have seen the panic start to creep onto our faces, because she quickly added, “If you have any concerns or notice any changes in him at any time during the day or night, you should just call the Hospice nurse on duty and she will come right over. She may even instruct you over the phone about giving him medicine in the Crisis Kit or in the prescription medications he has. Don’t worry, though, you won’t have to decide any of it on your own. We will take the reins, so to speak.”

We asked her about the two things on the medical care list that made us the most nervous: flushing the PICC-line (to keep it open in case it needed to be used for medication administration at a later time) and dealing with Dad’s blood sugar issues. To the first concern, she said that an RN from Hospice would come by at least once a day and could do the procedure, instead of by us. She opened the blood sugar testing kit and showed us the lancets and the glucose testing meter. She explained how we were to insert a lancet and a glucose test strip into the testing meter, push a button to release the lancet into his finger, and then wait until we saw the blood sugar reading appear on the digital screen. “Do you want to try it on him while I am here?” she asked. “It’s not time to do it yet but we can just do it for practice if it will make you feel better.”

“Just do it on me!” Jennifer volunteered.

“Seriously?” Linda said.

“I’d rather have it practiced on me than on Dad,” Jennifer responded, and so Nancy set up the meter and checked Jennifer’s blood sugar (a perfect 100!). We were good to go on that.

I told Linda about my quest for suitable clothing options for Dad, and she said that, while we were of course free to purchase custom-made clothing, many of her patients who didn't just wear hospital gowns wore "street clothes" or pajamas that had been cut down the sides or up the back to make it easier for those items to be put on and taken off. Easy enough, I thought.

Linda said that she needed to look in on Dad as part of her initial assessment. I told her that we did not want to tell him that we had called Hospice. She said that she had had that request before and that her “rule” was that she would take off her name tag which prominently identified her as being from a hospice service and that she wouldn’t bring up the subject with Dad but that if he asked her if she was from Hospice she wouldn’t lie to him. Fair enough, I thought, and we lead her into the den to see him. She gently and efficiently checked his vital signs and then went back into the dining room to record the information in her notes. She hugged my mom, my sisters, and me and told us that another RN would be coming in the morning and that she or the other nurse would be available by phone if we had any questions or concerns. We felt better; we felt like there was a plan and a back-up plan in place. We felt like we could handle things, at least until the next day, and, as it had been, our strategy was to take things one day at a time.

As the sun was setting and the room was starting to get dark enough for us to need to turn a couple of lamps on, Dad opened his eyes and looked around. “At last, he is awake!” I thought. I waited for him to break into a big smile and say that he was so happy to finally be back at home. Instead, though, he said in a desperate, gravely-sounding voice, “But you promised me I was going home!”

“You are home, Dad!” I told him. But he wasn’t convinced. We told him he was in his den and we pointed out the things around him. The more he looked around the room, though, the more disoriented and upset he became. Finally, Jennifer picked up Foster and put him in the bed with Dad. Foster curled up right next to Dad and purred loudly, as Dad petted him and dozed off again.

Chapter Nine, Part 4: Gearing Up

2016-05-17T09:29:00.003-05:00

When I think back to the last few days of Dad’s hospitalization, I remember so clearly some of what was going on, but other things are a blur or even a blank. I remember sitting by myself in the hospital cafeteria with a turkey sandwich in front of me, but I don’t remember how I got there or how the food got onto my tray. I remember the tears that I could not stop from falling in a steady stream and both wanting and not wanting to be comforted. I remember taking a bite of the sandwich and thinking that it tasted like cardboard but eating it anyway, because, like a lot of things going on during that time, it was something that I knew I had to do. I remember thinking to myself, “You have GOT to hold it together” but not being at all sure that I could. I remember feeling so desperate and so heavy with the weight of the decisions that my mom, my sisters, and I had to make. I knew there were things that had been done that couldn’t be undone, and I knew there were actions that had to be taken to make things right for Dad. I knew that I still wanted to choose Hope, but I realized that, from that time forward, Hope was going to be coming in a different form.

We had another couple of lucky draws from the Nursing Assignment Fairy. Dad’s tag-team nurses this time, Day Shift Dave and Night Shift Jim, were very patient in teaching us about Dad’s medical needs. Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway. They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding. Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.

Even with support from Nurses Jim and Dave, though, we continued to scramble to try to meet Dad’s needs, often apparently without success. "It's just too much!”Dad said numerous times, with despair in his voice and with pain in his eyes. “Please, can’t I just go home?" he pleaded again and again. It was, in a word, heartbreaking.

The doctors, especially Dad’s oncologist, still appeared to fluctuate betweenbeing baffled by the severity of Dad’s continuing medical problems and being blind to it. Among the team of physicians involved in Dad’s care, no one seemed to really understand his declining status -- they said the tumor was "holding steady" and that his blood counts were “back to normal.” For whatever reason, not a single one of them really saw Dad struggling to lift his head from the pillow or really heard him when he said, “I hurt so bad!” or “I just want to go home!”

There is such a dichotomy when someone you love is catastrophically ill; on one hand, you want the medical staff to realize how unique and special your loved one is, but, then again, you also want them to swoop in with the attitude of “This is no big deal - I see this stuff every day!” Either way, though, you expect them to accurately and efficiently assess what is going on and then to figure out what to do about it. This absolutely did not occur among the physicians on Dad’s case. Either they didn’t really see what was happening or they saw it but they didn’t know what to do about it. By the third day after Dad had been moved from the ICU onto a “regular” floor, we had begun to see that we were going to have to figure things out on our own, and that is a horrible feeling, entering unchartered territory, in a state of shock, without a guide.

Despite the lack of progress in Dad’s condition, the oncologist was gearing up to send us home before New Year’s Day rolled around. He was all set to take another three-day long weekend starting that Friday, and so on Wednesday he wrote orders for the nursing staff to show us how to check Dad’s blood sugar, how to administer the insulin, and how to flush the PICC-line so that it would remain open for use if needed. He told us that he had discussed Dad’s case with the neuro-oncologists at Duke and with the local radiation oncologist and that they felt the best plan was to have Dad start radiation and resume the chemo and Avastin one week after he had been discharged from the hospital. He suggested that we consider having Dad moved to an inpatient rehab facility “for building strength prior to the start of radiation.” He informed us that Dad would need “to be able to move himself onto the treatment table and to maintain a seated position for several minutes at a time in order to sit for the radiation treatments.” (That, to me, was like someone telling me to run a five-minute mile; of course I wished I could do it, but, even giving it my all, it just wasn’t going to happen.) When I expressed my concerns about Dad’s ability to withstand the radiation treatment, both in sitting for the treatment and in avoiding the possible side-effects such as a lowered immune system, the doctor’s response was, “Because he’s had a less than ideal response to the primary treatment, it’s a bit of a long shot that he will qualify for radiation and even more of one that the treatment will help, but I still don’t think it’s a crazy option.” I asked him if the radiation could result in a functional improvement for Dad, and he said, “We just don’t know. If the radiation is able to shrink the tumor, there is a small chance that things will improve for awhile.” None of this was sitting right with me; I felt like not only were we being offered less-than-desirable choices but we were also being told that the odds were slim that any of the things being discussed would help Dad much if at all, if he even qualified to get any of them.

When the oncologist left Dad’s room, I followed; I caught up with him at the nurses’ station and told him that we were worried about how we would care for Dad at home but that we wanted to take him home. “I just don’t see rehab as an option for him right now,” I said. And then I pushed even further. “I asked you when you first came on as Dad’s oncologist if you would let us know when the time came for us to call in Hospice. Do you think that time is now?”

He looked puzzled, but I kept at it: “Other than a slight decrease in pain and his fever going down, there really haven’t been any changes in him since we got here over a week ago. He’s completely dependent on us for everything, he’s miserable, and he wants to go home.”

“I’m not sure,” the oncologist said.

“What would you do if this were your dad?” I asked him.

“I know exactly what I would do,” he responded. “I have medical power of attorney for my dad [who is also an oncologist], and he has told me in no uncertain terms that if he is ever diagnosed with an aggressive cancer, he does not want treatment; he does not want measures to be taken that will prolong things.”

Wow, I thought. “And so, about hospice?” I persevered.

“I think maybe there may still be some options we should consider. He could stay in the hospital through the weekend if needed. Let’s talk again in the morning.”

I said ok, but it wasn’t. I didn’t understand how he didn’t understand what I was saying or how he didn’t see what seemed so evident. How could he think that staying in the hospital “through the weekend” would make a difference for Dad, except to depress and frustrate him more? And how could he have been so quick to give an answer as to what he would decide to do for his own father and not be of the same mind for my dad at this point? I was baffled and so, so sad; I just didn’t get why he didn’t get it.

After he left the unit, I stood in the hallway outside of Dad’s room crying, and Nurse Dave came over and put his hand on my shoulder. He said he had heard my conversation with the oncologist. “He doesn’t see what we see,” he said. “I know!” I wailed. “Sometimes that is the case with oncologists,” he said gently.“It’s like their only goal is a cure, and sometimes that just isn’t going to happen. Sometimes treatment doesn’t work. Sometimes treatment isn’t what a patient really needs or wants. Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on hospice without making any kind of commitment.” As my sobbing subsided, I considered his words carefully. I knew we needed help and more information before making any kind of decision. I knew we had to figure something out and that we needed to do it quickly.

That night, we made a list in the Notebook of possible options, including having him go to rehab again. (Based on my professional experience, I knew this was not really an option for a patient in such a severely depleted physical condition; based on my personal experience from when Dad was in rehab in November and made NO progress whatsoever, I knew it wasn’t an option we were even going to consider, but, because the doctors said they thought we should think about it, I put it on the list.) Checking him into an inpatient hospice facility went on the list, as did taking him home with home health or with support from hospice. Those were the options, as we saw them; none of them were good, and it was quite possible that none of them were even doable if the stars didn’t line up just right and if we didn’t get our ducks in a row first. For a split second, it seemed like there were gray areas in our what-to-do, some sorting through of the pros and cons that needed to be done for each of the considerations. But then again, looking at Dad, lying there in the bed, it quickly became abundantly clear: what we wanted for Dad – what he wanted – was right there in the forefront of our minds, and that was for him to get to go home.

We were very concerned about our ability to provide the quality of care that he would need in that setting, but we wanted to try to figure it out. As had been the case during Dad’s treatment, we planned to operate as a team, and, also as we had been doing, we would take each hurdle as it came. Our focus became finding out what we needed to know and getting set up to care for him at home; we were gearing up both physically and emotionally for what we couldn’t deny lied ahead.

And so the question became - How can we get him home and take care of him? Looking at our list in the Notebook, the only way we could see it happening was with ongoing support from an outside source, and the only form in which that seemed to be available to us was through hospice. At first, the decision to go with Hospice seemed like surrendering, but, as we met with representatives from different agencies and learned more about the process and the services, it started feeling more like taking control of the situation for the first time since Dad’s diagnosis. We told ourselves that we were just going to “use” hospice … and then we could revoke, if things improved as we hoped they would. The home environment will be therapeutic for Dad, I thought, and then he will start feeling better.

Early the next morning, Jennifer and I caught the oncologist in the hallway before he went into Dad’s room. Before we could even say anything to him, though, he said, “I thought about your dad all night last night, and I realized that what you said yesterday about calling hospice is the right decision. I want to talk to your mom and your other sister too, and then, if you all are ready to go ahead, I can write the order for a consultation from different hospice services, and then you can make a decision.” We stepped inside Dad’s hospital room and saw that, thanks to the pain shot he had gotten an hour before, he was medicated into a sound sleep. We all sat down around him, and, after further discussion, we said yes, we would like the orders to be written. The oncologist looked at Mom and said, “I just want to be clear on this: are you ready to sign a DNR [do not resuscitate] order? That will be required in order to get hospice services.” No, of course we weren’t “ready,” I thought, but it is what needs to be done. Mom took a deep breath and said she would sign the order. The way we saw it, Dad deserved to go home, he deserved to feel better, and he deserved a chance to enjoy his family, and if that meant using hospice, or signing a DNR order, or doing anything else, then that’s what we would do.

After the oncologist left, Jennifer, Nancy and I talked to Nurse Dave about hospice. We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before. Dave suggested that we make an appointment with a representative from all three agencies to learn about each one. “I think you should sit each of the reps down and ask them specifically,‘What makes your agency the best choice for us?’”

We took his advice to heart, and we did just what he had suggested. The intake nurse from the first company gave us lots of information and then, when we asked her the “Dave” question, she said, “We are the only hospice service that has 24-hour crisis care, which is in-home nursing support for critical cases.” After that, we interviewed the other two agencies, but we knew as soon as those words were spoken that the first company was the one we needed.

When the oncologist came by that afternoon for his evening rounds, we told him which hospice service we were planning to use. He said that he had heard excellent reviews about their services and that he would work with their physician to be sure we had whatever we needed to take care of Dad at home. “I am going off duty for the next three days for the holiday weekend,” he said, “but I will call you at home on Monday to check in.” He had tears in his eyes, and he seemed genuinely concerned as he turned to leave the room, but, as we came to find out,that would turn out to be the last time any of us saw or heard anything from him, ever.

And so we met again with the intake nurse from hospice and, with her help, hammered out the details of setting up a delivery to my parents’ house of equipment and supplies first thing in the morning, and then she made an appointment to have Dad transported home by ambulance. The next morning, Jennifer and I would be at the house to get things set up there, my mom would ride in the ambulance with Dad, and Nancy would drive Mom's car while following the ambulance. Along with all the necessary medications and medical supplies, we would be getting a hospital bed with a special pressure-relief mattress and a Hoyer lift which could be used to gently lift Dad to move him as needed. At last, we felt like we had the help that we needed, and the wheels were set in motion.

It felt buoyant to tell Dad that he was definitely going to get to go home. As soon as the words were out of my mouth, though, he started trying to sit up in his bed as if he thought he needed to get ready to go right that second.  “It will be tomorrow, Dad,” I told him.  “We have to get everything ready first.”

“What’s to get ready? I can just get in the car and go, and all of my stuff is already at home,” he responded hopefully. I told him we had to be sure we had the medicine that he needed and that the doctor had said he had to stay in the hospital until the next morning, and he finally accepted that in a deflated kind of way. He was ready to make big plans, though:  “As soon as I get home, I want to turn on the fire in the fireplace and the space heater so I can finally be warm. I need to stretch my legs and then I’m going to play with Foster and the dogs and drink a beer, okay?” he said.

With that, I smiled for the first time in a long time.  “Okay, Dad, that sounds like a great plan,” I told him.

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then. When I talked to Nurse Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.” We wrote in the Notebook the wording we thought was better for him to hear, if and when the topic of hospice came up: This allows us to care for you at home. We’re going to take care of you. You did a good job and now you get to go home. And the clencher – You don’t have to worry anymore; you are going home.

Chapter Nine, Part 3: The Turning Point

2016-05-17T09:25:00.002-05:00

I suppose there comes a time in the life of almost every person with a terminal illness when they and the people around them realize they have turned a corner that is not for the better as they had hoped. It’s that day, that hour, that moment when the stakes are changed and so is one’s perspective, when the focus of treatment becomes different from when it was a Cure.

I think that Turning Point in Dad’s illness was different for my mom, for each of my siblings, and for me. For Mom, I think it was on our trip to Duke, first when she realized that Dad’s concept of time, which had always been absolute in him, was totally gone, and then when we got to the Brain Tumor Clinic and she noticed that Dad was the only patient there with his level of impairment. As we rolled down the interstate and then as we rolled his wheelchair into the clinic the next day, her hope for a Cure was dashed. (Side note: People around that time kept telling us that we just needed to get used to a New Normal, and every time I heard that, I wanted to scream, “TO HELL WITH THE NEW NORMAL! I WANT OUR OLD NORMAL BACK!”)

Our brother Lee has said that he saw the changes in Dad as so blaring when he saw him around Thanksgiving that he felt in his gut that Dad was not going to get better.

For my sister Jennifer, the Turning Point came on the afternoon when she was at our parents’ house alone with Dad before his second hospitalization -- not when he fell, but after that, when he was in the bed, looking so frail, so helpless, and with his breathing so labored that she felt compelled to videotape it so that she could believe it, process it, and document it.

The Turning Point for my sister Nancy came a little later in our story, on the day after we brought Dad home from the hospital for the last time, as she listened to his voice get weaker and weaker and as she watched him, wrapped in blankets as if he were in a cocoon, being picked up by our husbands so they could move him from the bed to the couch. He was so afraid that he wouldn't be able to communicate with us for much longer. We were so afraid that he would fall off the couch because he could hardly move and that it would hurt him to move him. We were all just so incredibly afraid.

The Turning Point for me came as a result of a one-two punch on the second full day after Dad was moved out of the ICU into a regular room, three days before New Year’s Day and two days before we took him home. The oncologist came by for his morning rounds and told Dad “the only thing in the way of going home for you is your strength.” He ordered more OT and PT, and thus the gauntlet was thrown down; so depleted and yet so determined, Dad began talking about how he was going to exercise and eat, “even more than before,” he said. “I just want to do whatever it takes so that I can go home!”

That afternoon, the OT stopped by and, with Dad lying in the bed, had him do 15 minutes of arm exercises (“Is that IT??” I wrote in the margin of the Notebook when I realized the session was ending after that.), and then the PT came in and helped Dad sit on the side of the bed for ten minutes. After she had left, Dad realized that was going to be the sum total of his rehab activities that day, and he said, “I really think if I am going to have any chance of getting out of here, I should get up out of the bed.” I summoned the nurse and a nursing assistant and told them of our plan. Both were hesitant and doubtful, but, I thought, they don’t know my dad and they don’t know me – we ARE going to make this happen.

Gritting his teeth and with almost total support to keep his legs from buckling and then with full support to slide his feet one at a time across the floor, Dad made it from the bed to the hospital-grade recliner before collapsing into the chair. “Let’s see if you can stay up in the chair for 30 minutes,” the nurse said, as she and the tech left the room. The next half-hour seemed excruciatingly long; my sister and I tried to cheer Dad on while he gutted out each minute. He said he was cold and that he felt “achy all over,” and then, when his time was up and after we had helped him back into the bed, he got a terrible muscle cramp in his thigh and hip. We could actually see the muscles contracting as Dad writhed in pain after the transfer. We tried massage, we tried repositioning, we tried stretching, we tried a heating pad, and, finally, amidst deep and wounding pain, he begged for medicine. The orders on the chart didn’t include anything that would even touch the pain. DAMN the process that it takes to have to call the doctor to get permission for pain medication for a terminally ill patient. Isn’t losing control and slipping away torture enough? It took well over an hour to take away the pain from that horrible cramp in Dad’s muscle, and, as we learned over the next few days, the trauma of the episode could not be erased from his memory, taunting him and making him afraid after we left the hospital that we would not have enough medicine to temper his agony if the pain came back.

Despite the pain and exhaustion, Dad took in a lot of calories that day, so much that by that evening he was nauseous from having eaten so much more than he had been used to eating. When the dinner tray came that night, he said with a mixture of dread and fear in his voice, “Oh, no! Not food again! I can’t stand eating – it makes me hurt worse!”

Watching him that day, I could see the anxiety and the weight of the burden of the task that he saw before him; eating had become not just an obligation and anencumbrance but an insurmountable challenge for him. Over the course of the days before, he had started apologizing and making excuses about not eating whenever I walked into the room, and, when I saw the deep remorse and the sorrow in his eyes, I knew it was not really a choice that he could make anymore. His body just could not do it. “The Deal is off,” I told him that night with tears in my eyes. “I am so proud of you for trying so hard to eat, and from now on you can eat whatever you want, whenever you want, or not.”

“Will I still get to go home, though?” he asked me earnestly.

“Yes, Dad,” I told him. “I just don’t want you to worry anymore.” And then I turned away from him to hide the flood of tears that streamed down my face, an outpouring that would go on for the next week as we made the arrangements to bring Dad home, as we cared for him at home as his condition continued to worsen, and as we watched him slip away.

Chapter Nine, Part 2: Supposed to Be Better

2016-05-16T22:35:00.001-05:00

And so the New Deal was struck, the PICC line was placed, and – thankfully, I thought – our regular oncologist was scheduled to come back on duty after the long holiday weekend.

The kids made posters and signs for Dad, which we taped all around his hospital room. Our focus became encouragement, even more than before and even over medical intervention, and I believed that together we could WILL Dad to get better.

Making "We love you, Gramps!" signs

Overnight at that point, Dad’s emotions went from worry and sadness to anger to determination, with the latter aimed at eating. Dad talked almost constantly about trying to eat, at one point even saying that he felt like his appetite would come back if he could just go out to eat. (Luckily, he acquiesced in that effort and agreed to eat some food that we got “to go” from a restaurant outside the hospital.) The PICC-line was being used for blood draws and IV meds, but, when we asked when the supplemental feeding would begin, the night-shift nurse told us it wouldn’t be until later in the day at the earliest because a “nutritional support” consult had to be completed first, and she added that, if Dad continued to eat like he had been overnight, “the port probably wouldn’t be used for nutrition because it’s better for him to get calories by eating.”

Right at 7 a.m., our regular oncologist came in to see Dad for his morning rounds, his first time to see Dad in four days. In what would become the second-to-most anger-inducing statement made around me by a medical staff member during the entire time Dad was sick (the first being said by the stand-in oncologist said on Christmas Day) , the oncologist jokingly said to Dad, “What happened? You were supposed to be better by now!”

Although I remember these words as if they had just been spoken, I don’t remember what I said back, if anything. I do, however, recall what I WANTED to say: “He was supposed to ‘get better’ from the surgery, from rehab, and from the Avastin! We were supposed to be taking him to a Grizzlies game tonight instead of being here in the hospital. We were supposed to have a memorable family celebration on Christmas at my parents’ house. In fact, if we’re talking ‘what happened’s’ and ‘supposed to’s,’ he was supposed to live to be 100!” There were so many things that were supposed to have been happening, but none of it was going according to plan, and at that point none of it even mattered; we just wanted the doctors to figure out how to get Dad feeling better.

After his opening statement, the oncologist looked at us sitting in the tiny, hard chairs around Dad’s bed in the freezing cold ICU room and said he wasn’t sure why Dad had been admitted to the unit in the first place. He chortled at the surgical masks we were all wearing and said that, since Dad’s blood count was in the normal range even when he was admitted to the ICU, the neutropenic precautions hadn’t been necessary during any of the time we’d been there.

With regards to the PICC line, he said, “That type of feeding will disturb blood sugar levels; it’s mostly sugar.” I wanted to scream, WHY IN HELL ARE WE JUST NOW FINDING THIS OUT? My blood pressure was rising by the second. I so desperately wanted to keep liking this guy, I wanted to trust him, and I wanted him to come in and clean up the mess that I felt had been created in his absence.

The oncologist seemed to think that what had been being done while he wasn’t around was “overkill,” which of course pissed me off beyond belief. (I don’t know if it made me madder to think that things weren’t handled correctly in his absence or just that he seemed to be second-guessing after his long holiday weekend.)He discontinued several medications and decreased a few others. He said he was adding a sleep medication and writing an order for anti-anxiety meds to be given as needed. He said that he wanted Dad to go to a regular floor immediately, for his comfort and for ours and because he felt the ICU-environment “wasn’t working for him.” (No kidding!) And then I asked him the question I knew Dad wanted me to ask the most: “What’s it going to take for him to be able to go home?”

“I want his blood pressure to be in a safe range, I want him to be getting up out of bed, and I want him to be eating regularly, and then I’ll discharge him.”

“OK!” Dad said enthusiastically, as if all of that was easy.

At the time, I thought that the oncologist thought Dad was about to get better, and so I viewed these changes as a positive step in the right direction. Looking back, though, I think at best the oncologist was short-sighted, under-informed, and/or thinking wishfully instead of really seeing Dad and his condition as they were; at worst the guy was throwing his hands up and had stopped seeing intensive intervention as being necessary or warranted.

By mid-morning, physical therapy had been ordered, the catheter had been removed, and Dad had been transferred back to the oncology floor. I thought Dad would be encouraged, but he kept forgetting how much longer he had to be in the hospital and what had to happen before he could go home, and he was discouraged and disappointed each time he was told that he probably wouldn’t be able to go home for several more days.

Not long after we got to the new room, the Physical Therapist came in, and together she and I helped Dad sit up on the edge of the bed for six minutes, an effort that completely exhausted and dispirited him. Following that, someone from Pharmacy came in and told us that TPN feeding would begin to be administered through the PICC line later that evening. When I pressed her for details as to why it was going to have been more than 24 hours after the line had been placed before the supplemental nutrition would be started, she didn’t really answer the question but did enlighten us to the fact that, evidently as was standard for all patients who’d just gotten a PICC-line, Dad would be “started slowly” on the TPN feeding, at first getting 700 calories per day and then building up to a maximum of 1000 calories per 24 hours. This was NOT what we had been led to believe before the line was placed. We were told that the PICC line would provide an opportunity for much greater caloric intake. I was enraged, but I gritted my teeth and stayed focused on Dad. What was done was, well, done, and maybe, I reasoned, the extra calories that he could get that way would help him get strong enough to get the hell out of that place.

For the first several hours that we were in the new room, the nursing staff seemed to struggle to accommodate Dad’s needs. Because it was still considered a “holiday week,” the regular oncology floor was shut down, and we were actually on the bone marrow transplant ward. Apparently, the nurses on that floor weren’t at all used to patients with neuro-like problems; most of the other patients there were independently walking laps with their IV-poles trailing them, and some were even going back and forth between their rooms and the little patient kitchen to get snacks or ice for themselves.

But we were floundering. The removal of the catheter seemed like excellent news at first, but it soon became a source of great distress for Dad and for us. Contrary to the oncologist’s apparent idea that Dad would regain his mobility and his strength as soon as he got out of the ICU, Dad, of course, was still bedbound. In fact, he couldn’t even move himself at all in the bed, much less sit up or stand. And thus maneuvering to use the bedpan or the urinal was difficult, to put it mildly (and, at that point, the idea of his using a bedside commode or getting up on a walker to make it to the toilet in the bathroom seemed like looking at the finish line of a marathon from the vantage point of mile one).

Humiliatingly and frustratingly to him, Dad had more than one mishap with the urinal. We were ready to do whatever it took to help him, but at the same time we wanted to try to preserve whatever was left of his dignity. When Dad’s sheets got wet the first time, I pushed the call button, and, when we hadn’t gotten a response more than 5 minutes later, I went out into the hall, found the nurse, and told her that Dad needed to have his sheets changed. “They’re in the linen closet,” she told me with a wave in that general direction, as if that solved the problem.

Fortunately, at shift change we were once again blessed by the Nursing Assignment Fairy; this time the nurse that swooped in to support us was John. Dad was still "giving it his all" to eat; when we clued John into the fact that we were very concerned about Dad’s caloric intake, John offered lots of “extras,” some of which Dad said “yes” to and then ate (including a Snickers bar). Without even being asked, he brought extra blankets because Dad continued to say he was cold, and he provided extra pillows to prop Dad up so that he felt warmer and more secure.

My 16 year-old daughter and I stayed with Dad for the first shift that night; Dad chatted easily with her and even said, “If you can find some popcorn and a Diet Coke, I wouldn’t mind sharing it with you while we watch something on TV.” With John’s help, she procured the snacks, and together they watched “American Chopper” and then a show about hair transplants while he quizzed her about her plans for college.

Throughout his stay in the hospital this second time around, including the four days in the ICU, pain from the bed sore on his lower back had continued to plague Dad. John was excellent at gently re-positioning Dad in different ways in the bed so that the pressure was taken off that area; he made an effort each time he came into the room to explain what he was doing and why to Dad and to us and even had me demonstrate my understanding of skills like propping Dad up with lots of pillows and rolled blankets. He wasn’t just acting as a nurse; he was also a teacher and a friend.

About 9 p.m. that night, John came in to give Dad his night meds, which, without notice to us by the doctor, had been changed to include a psychiatric medication called Restoril. While I wanted Dad to be able to sleep at night, I was very concerned about this choice of medication because I knew that it also affected the muscles and of course alertness and that it could also have several side effects for someone as sick as Dad was. I was also angered that the orders had been changed without any type of discussion with the doctor. It was just one more example of the mis-communication (or non-communication) and the half-assing that was going on WAY too often.

Dad swallowed that pill and his anti-seizure pills, and, shortly thereafter, he began to get groggy. His voice got so soft that we had to lean in close to him to hear him; with tears in his eyes, he said he wanted to be sure that Mom knew how much he loved her and that he couldn’t make it without her. He patted the space in the bed beside him – his sign for “I want someone to lie beside me” – and my daughter carefully hopped into the bed and tucked in next to him as he drifted off to sleep. About an hour later, my sister Jennifer and her husband arrived for their shift, and, without saying a word, Jennifer and my daughter seamlessly switches places without disturbing Dad. There would be more sleeplessness, more anxiety, more struggles with the urinal, and more medicine that night for Dad, but at least he knew beyond a shadow of a doubt that his family was there with him and, despite what was going on with the medical staff or anything else, that that’s where we planned to stay.

Remembering the days in the ICU and then in that room on the BMT floor, I remember so well feeling so impotent to stop what was happening or to do anything that truly seemed to be helping Dad. I am certain that the care at that hospital in general must be better than what we experienced, but, except for the few instances of competence and compassion from a few member of the nursing staff, it feels like Dad's care was awful from the moment he was wheeled into the ER. Having worked in health care for so long, I know what can sometimes happen – arrogant doctors shuffle in and out, people just work their shifts and do the bare minimum, revolving staff members see patients (and their families) as a short time problem to endure. It’s not right; it’s not fair. But Dad had been caught in the crossfire just the same.

Chapter Nine, Part 1: The New Deal

2016-05-16T22:33:00.000-05:00

After the procession of doctors that came to consult on Dad’s case on the afternoon of Christmas Day, Dad saw me crying. “What’s wrong?” he asked me, with alarm in his voice.

“I’m just trying to figure out what to do to get you better, Dad,” I told him.

“Have you come up with anything?” he said hopefully. I sat down on the edge of his bed, looked him in the eye and said, “I think you have to start eating, Dad. I think you haven’t been taking in enough calories to get stronger. I think you need to take control of your recovery by finding a way to make yourself eat.”

The room was quiet for a minute as Dad considered what I had said, and then he proclaimed, “OK, then. It’s a deal. I promise; I will start eating more, and then after that I can go home, right?”

“That’s right, Dad. It’s a deal.” Through tears that I hoped he didn't see, I told him goodnight, and then my sister Jennifer took over. I was planning to be back early in the morning so that I could catch the doctors on their morning rounds.

Jennifer reported that Dad was chatty overnight. Despite saying many times that he was very tired, as usual he did not sleep at all. He said he realized that he was confused and that he didn’t want to tell the doctors because he thought then they wouldn’t let him go home. He dutifully ate some graham crackers and peanut butter and then some ice cream; it was plain to see that the effort he had to exert just to chew was utterly exhausting to him.

Halfway through the night, my sister Nancy took a turn with Dad. “He is trying so hard to eat,” she wrote in the Notebook. Dad told Nancy that eariier that night he'd been at the hospital all alone. Of course, she told him that he hadn’t been by himself, but it still made us so sad to think that he didn’t realize we'd been right with him the whole time. “I am very concerned about how sick I still feel,” he said. “I don’t feel like I’m getting any worse, but I’m definitely not any better, either.” He told Nancy that he couldn’t wait to see how proud of him I was when I found out how he had eaten during the night, a comment which, when I look back at it now, almost breaks my heart. I can only hope that he knew that I already was as proud of him as I could possibly have been for so, so many reasons and that he didn’t have to strike a deal or hold up what he thought was his end of the bargain for me to be proud.

I got back to the hospital just as the sun was coming up, and right away Dad told me to write down a list of things that he wanted to remember to ask the doctor, most of which centered around the fact that he wanted to go home. He said he knew that he needed to continue to “eat better,” and he listed several foods that he said he would try to eat that day, including toast and grits, a Diet Coke and a grilled cheese sandwich from Sonic, and a hamburger with mustard. “No cheese and no mayo on the hamburger,” he said. “Those have TONS of calories.”

“But Dad, we’re really wanting extra calories for you now,” I reminded him.

“Well, I guess I’ll have cheese on there, but I really don’t think it’ll be good with the mayo,” he said adamantly.

We got another visit from the consulting neurologist mid-morning that day; the doctor took about five minutes to do his “neuro checks” and then declared that Dad had “gotten better” since he’d seen him the day before. (“Better in that he is slightly less confused, but not better in terms of pain, eating, or sleeping, plus now Dad is really starting to realize just how sick he is,” I wrote in the Notebook after the guy left.)

Shortly after that, the stand-in oncologist reappeared and informed us that he was “pleased with the progress made over the last 24 hours.” He said Dad should not be given pain medication for problems with sleeping. He would allow Dad to take Benedryl for sleep and anxiety problems, but that was it. He said Dad could probably be moved out of the ICU in the next day or two but that he felt Dad needed to "stay put for the time being" because he was still at risk of choking and because of the concerns about Dad’s heart. Um, his heart??? The last we’d heard about the PVC’s on the heart monitor had been the day before from the cardiologist, who had seemed confident that there weren’t any true heart-related problems going on. “I’ll have his blood counts rechecked today, too,” the guy said casually, still talking as if Dad wasn’t there and/or couldn’t understand what was being said, “but I expect to see improvement on those numbers too.” And with that, he was off.

Shortly after that, the blood tech came in, and, as had happened a few times over the past few days, she had trouble finding a vein. The nurse had informed us that long-term steroid use "often makes the veins brittle and causes them to roll, both of which makes it hard to get a needle inserted." Through the multiple needle sticks, Dad grimaced but didn’t complain, and eventually the technician had partial success. She was able to obtain one of the two vials needed for the labwork. Dad winced as she put band-aids over the multiple places that she’d poked on Dad’s hand and arm; it was the ripping off of the tape and bandages that he hated the most, yet another thing for him to be anxious about and to cause him pain.

About an hour later, an x-ray tech brought in a portable x-ray machine to take x-rays of Dad’s chest. Jennifer and Peter helped the technician position Dad so that the films could be taken, and they noted in the Notebook that Dad’s rib cage was startlingly apparent. Despite all of Dad’s talk about what he was planning to eat that day, he continued to say he was “zero hungry” and even "I don't think I can stomach anything.”

"Sorry," he kept saying, with a guilty look on his face. And despite the doctors’ positivity about his improvement, we didn’t see it. We saw a man who was exhausted, frustrated, worried, and still somewhat confused, a man who was telling us that he just wanted to go home.

It was at this point that the idea of supplemental feeding was brought up. As part of the steps we were discussing, this is what I wrote in the Notebook …

I did not want supplemental feeding to be started. For the first time in Dad's treatment, there was disparity amongst us – really, at least from my perspective, between everyone else in the family and me. That was its’ own special kind of hell.

I knew that each of us wanted more than anything to figure out some way to help Dad, and I realized that having a consensus was crucial. It wasn’t that I disagreed with the fact that Dad somehow needed to get nutrition. I just wanted SO MUCH for it to be in a typical way, through eating on his own. I knew him as a super-determined man, a person who was more motivated and more physically fit than anyone else I knew, and I wanted him to be able to use his WILL and his STRENGTH to pull through this, even though I could plainly see that wasn’t possible. I was horrified by the visual in my head of him having another procedure and of how helpless he was in the bed. I didn’t trust anyone on the medical team, and I felt like even they weren’t on the same page about what the best thing to do to help Dad was. I knew that inserting a PICC line would be risky and scary and painful for Dad, and so NOT what my strong, proud father would have wanted. Hell, it’s not what any of us wanted for him, but we wanted him to get better more than we didn’t want him to have another procedure.

I see now that we were at different stages in our anticipatory grief, which, especially coupled with the worry and fear attached to the uncertainty of Dad’s condition and about our future as a family, was threatening in a way that even the cancer hadn’t been. I saw the big picture, the goal of somehow stabilizing Dad, and I knew we had to get there in any way that we could; I just couldn’t get past the terrible gnawing in my gut that I couldn’t quite identify, and I couldn’t shake the feeling that Dad was slipping away or even that quite possibly he was losing his will to fight.

A PICC line, by definition and per its acronym, is a peripherally inserted central catheter. It's like a large IV that goes in through the upper arm and is fed to the vena cava near the heart. From the way that I remember it, the idea of the PICC line was first brought up by Dad’s ICU nurse, who, like everyone else around, was concerned about his nutritional status. The nurse told us that an NG tube is usually the better option with which to start supplemental feeding but that, since Dad couldn’t even keep from pulling out the oxygen tube in his nose, she felt that a PICC line would be better.

As well, when considering an NG tube (which would go in his nose, down his throat, to his stomach), we also had significant concern about Dad’s medical history, which involved a botched sinus surgery by an ENT in the 1980’s that resulted in a orbital bone (under his eye) accidentally being scraped out during the procedure. The concern was that, instead of following the intended route, the NG tube would coil in the extra space in Dad's sinus. [While I was in college, he’d had reconstructive surgery by another surgeon to hold his eye in its socket because of that screw-up by the first ENT, which sucked enough already, but I never dreamed that the malpractice from the first surgery would cause Dad more pain, more risk, and arguably a more rapid decline at the end of his life this many years later. Remind me to find that ENT and punch him straight in the &^%@ one day.]

Thinking back to the decision of whether or not supplemental feeding support should be provided for Dad and, if so, how it should be done, it seemed like we were getting multiple opinions from many different sources. I remember standing just outside the glass wall of Dad’s room in the ICU and, despite the fact that none of the doctors on the case had ever even broached the subject, listening as his nurse, another nurse, and the PICC-line nurse talked about how they thought he should get the procedure done. “With a PICC line, he’ll be able to get nutrition and medications as well as blood tests done without additional sticks,” one of them offered. Dad’s nurse said that she could call and get the oncologist to order the procedure if we wanted. I wanted to scream, “NO WE DON’T WANT IT; WE DON’T WANT ANY OF THIS! WE WANT HIM TO BE WELL!” Why was this being discussed by the nursing staff and not the doctors that were involved? Why was this decision being put to us, or, specifically, to my mom, as if it was a now-or-never proposal? Why the hard-sell, all of a sudden? The room was spinning. I didn’t know the answer to those questions, but I didn’t know how else we were going to get Dad better. All I could do was pace the floor, cry, and hope that signing off on this procedure would be the right choice for Dad.

Chapter Eight, Part 6: A Blue Christmas

2016-05-16T22:09:00.002-05:00

On the afternoon of Christmas Day, a parade of specialists came to see Dad in the ICU. Dad continued to be somewhat confused with bouts of head, stomach, chest, and/or throat pain and still with no appetite, although he ate some yogurt, a popsicle, and some ice cream with encouragement from us over the course of the day.

All of the consulting doctors that day were new to our case, and we asked each of them to give us their opinion about what was causing Dad to be so sick and their thoughts about what should be done to help him. When the neurologist came in, he asked Dad the standard orientation questions, and Dad seemed fairly clear except for the fact that he thought he was 41 years old. The doctor gently pointed out his actual age to him and then said that confusion as well aslethargy and weakness can stem from a severe blood infection like Dad had been fighting and also from wildly fluctuating blood sugar levels, which had been also been going on with Dad. Dad listened earnestly and then asked, “Do you think I’m going to die soon?”

I felt my breath catch in my throat. “No,” the doctor responded evenly. “In fact, as far as I know, all of the doctors here think you are going to get better.”

“I thought I remembered that someone told me this morning that I am dying,” Dad said.

The doctor looked him straight in the eye and said, “I think your memory isn’t all together accurate right now. Just a minute ago when I asked you how old you are, you said 41, and that’s not right, is it?”

“No, I guess it’s not,” Dad said.

“I think some of that confusion is what’s making you wonder about dying, too,” the neurologist told him gently. I watched Dad’s face, and I saw him trying to accept that news, trying to believe what he was being told, trying to swallow that pill, trying to get past his fear. I could tell by the look on his face that he was only partially convinced, and I so wanted him to see that he needed to trust us when we told him that he was going to get better.

The doctor reinforced to Dad that nutrition was very important and that he needed to eat in order to get better. Dad agreed and said that he would try harder to eat even though he was “zero hungry.”

Also in the lineup that afternoon were a neurosurgeon, who told us that based on the MRI and CT scan on file he agreed that the tumor seemed “stable,” and a cardiologist, who noticed on the latest lab report that Dad’s ammonia level was abnormally elevated, which can cause confusion, loss of appetite, stomach pain, and weakness. [Side note: I later learned that an elevated level of ammonia in the blood can be a sign of kidney/liver failure, and I wonder now if this was the first sign that Dad’s body was starting to shut down.] The neurosurgeon said that he was concerned about the high dose steroids that Dad was taking, and he made a slight adjustment to the dosage in hopes that it would help improve Dad’s condition. Because we were watching over Dad like hawks and because we were searching so frantically for an answer, we asked the cardiologist about something that we had seen come up on the monitor readings over the past 24 hours for the first time: PVC’s, or premature ventricular contractions, otherwise known as an irregular heartbeat. A PVC can occur for many different reasons, ranging from the onset of a heart attack to things like a side-effect of certain medications or from stress and exhaustion. This reading explained the chest pain that Dad had reported (and that hadn’t really been addressed by the medical team) since he had been admitted to the ICU, and we were concerned that it signified a problem with Dad’s heart. The cardiologist said that he felt it was related to anxiety and possibly to nutrition/hydration issues but that he would investigate it further should the pattern continue.

Evidence of a PVC on the heart rate monitor

Back at my parents’ house, we had the minimum of tradition covered for Christmas. We took shifts spending time with the kids, each of whom also took a turn sitting with their Gramps in the room in the ICU that day. We ate in the hospital cafeteria during the limited “special holiday hours” it was open that day (hours that are not so special to family members of patients who are sick enough to be in the hospital on a holiday); we were so sad and so worried, but, as we had been, we were together in our effort to help and protect Dad.

Dad, of course, continued to be friendly and polite to everyone with whom he came into contact. In between visits from the doctors, Dad chatted briefly with the nurses and aides. Even when he was in pain, he doled out thank-you’s and was obviously trying to keep what he considered to be complaints to a minimum. At one point, he saw a woman mopping the floor just outside the room next to his on the unit. He strained to move his arm from underneath the covers and then waved at her. She was busy working and didn’t see him, and so he waved several more times. Finally, he turned to my sister and me and said, “Why isn’t Kathy waving back?” My sister and I exchanged a look and then asked him for clarification. His explanation clued us in to the fact that he thought it was my sister’s mother-in-law and that he couldn’t understand why she didn’t stop mopping long enough to wave back. He seemed convinced, even though the cleaning lady looked nothing at all like Kathy. We decided to let him have this one and told him that she was probably just really busy, which he accepted, thankfully since we knew he was exhausting himself with all of the waving.

Dad continued to ask for reassurance that he wasn’t dead; he seemed to be trying to “catch” each one of us alone to ask us again, just to make sure we were all SURE. And even then, even after being told by each of us whom he trusted so much and by all of the medical staff whom he respected, I could see the doubt in his eyes and hear the uncertainty in his voice. It wasn’t like he thought we were lying to him; it was as if he was convinced that we didn’t really have all of the information, that we weren’t clear on all of the facts, and that we just didn’t know what we were talking about. We had several surreal conversations and exchanges with him about being alive vs. being dead; a few times Dad asked, “How will I know that I’m dead?” Finally, I pointed out the pulse oximeter that was affixed to his index finger and told him that the little red light on the device was proof that he was alive. I wasn’t sure he would buy it, but evidently he did because from then on he kept a close watch on the light on his finger.

But still, Dad wasn’t done with that conversation. Death and dying were very much on his mind; it was like he couldn’t shake the thought or the feeling, much like his body couldn’t shake whatever was going wrong with it. Late on Christmas night, my husband, my mom, and I were standing guard over Dad in his tiny, freezing cold room in the ICU. The three of us had our masks and gloves on to protect Dad and our winter coats and hats on to keep us a little warmer. Dad’s hospital bed was in the middle of the little room, pointing towards the nurses’ station and facing the sliding glass doors. Behind him was a window that overlooked the hospital grounds. I looked out the window and saw snow coming down hard; it was a white Christmas indeed. A wave of despair hit me; I was so sad that Dad couldn’t see the big, beautiful snowflakes that were falling just outside his window. For a second, I considered trying to turn his bed around so that he could see it, but then I realized that he was so sick and so miserable that he just couldn’t even care about anything else. Like us, Dad didn’t need Christmas presents or money or material things at all; he just needed his family and their love. My eyes went from Dad’s face to the window and back, and then Dad said, “What’s it like to die?”

Somehow the room got even quieter than it had been a second before. As we had all been doing since Dad had gotten sick, Mom started to respond to Dad by reassuring him that he wasn’t going to die, but, for some reason, I felt an urgency to address his question directly. Trying to piece words together in the best way that I could, with a shaky voice I said, “I think you just stop breathing, and then you don’t hurt at all anymore. You won’t be cold, and you won’t have anything to worry about; you’ll just be at peace.” I had a gut feeling that talking about more spiritual things would push past the boundaries of what he was willing to think about in the moment: I was hoping to target the things he seemed to be most afraid of; I was hoping to comfort him even though I really had no knowledge or basis with which to do so. I wish I’d been more prepared; I wish I’d been more eloquent. It’s one of those times in life that you can’t rewrite the scene, you can’t take back or add words, you can’t do it over. I just had to hope that it was enough to give Dad the peace he seemed to be so desperately seeking.

Chapter Eight, Part 5: The Fight

2016-05-16T22:04:00.002-05:00

While Dad was having the emergency CT scan, the ICU nurse told my mom, my sisters, and me that we would have to observe Neutropenic Precautions, meaning we had to scrub, gown, and mask to enter Dad’s room. OK, I thought, we can do that. And then she dropped the bomb: she pointed to a sign on the wall that listed visiting hours in the ICU and the one-visitor-at-a-time rule. Feeling panic rise up in my throat, I told her that Dad was unable even to use the call button to ask for help and that, unlike other patients, he rarely slept. I told her that he didn't just want us to be there with him, he needed us there, and we needed to be there. She said the only time they will make exceptions to the rules is when a doctor had written orders to that effect. After a little more pleading by us, she called and made our case to the stand-in oncologist Dr. M, who agreed to write an order to allow us to stay with Dad around the clock, with up to two of us in the room at a time.

When they brought Dad back from CT, the nurse said he was not allowed to eat or drink anything, but she could not give us a reason. My sister eventually argued her down on the issue, but in the meantime Dad was cold, thirsty, anxious, and exhausted. A little while later, Dad started to complain of severe stomach and chest pain, and testing for heart-related problems was kicked into high gear. WHAT IS GOING ON? we wondered, but we tried our best to keep the fear from our faces as we assured Dad that the doctor was going to figure out what to do to make him feel better soon. After some additional blood work, Dad was given IV pain medicine, which knocked him out for a couple of hours, during which time my mom, my sisters, and I huddled to revise the schedule so that each of us could be there for as much time as possible around the clock, with at least two of us there at all times. We were launching into survival mode, for Dad and in some ways for ourselves as well.

The unit was freezing cold, and when we asked if the temperature in at least our room could be adjusted we were told no. We kept Dad bundled with extra blankets, and we kept our coats on, at times even wearing gloves and hats in the room too.

To add to our problems and concerns, snow was really coming down outside, and the prediction was for snow and ice to accumulate even more overnight. Our husbands and children were traveling from out of town, and we were all driving between the hospital and my parents’ house in shifts, at all hours of the day and night. In addition, we had been so involved with all that was going on at the hospital that none of us had had a chance to get to a grocery store to buy food to have, and, now that night had fallen on Christmas Eve, stores and restaurants were all closed until the day after Christmas. We were so consumed with the precariousness of the balance of caring for Dad and taking care of everything else that had to be done that we were overwhelmed by logistics, and the icy roads and that lack of sleep and stress that we were all experiencing weren’t helping any. We ate dinner that night out of the vending machine in the ICU waiting room, taking turns eating and sitting with Dad, so full of worry and sadness that we didn't even acknowledge the crappiness of our Christmas Eve meal.

At the nursing shift change on Christmas Eve, Dad’s new nurse came into his room and introduced herself. Her name was an unusual one, and, because she thought Dad was asleep, she spoke to us very quietly. A few minutes after she left the room, Dad opened his eyes and said, “Did she just say her name is Worm?” We told him no and commented that that would be a really strange thing for someone to have as a name. Dad, as usual, had a different perspective, and he scolded us by saying, “She can’t help what her parents happened to name her if her name is Worm, and she seems nice.” Point taken.

Like all of the nurses we encountered on the ICU that weekend, “Worm” was mostly nice and usually efficient but very business-like and not what you would call "warm." At times, it seemed like the nurses on the unit wished that Dad would just go to sleep and that those of us who were extras on the set would exit, stage left. Like we had the first time Dad was in the ICU around the time of his surgery, we tried to fly low and make nice with the nursing staff, but we weren’t about to have Dad take a hit just for the sake of niceness. Several times, we had to remind the nursing staff about certain medications that Dad was supposed to be getting on a specific schedule, including the fourth in a series of five shots of the Neupogen that was ordered to be boost his immune system. Because the temperature in the room was so cold, we had to ask for extra blankets fairly often. We were the only family members on the unit the majority of the time, and, time and time again, we commented amongst ourselves that if family members weren’t allowed to be there as much as we were with a patient like Dad, in the best case scenario, that person would be neglected at times, and, in the worst case scenario, the patient would be, well, a lot worse off.

Dad was very uncomfortable and anxious and at least somewhat disoriented during this time. As had been going on throughout his hospitalization, it seemed like every half hour or so a nurse or technician had to poke or prod him or – the worst for him – tear off a heart monitor lead, medical tape, or a band-aid. Even just having someone move him to reposition him in the bed, to put a bedpan under him, or to put a thermometer underneath his arm was extremely painful for Dad, and having hair ripped off along with the adhesive was like medieval torture. He started cringing and even startling whenever someone entered the room in anticipation of the pain any procedure or action might bring. His stomach continued to hurt, and an anti-ulcer medication was added to the list of things being administered. And, although we had been told not to adjust Dad’s diet with regard to the blood sugar issue many times by many physicians since Dad had been started on the mega-doses of steroids, suddenly the hospital starting sending diabetic trays for him, some of which were “liquid only.” Dad was totally disinterested in food of any kind; we fed him ice chips to keep his throat, mouth, and lips moist. As the hours ticked by into the wee hours of the night, Dad’s frustration and anxiety levels grew; he was very annoyed if anyone made noise or talked around him, and so we started texting each other from one side of his bed to the other to communicate when necessary in the dark, cold room.

Christmas morning arrived with Dad in exactly the same state as the previous day, if not somewhat worse with regard to pain and despair. The Infectious Disease doctor came by to report that Dad’s blood work looked “normal” and that she wasn’t sure why his mental status and pain levels weren’t improving. She wrote an order to discontinue the Fentanyl patch that Dad had for pain in hopes that his confusion would clear up. Dad alternated between being discouraged and annoyed and kept saying things like, “Why can’t these people just go on?” and “I can’t do anything – I can’t even breathe right!” It was heartbreaking; it made us want to protect and help him even more, but we had no idea how to do that.

Around noon that day, Dad reported that his stomach, chest, and whole body hurt really badly. “I’m really worried that I’m not going to make it!" he said. We hit the call light button, and the nurse came in and gave him pain medicine, after which he didn’t sleep but he told us his pain wasn’t as bad.

A few minutes later, Dr. M came into the room. “I’ve got no news for you,” he said right off the bat. “I’m recommending a feeding tube for nutrition for him. It’s my guess that he’s got something else going on in the head,” and then he pointed at his own head, as if to emphasize or to clarify his point.

Wait a damn minute, I thought. This isn’t some breezy interaction in an elevator! And HOW DARE you speak about a patient – MY DAD – like he isn’t RIGHT THERE or like he DOESN’T UNDERSTAND what you’re saying about him. By the time I had processed this, though, the guy had turned on his heel and stepped out of the room. I looked at my mom and said, “I’ll be right back.”

What happened next is one of my clearest memories from the whole time we were in the hospital, maybe even from the whole time Dad was sick, and MAYBE EVEN from over the course of my whole life.

Dr. M was at the nurses' station, writing in Dad’s chart. “I need to talk to you about my father,” I told him, using every bit of restraint I could muster.

“Oh?” he said, looking up from the chart.

“We need some answers and we need some kind of action, some sort of plan. Why is he not getting better, and what do you intend to do to help him?”

“Look,” he replied, “It’s Christmas Day.” AS IF THAT WAS NEWS TO ME, AS IF THAT EXPLAINED ANYTHING, AS IF THAT MADE A DIFFERENCE TO MY DAD OR TO MY FAMILY. I came unglued.

“We are aware of that,” I told him, with tears of fury in my eyes, “but it’s not Christmas to my dad, or to us! He is miserable, scared, and so sick. I don’t care what day it is – DO SOMETHING! It’s YOUR responsibility to do something about it and to take care of him, regardless of what day it is.”

“I understand,” he said, in what could only have been seen as a very condescending tone.

“No, you don’t!” I yelled. “You can’t understand – it’s not your dad in there suffering while no one does anything to help him!”

“Ma’am, I do understand,” he said, “because I have been through cancer myself. I had prostate cancer several years ago.”

AS IF, I thought! “My dad has brain cancer!” I screamed.

He took a step back, and for a moment the unit was completely silent. I could hear the clock on the wall ticking, and I could feel the eyes of every person in the area on me, but of course I didn’t care. “I am aware of his diagnosis, Ma’am,” he said, “but I’m not sure you understand the prognosis.”

“I am very well aware of the prognosis and the facts,” I yelled as I clenched and unclenched my fists. “What I don’t understand is why you think it’s ok to dismiss him as if there’s no hope, as if he doesn’t matter.”

After several beats of silence, he came back with “Ma'am, he is receiving adequate care. I know how you feel, but sometimes patients just don’t get better.”

Oh, no, he didn’t. Quietly, but with great conviction, I told that @&$#% that “adequate care” was not good enough for my dad, that this was not the end of the road for him, that my dad was not going out this way, and that it was his responsibility as a doctor and as a human being to DO SOMETHING to help him.

“What exactly do you want me to do?” he asked me.

What I wanted to do was to punch him in the face, but instead I told him, “I want you to figure out what’s going on with my dad. I want second opinions and consults from every specialty area – cardiology, neurology, neurosurgery, and anybody else that you can think of. TODAY.”

“It might be hard to get anybody to come in to consult on Christmas Day,” he said, still ~~full of shit~~ waffling.

“Are you saying that there is no one at all in these areas on call today on staff at this hospital?” I demanded.

Finally out of arguments, he acquiesced: he didn’t answer, but he averted his eyes and furiously started scribbling orders in the chart.

I knew I had offended him, and I am well aware of the Be-nice-to-the-waiter-so-he-doesn’t-spit-in-your-drink Rule, but this was literally a matter of life and death. Christmas or not, my dad, like every patient, deserved the best care available, and I was convinced there were other things that could be done to help him. Completely entrenched in my role of Daughtering, I was taking no prisoners, and one arrogant doctor was no match for me. With that Smackdown out of the way, things started to move along a little more smoothly during the second half of our tumultuous Christmas Day.

Chapter Eight, Part 4: ICU 2.0

2016-05-16T22:00:00.002-05:00

After a day of ups and downs, the oncologist made his final rounds before the three-day holiday weekend late in the afternoon. He delivered a pep talk to Dad, who as usual “faked” how he was feeling in front of the doctor (“Doing great, Doc!”), and then the doctor asked us to step out into the hall with him. I tagged along, and my sister stayed in the room with Dad.

“I’ve heard from the nurses that he’s mentioned dying a few times,” the oncologist said, “and I just want to be sure before I leave for the weekend that you want the chart to reflect that you want ‘heroic measures’ to be taken should anything drastic happen.”

Wow, I thought, as I looked at my mom in shock. OF COURSE we want HEROIC MEASURES, I thought; we want a MIRACLE - we want him to be healthy again! We want someone to be a hero the way Dad is to us, and if that takes ‘heroic measures,’ then so be it!

“What do YOU think?” Mom asked the doctor.

“At this point, I think he is still recovering from the infection, and I expect him to respond to the treatment for that, after which we can press on with the treatment for the cancer,” he said. “So I would say we do not want a DNR [Do Not Resuscitate order] in place at this point, but I want to be sure you agree.”

“Yes, we agree,” Mom told him. “We need more time.”

Exactly, I thought, and we said goodbye to the oncologist and went back into Dad’s room.

That evening, the night nurse (unfortunately, not Meredith, who had the night off) administered two units of whole blood to Dad. As per the protocol, she gave him IV Benedryl beforehand, and as a result Dad slept soundly for the first part of the transfusion. After that, though, he was very restless and talkative, although most of what he said was “mumbly,“ as we noted in the Notebook. He had just gotten back to sleep at 3:45 a.m. when a phlebotomist (whom I referred to in the Notebook at “The Blood Bitch”) burst into the room, abruptly flipped on the ceiling light, and announced loudly that she needed to take blood. As Dad stirred in the bed, I jumped up, turned the lights back off, and told B.B. that, unless the order had been specifically written for blood to be drawn at that exact time, she needed to come back later. She retreated and returned again at 7 a.m.

The rest of that day, which was Christmas Eve Day, was a whirlwind of activity, disappointment, and stress for us. We had quite a string of visitors that morning, and Dad seemed to get more disoriented and more distressed with each person who entered the room. Shortly after the nurses’ change of shift, the stand-in-oncologist Dr. M came in to introduce himself. He said that Dad would be getting a transfusion of platelets that day and that he was increasing the insulin dosage due to the increasing blood sugar numbers that had been noted over the past 24 hours.

Next was a visit from the Physical Therapist, who tried to help Dad turn onto his side in the bed. It seemed like every movement was not only exhausting but also excruciatingly painful for him, and, after a couple of minutes of listening to and watching Dad groan and grimace in pain, she said, “I want to get him sitting up at the edge of the bed again, but I’m concerned that doing so will agitate him for several hours.” Looking at the anguish on Dad’s face, Mom asked the P.T. to come back later, and the P.T. agreed to check back that afternoon.

Next through our revolving door was a volunteer with a therapy dog. Like the rest of my family, Dad loved animals, but he seemed totally disinterested in interacting with this dog, even turning his head away when the volunteer asked if he wanted to pet the dog. “Thank you anyway, but I really just want to see my own dogs and my cat,” he told her.

Things continued to spiral downward, with Dad becoming more miserable and with his condition becoming more perilous as the day progressed. When the nurse started to give Dad a sponge bath, he yelled, “I know you don’t mean to, but you’re really hurting me! Can’t I please just skip this?” A little while later, in preparation for the platelet transfusion, she brought in the Benedryl, and two minutes later Dad was snoozing, even sleeping through a shot of 15 units of insulin, which, due to the alarmingly high blood sugar reading, was much larger than the 6 units he had been getting.

Not long after the platelets had been administered, Dad’s blood pressure and blood sugar levels started climbing so rapidly that the decision was made by the stand-in oncologist to transfer him to the ICU. “There’s just way too much going on with him,” the nurse commented, and, terrified, we agreed. As the arrangements were being made for the transfer, Dad started hallucinating; he seemed less in pain and more confused and in his own world, which frightened us even more.

Because of the skeletal holiday staffing, the Neuro-ICU was closed, and Dad was assigned to the Cardiac-ICU, or the “CCU.” When we got the word that we were moving, we hurriedly gathered up our belongings, and Mom pushed a cart with our stuff on it as I speed-walked alongside Dad in the bed, which was rolled down several long hallways by the nurse and a transport aide. I was worried that the movement of the bed would hurt Dad, but instead he called out “Whee!” each time the bed was rolled across a bump on the floor along the way.

As soon as we got to the little glassed-in room on the unit, Dad was taken back out for another CT scan ordered by the oncologist due of his worsening condition. As per the results of the scan a few days before, again no signs of bleeding or inflammation in the brain were seen, which seemed like good news but - with the improvement of his blood count - instead left everyone wondering as to what was going on and what should be done next.

Chapter Eight, Part 3: Hanging On

2016-05-16T21:58:00.000-05:00

On the second day of Dad’s second hospitalization, his nose and cheeks looked red and swollen, but his neck was a little less swollen, his pain was better controlled, and he was coughing less with the medicine and breathing treatments he had received.

When the oncologist came by for rounds that morning, he said that he expected “to see a neurological improvement as the infection started to clear,” which he expected would happen "soon, given the spectrum of antibiotics being administered." He said that he was ordering an MRI for that afternoon and that we should plan for Dad to be in the hospital through the weekend, which meant we would be there on Christmas Day.

We continued taking turns staying with Dad, with two of us there at a time. For most of the day, he was chatty, but, as my sister noted in the Notebook, his words were “mumbly,” presumably because of how weak he was and possibly linked to the pain medications being administered. He had taken in very few calories over the past few days, but he kept saying that he wasn’t hungry and he got annoyed when one of us asked him if he would try to eat or drink something.

Late that afternoon after the MRI, he requested and finished off some chicken soup, some ice cream, and a Diet Coke, and a few hours later he ate some mashed potatoes and baked apples. Each bite he ate gave me a little more hope that he would pull through the raging infection, of which we were still waiting to learn the source.

Nurse Meredith was with us again for the 7 p.m. to 7 a.m. night shift that second night. She and Dad chatted about how much she liked her job and, when she told him that she was from Bowling Green, Kentucky, about how great Corvettes were. When she commented that she thought he was doing much better than the night before, he nonchalantly said, “Yeah, I was supposed to die last night, but I didn’t so I know I am going to get better.” We exchanged looks over his head and hoped silently that his prediction was correct.

Some Christmas carolers came by and stood in the hallway just outside the door to our room singing, which got a big smile from Dad. By bedtime that night, he reported that he didn’t have any pain except for his throat and the bedsore hurting, the latter for which a special air mattress had been brought in for him.

Jennifer and I stayed with Dad that night. Not long after we had turned the lights off in hopes that it would help him sleep, he got a really frightened look on his face and started gasping for breath. His heart rate shot up; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on. Over and over, Dad told us that he was freezing, and then he started saying things that we didn’t quite understand. Despite the temperature of the room being warm and several blankets being placed over him in the bed, his teeth were chattering so much that we had to strain to understand him. “I think I’m dead,” he told the three of us, “and I’m starting to wonder if y’all are dead too.”

We assured him that all of us including him were ok, but he insisted that the reason he was so cold was that he was dead and that he thought we were cold too since we were also dead. “Is this what it’s like when you’re dead?” he asked. “I don’t want it to be cold!”

And then he said something even more puzzling: “I see Hattie, Mattie, and little Sally over there – are they cold, too?”

Wanting so much to help him, we looked at each other with wide, scared eyes. The three of us were almost lying on top of him trying to warm him up and to calm him down. After hearing him repeat the list of those three names a few times, it dawned on me that he was naming three dogs that had died years ago, and he was convinced that he could see them. Realizing that neither verbal nor physical comfort measures were not going to be effective in battling the panic and the terror, Meredith raced to get a sedative for Dad, and, five minutes later, he was resting soundly.

Afterwards, Meredith went back to the nurses’ station, and my sister and I sat in the dark room and watched him sleep. We didn’t know what to make of the episode or what had caused it to happen. Dad slept for several hours, but we didn’t – the terror he had been experiencing had been transferred to us.

The oncologist made his rounds before the sun was up on Thursday morning; he brought with him the news that, although slightly improved, Dad’s blood counts were still dangerously low and thus he would be getting a transfusion later in the day. Unlike his previous proclamation (which I had written down word-for-word in the Notebook) about Dad getting “exponentially better,” he said that recovery for Dad was going to be a roller-coaster ride, with improvements and regressions along the way, especially while we waited on the blood count to come back up.

And then came the big news: the results of the previous day’s MRI. Dr. O said that the tumor’s size was "about the same" as a month ago. Given the extreme aggressiveness of the nature of GBM, that was considered to be very good news; the fact that the tumor hadn't grown was a sign that the treatment was working. In even better news, fewer "areas of enhancement" had shown up on the MRI. which indicated there were fewer blood vessels going to (or "feeding") the tumor.

“That is exactly the goal of Avastin,” Dr. O proclaimed, but then he went on to say that Dad would have to continue to stay in the hospital until his blood count improved and that it was too soon to predict the timing for the next dose of Avastin/chemo because that was dependent on the blood count. He told us that he would be off-duty for the three-day holiday weekend but that another oncologist in his practice, Dr. M, would take over in his absence. Dr. O listed his goals for Dad for over the long weekend as having an improved blood count, eating more, requiring less pain medication, and getting up in a chair.

“Just hold on until after the transfusion, and you’ll have more energy,” he said. As he turned to leave the room, Dad, who was so exhausted that he had kept his eyes closed during the entire interaction, piped up with a cheery “Will do, Doc! Thanks for coming by!”

Right after the doctor left, a physical therapist came by, and, with the help of a staff member named Dave whom my sister and I thought was a nurse, she and I helped Dad sit on the side of the bed, which was scary and totally exhausting for him. Dad said he felt like he was going to fall, and, despite reassurances from all of us, he held on to our arms with a white-knuckled grip. Just moving from one position to another was a MAJOR effort for him, but, with his “no-pain-no-gain expression” on his face, he did it for about three minutes before he had to lie back on the bed to rest.

When Meredith’s shift had ended at 7:00 that morning, a nurse named Leah had been assigned to Dad, but for some reason there was a change in staff late that morning. Leah, although not warm or friendly like Meredith, had seemed efficient; the new nurse Jessica had started off acting just short of what I considered rude. Of course, it was one thing for someone who was supposed to be taking care of Dad to be brusque with me, my sisters, or our mom, but it was an entirely different story when that impertinence was imposed on Dad.

Helpful Dave brought ice chips, warm blankets, and Diet Coke for Dad throughout the morning. Dad, of course, thanked Dave but didn’t notice Jessica’s ~~bitchiness~~ behavior, but we did, and, after several snippy comments from her and a few long delays in responding to fairly simple requests that directly related to the provision of patient care, I told the nursing supervisor that I didn’t think it was a good “match.”

“We’re short staffed,” she informed me, as if that made the level of care acceptable.

“What about Dave, the nurse who has been helping the other nurses all day?” I asked.

“Dave is our unit secretary,” she told me curtly. “Really all I can do is for me myself to provide back up for Jessica as needed for the rest of this shift.” Um, ok then.

Lunchtime brought some chicken soup for Dad, which he ate with assistance, and also a follow-up visit from the Infectious Disease doctor, who informed us that two “bugs” had been identified in Dad’s blood samples, both of which are typically found on the skin or in the mouth or digestive system of people but which, in a person like Dad with a compromised immune system, can go haywire and result in an infection anywhere in the body, most commonly in the lungs (pneumonia), in the urinary tract, in a wound, or in the throat. The Infectious Disease doctor said that Dad could have infections in any or all of these and that the source was probably his own body.

Wow, I thought, we have put so much effort into sterilizing everything around him and limiting his contact with the outside world for fear that he would get sick, but the problem actually came from within his own body. I wasn’t quite sure what to do with that information except to feel even more powerless against what was going on; despite our best efforts, the protective shield that I thought we had put up around him was eroding a little at a time.

Chapter Eight, Part 2: Failure to Launch

2016-05-16T21:55:00.000-05:00

At admission, Mom had provided the hospital staff with a copy of the medication log that we had been using for Dad at home with names, dosages, and dosage times for each of the dozen or so drugs that Dad had been prescribed. Several of these had been switched over to IV-form and added into the IV line; a few were brought in for Dad to take in pill-form as he had been at home, which was a problem because he could barely swallow. Even after a phone call to the oncologist’s nurse and discussion with the nursing staff at the hospital, I was still concerned about the expectation that he could effectively and safely swallow pills and because some of the dosages being administered didn’t match what he’d been taking.

When the oncologist came to see Dad on the oncology floor mid-morning after Dad had been admitted, he rewrote the medication administration orders. He looked at Dad and said that, although he felt it was unlikely that the cancer had advanced at this point given the treatment protocol Dad was on, we couldn’t be sure about anything until we could get an MRI, which he felt wouldn’t be possible for at least another day or two due to Dad’s decreased level of alertness and his pain level.

His main plan seemed to be waiting to figure out what the plan was, which, as the family of any cancer patient knows, is NOT a good plan at all. Delays are Enemy #1 when dealing with an aggressive cancer like Glioblastoma, but, until we knew more about what had caused Dad to decline so rapidly in such a short period of time, waiting was really all we could do.

The oncologist told us that in addition to a blood transfusion and platelets that he was considering ordering to boost Dad’s blood count, he also wanted Dad to get a medication called Neupogen, which is a growth factor that stimulates the production and activation of neutrophils, a type of white blood cell. At the mention of the drug, an alarm went off in my head, and, upon quickly reviewing notes in the Notebook, I saw that Neupogen was listed on the treatment protocol that Dad was on from Duke under Things To Avoid. On the paperwork we’d been given at the Brain Tumor Clinic, I had scribbled a note out to the side that read, “As a growth factor, admin of this rx – potentially counteractive to Avastin.” I showed the info to the oncologist who looked perplexed; evidently, he did not already have this information, even though he had used Avastin to treat other patients before Dad.

The next move was for the oncologist to consult with the neuro-oncologists at Duke who had authored the protocol; our guy said he would get right on that and get back to us on the Neupogen. “We need to get his blood counts back up,” he said as he left the room, “and then he will get exponentially better.”

Dad had had an appointment to get a monitoring-type of MRI that very afternoon and had been scheduled to get Avastin and chemo the next day, and I was filled with disappointment that our plans had had to change. Thinking that we could get some GOOD news for a change, I’d been so focused on getting that follow-up MRI, despite the fact that I, like Dad and like the rest of my family, had developed a raging case of Scanxiety. Now that he was too sick to even get an MRI (and considering the fact that when he did get one it would be to check for problems instead of monitoring for progress), I saw that I should have been grateful for him have the chance to get the scan instead of the alternative, but, as usual, that was all only seen in hindsight. Now, instead of at least having a Plan, we were left with only a cancelled plan and confusion.

And fear. Dad was so weak at this point that he couldn’t lift his head from the pillow, couldn’t suck liquids from a straw, and could barely talk loudly enough for us to hear. He had a deep cough, and the coughing exhausted him and made his throat and chest hurt. When asked, he reported that he had a headache “in the middle” or “in the top” of his head ("seven or seven and a half out of ten" on the pain scale, he said), which of course made us think that the cancer had spread despite the oncologist’s prediction.

For the rest of that day, Dad was in and out of a medicated fog, on a heart monitor, with multiple IV lines going, and getting oxygen through a tube in his nose. In getting him settled in the hospital bed after he was admitted, the nurse had discovered a pressure sore the size of a pencil eraser on his low back. A wound care team consult was ordered, and this area was cleaned, treated, and dressed; Dad later told us that that sore hurt almost as much as his head had been hurting, another dire consequence of an impaired immune system. By late afternoon, the Infectious Disease team had ruled out viral meningitis, and over the next 48 hours cultures were going to be grown in the lab to test for bacterial or fungal meningitis, pneumonia, and other types of infection.

As hard as it had been to get through the stressful, sleepless nights since Dad’s diagnosis, that was nothing in comparison to the first night of the second time Dad hospitalized: it was the first night that I thought that it was entirely possible that Dad wouldn’t survive, not just the cancer but the night. We were lucky enough to have our case assigned that night to a nurse named Meredith, who provided exceptional quality of care for Dad and who took Dad and my family under her wing, even requesting to have Dad as her patient on other shifts she worked while we were on her floor. She provided highly commendable care for Dad and for us; she seemed to see not just Dad but those of us caring for him as her patients, and she gave us not only the physical support we needed but some much-needed emotional support as well. As my sister later said, Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and that we will always remember.

Even in the haze of the pain and the pain medications, Dad strived to be appreciative and polite. With his throat incredibly sore, he offered a husky “Hello!” to the woman who came in to empty the trash can in the room, and he gave a gravely “Thank you!” whenever one of us used a finger to hold liquid in a straw and then release it in his mouth or when we put chapstick on his cracked lips. He, of course, took an instant liking to Meredith, as did we. She bore a resemblance to one of my sister’s best friends from high school, a girl named Angie. Despite the fact that Dad hadn’t seen Angie in many years, he too noticed the similarity in Meredith’s appearance and started calling her Angie, which Meredith said she took as a compliment. “I feel like I’ve known you for a long time, too!” she told Dad, which made him smile and warmed our hearts.

Not long into her shift, Meredith said she had orders to administer Neupogen; I relayed my concerns and the earlier discussion with the oncologist to her, and she put a call in to the doctor to verify the orders. Contrary to his earlier commitment to “get back” to us on the issue, the oncologist hadn’t communicated with us at all on the Neupogen verdict, but over the phone he told Meredith that he had consulted with the doctors at Duke and they had agreed that the priority was to boost Dad’s blood counts and thus the drug should be given. This was the first of many points of confusion and miscommunication (or non-communication) in Dad’s care, but, like the rest of the family, I was grateful that the medicine was being given despite the way we’d found out about it because I was desperate to find something that could help Dad get through what I saw as a bump in the road, even if it took altering the protocol or the plan to do that.

Over the course of the next several days, I worried a lot about how and when Dad could get the next dose of chemo/Avastin; I made fervent notes in the notebook about it in between the times the oncologist came by to check on Dad. When I asked about when Dad could get it again, the oncologist said we needed to get Dad stabilized, and then he added, “Avastin has a three-week shelf life, and it’s only been two weeks since he’s had it, so we aren’t losing ground if we can get it in him within the next week.”

I wanted that Avastin for Dad like I was an addict on a street corner. I was like a boxer warming up before going into the ring, punching the air and wearing a super-tough look on his face. Maybe even growling a little: Here we come, Cancer, and we’re going to kick your ass! But I was wrong. The cancer, the treatment, the illness didn’t even give us a chance to step into the ring. We were so tired of Cancer and of tears and terror; we needed some Good News, but, other than the fact that Dad was still in the game at this point, there were none to be had. Cancer could wreak havoc on Dad’s body, but it couldn’t touch our love.

Chapter Eight, Part 1: It's Not Your Time

2016-05-16T21:22:00.001-05:00

When I arrived at the hospital that day, I hurriedly made my way to the oncology floor. When I rounded the corner and entered the room, the transformation in Dad shocked my system. Seeing him there, with his neck so incredibly swollen, fighting tears and with so much fear in his voice, there was no denying that Dad was in great peril and so, so vulnerable. The wheels were in motion to figure out what was going on that had caused this decline and this pain, but I was astounded at how slowly those wheels were turning. Blood work had been sent to the lab; they had given Dad some pain medication, but it was obviously not working at all.

In pain and scared, Dad was suffering, and it was as if the nurses who were buzzing around doing everything BUT helping him were oblivious to the depth of that suffering. I wanted to punch someone, I wanted to collapse in tears, I wanted to throw something or to throw up, I wanted so much to find something to do to help and to protect the man that I loved so very much.

Finally the oncologist arrived; he came in with the lab results in his hands and told us that Dad’s immune system was almost non-existent. “A plummet in blood count numbers doesn’t typically happen with the treatment protocol he’s on,” he said, but IT HAD. The doctor wanted more blood work, a CT scan, and an MRI to be done to see what was going on. He said he was putting rush orders in for consults from neurosurgery and infectious disease and for pain meds along with steroids and anti-seizure drugs to be administered, and he told us that he would call the room when the results of the tests were in.

After another half hour or so ticked by with Dad still in blatant distress, I went to the nurses’ station and was told that the pain meds were still en route from the lab. With every ounce of patience I could summon, through gritted teeth and with fists clenched so tightly I left fingernail marks in my own palms, I asked for a RUSHED rush and went back to wait in the room with Dad, Mom, and my sisters. At grueling long last, the nurse came in to add the medicine to the IV, and less than two minutes later Dad was in such a sedated sleep that his respiration rate was precariously low. The nurse set up an oxygen tube at the edge of his nose and left the room.

While Dad slept, we took turns watching over him and making phone calls in the hallway to update the rest of the family. When he woke up about an hour later, he said he had had a terrible dream in which he was in a little room like at a doctor’s office with the door closed. Dad said that in the dream, someone in the hallway was going door-to-door, knocking on some doors and skipping others, and he knew that the people in the rooms with the doors that were knocked on were going to die right then. Dad said he was so afraid that his door was going to be knocked on but that he wasn’t ready to die. Terrified, he waited, but the knock didn’t come. He said it was really cold there and that he hoped that when he did die that it wasn’t scary and cold. He said he didn’t want to die because he didn’t think we would know where to find him and he didn’t want to be lost.

With tears in our eyes and our hearts in our throats, we told him that we were going to find out why he was so sick and then we were going to get him the medicine he needed to get better. “It’s not your time, Dad,” I said insistently, desperately, with tears running down my face.

A few minutes later, the neurosurgeon (a different one from the one who had done Dad’s surgery nine weeks before) came in to escort Dad to Radiology to get a CT scan. Since I’d gotten Jennifer’s call the afternoon before after Dad’s first big fall, I thought a lot about the possibility that Dad had had a stroke, which was one of the risks of Avastin, and evidently that was being considered by the team at the hospital as well.

While Dad was away, the nurse came in to tell us that we were being moved into a larger room across the hall, and so we moved the few things we had with us and continued our wait in the new room. Less than 30 minutes later, a technician wheeled Dad in his hospital bed down the hallway. The guy must not have gotten word about our being transferred to the new room, though, because he passed right by the doorway of the room where we were and then started turning the bed to get it into the room where we’d been previously.

“We’re across the hall now,” I leaned out and told the tech, who said, “Is this Bullard? I have the Bullard guy here.” He pronounced our last name like the word “bullet,” though, and Dad, who looked to be sleeping until that point, opened his eyes wide in fear and said, “What? I’ve been shot in the head by a bullet?” Not understanding what Dad was saying, the tech asked, “What?” and, trying to get clarification on what he thought had been said before, Dad kept asking “What???” in response. It took several minutes of explaining by my mom, my sisters, and me and the nurse to calm him down so that he could understand that he hadn’t been shot.

The nurse got Dad hooked up to the monitor wires and the IV lines again, and then we heard the phone ring in the empty room across the hall. Thinking that it was the oncologist calling the report the results of the CT scan to us, I dashed across to answer but didn’t make it in time.

Several minutes later, another nurse came down from the nurses’ station with the news that the oncologist had been trying to call and wanted us to know that, although the report from CT said that Dad had had great difficulty “holding still” during the scan, they felt the scan was accurate and a stroke had been ruled out. “The doctor said it could be new tumor growth,” the nurse reported, “but he feels like it’s more likely some sort of infection.”

Over the next few hours, my mom, my sisters, and I tried to keep Dad’s fear and his pain at bay; the sedative that separated him from his pain also affected his respiration rate, which made it necessary for him to have the oxygen tube in his nose, which appeared to irritate him greatly even in a sedated state. He had a low-grade fever and looked flushed, but he said he felt like he was freezing. His neck was swollen so much that he didn’t even look like himself, and it made him yell out in agony whenever the bed was jostled or a well-meaning nurse or nursing assistant adjusted the pillows under his head. It seemed like having a cold cloth on his forehead and having us hold his hands helped as much as anything else, which was very little. We were struggling to try to find a way to help him, but the only thing really to do was to wait.

Later that day, the Infectious Disease doctor came by and said they needed to do yet more blood work to run some cultures to figure out what was going on. Dad’s white count was apparently very high, which signaled infection. I pressed her for a guess as to the type of infection, and she said, “I think it’s meningitis. What we don’t know is if it’s fungal, viral, or bacterial. If it’s viral, the four of you have been exposed and you will have to be in isolation for several days before we can make sure you won’t get it too.”

We looked at each other with wide panicky eyes, and then I asked, ”Can we stay with him while we’re in isolation?”

“I don’t see why not, since the cross-exposure will have already occurred,” she said.

My sisters, Mom, and I looked at each other again and wordlessly formulated the only plan that we could at that point: batten down the hatches and hold on.

Chapter Seven, Part 4: Falling

2016-05-16T21:12:00.002-05:00

Falls separate people in a very literal way: the careless from the careful, the clumsy from the coordinated, the weak from the strong, the unlucky from the lucky, and - as in our case - the unhealthy from the healthy. After a fall, one's first instinct is to reassure everyone, including himself, that it was "no big deal," that he is "just fine." It is natural for the one who has fallen to want to “shake it off” and forge ahead as if it didn’t happen at all.

This is an exceptionally hard part of my family’s story to recount because it involves two falls for my dad that marked a turning point for him and for us, watershed moments when Dad stopped being embarrassed about needing help. After the past couple of months of having given it his all to pretend that he didn't need assistance, he was completely drained, and it was the beginning of a struggle from which we just couldn’t disengage. It was heart wrenching and very sobering to see Dad’s acceptance of help after these falls and to see that he was starting to understand just how sick he was.

No one involved in what happened with Dad over the next couple of weeks could give any reassurance that things were ok or any explanation as to why he had gotten so much worse or why he couldn’t recover. We were on our way to the front lines of the battlefield, and we were soon to learn that we had only thought we knew what difficulty and devastation were.

On the Monday before Dad was scheduled for an MRI on Tuesday and Round 3 of chemo and Avastin on Wednesday, Jennifer stayed at our parents’ house with Dad, and Mom went out for a break with her two sisters. In a few hours’ time, Dad got up and sat for awhile in his recliner in the den and ate a few bites of food at my sister’s insistence, and then he said that he needed to get up to go back to the bathroom. As we had been doing over the past several weeks to help Dad with his balance whenever he walked, my sister held onto the waistband of his pants from behind him to try to steady him. As she recounted later, he seemed more unstable and weaker physically than ever before.

A few steps into the hallway, Dad lost his footing and fell to the ground just behind the couch. My sister cushioned his fall with her body, turning the fall more into more of a controlled collapse, but once Dad was down, he couldn’t get up. He tried, she tried, and they tried together to figure something out, but nothing worked. In the midst of their efforts, the doorbell rang, and my sister could see through the windows by the front door that it was Dad’s swim coach Ashley. She motioned her to come in, and together the two of them were eventually able to get Dad up using the back of the couch for leverage. After they helped him back into his recliner, he strangely acted like nothing had happened, even though he and my sister both had been in tears and had spent at least half an hour feeling utterly helpless on the floor before Ashley had arrived. Dad had great admiration for his swim coach, and my sister said later that she thinks the fact that Ashley was there was the only reason Dad was able to muster enough strength, courage, and perseverance to get up and act like he was ok.

After Ashley left, the Occupational Therapist came for a therapy session that had been scheduled the day before. My sister told the OT what had happened, but he really didn't seem to understand and/or care. He had Dad do some hand exercises from the recliner in an extremely short therapy session in which Dad was very obviously totally disinterested and disengaged. My sister asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed. The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak. They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom. Once they got him back into the bed, Dad immediately fell into a very deep sleep. It was so undisturbed and so very uncharacteristic for Dad at the time that while he slept over the next few hours my sister sat in the bedroom on the floor and watched his chest rise and fall the whole time. At one point, she took a video of Dad’s breathing pattern on her cell phone and then called me to tell me that something just seemed really, really wrong. (By the way, the therapist hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.)

I had planned to arrive at my parents’ house the next morning, and, since Dad wasn’t hurt physically, we decided to just let him rest until then so that the three of us could get him to the appointments as scheduled over the next couple of days. In full Bargaining/Denial mode, I told my sister and myself that Dad had just worn himself out with all of the activity over the past couple of days and that he just needed some extra rest.

That night, as was the routine during that time, Mom took the first shift with Dad, talking to him about the plan for the next day which included the MRI, the visit with the neuropsychologist, and the candlelight church service. Dad was still very anxious about the MRI but seemed to accept that we would be right there with him when the results were read the following day and that we just needed to get through it and then go from there.

Around 3:00 a.m., Dad informed Mom that he needed to get up to go to the bathroom. She turned on the light and then helped him get up with the walker and into the bathroom adjoining their bedroom. Dad had been soloing in the little “toilet stall” room and did the same that night, but after going to the bathroom he lost his balance. He fell against the wall and slid to the ground. Mom yelled for my sister, who rushed in to help. It was a repeat of the afternoon fall, except that this time even two people wasn’t enough to support Dad. They tried different maneuvers and various strategies but nothing worked. Finally, in desperation, they called 9-1-1.

Thinking that Dad would resist having other people come in to help, neither my sister nor Mom wanted to tell Dad that they had made the call. The ambulance arrived in a matter of minutes, and, when Dad saw the paramedics, a look of sheer relief washed over his face. Two strong men carefully picked Dad up and put him back onto his bed. They checked him over and declared that he somehow didn’t have any breaks or bruises, but after some discussion it was decided that they should transport him to the hospital due to concerns about the decline in his physical status that seemed to indicate a worsening in his medical condition.

Mom rode with Dad in the ambulance; Dad’s anxiety actually seemed to be mitigated by the decision to go to the Emergency Room. Jennifer called me and told me to meet them at the hospital instead of at my parents’ house as planned, I called our other sister, and we each began to make our way back to the hospital.

Chapter Seven, Part 3: Battling

2016-05-16T20:52:00.003-05:00

During the days that Dad was sick, there were parts of him that were still the same from our pre-cancer days, but other things were very changed. The help that he needed was all-encompassing, exhausting, stressful, sad, and draining, but so worthwhile; the only time while he was sick that I felt like I wasn’t free-falling was when I was right by his side. His needs and what felt like the constant activity and vigilance that were necessary were very effective at counteracting our own panic and the sadness and, truth be told, in a weird way, the reality of it all. When I was with Dad, I couldn’t worry about Christmas shopping or paying bills or much of anything else; it took 100% of my focus just to meet his needs. When there were two or more of us there with him, one person was able to be right with him, and the other person could get a little sleep, make something in the kitchen, sort the medications, make phone calls about Dad’s care, do laundry, or work on setting up something else for Dad like the ever-changing therapy schedule, a doctor’s appointment, or the rare outing in the community.

On a daily basis, Dad was battling almost constant headaches, overwhelming fatigue, loss of appetite (he said, “I’m ZERO hungry!” whenever food was offered), and a pervasive feeling of being cold (he frequently asked if the heater was broken or if someone had turned down the thermostat, even though it was set on at least 75 degrees). In typical form, though, Dad mustered his strength and pushed on, as did we.

On the Sunday before the MRI and Round 3 were scheduled, my sister arrived at my parents’ house from California. Dad had been talking about wanting to go to see a movie for a while, and so my sister and Mom called the movie theater nearby and spoke to the manager about the accessibility of the restrooms there. Like the trip to Duke, it wasn’t enough for Dad just to have access to a bathroom with a stall with grab bars; he needed constant cueing to use the walker and to guard against other obstacles like a wet floor and thus wasn’t safe unless someone could directly supervise him at least in getting close to the toilet, from the toilet to the sink, and from the sink to the door to exit the restroom. As we had discovered on the way to North Carolina, most places don’t have single-stall type of facilities, and neither did the theater. When the situation was explained to the manager, though, he offered to supervise Dad on his trip into and out of the men’s room, and so the “Let’s Go To The Movies” Plan was put in motion.

Mom purchased tickets online to avoid a wait in the cold, and they loaded up into the car. In another example of a change in his usual personality and tendencies, though, when they pulled up in front of the theater, Dad announced that he didn’t really want to go. Concerned that he would regret his choice later, Mom and my sister tried their best to talk him into going in, but to no avail; thinking that it would lure him in, Mom even went into the theater and bought a tub of popcorn – Dad’s favorite thing about going to see a movie – and brought it back out to Dad in the car. Dad was insistent, though, and so the mission was scrubbed.

Once back at my parents’ house, the strain of the day’s events and the sadness of everything going on was evident in Dad; tears flowed as he told my sister and my mom that he didn’t think he would ever be able to do the things he wanted to do again. Like the workings of his memory and the sensation in his left arm that seemed to come and go and that we just couldn’t really predict or comprehend, Dad obviously had a lot going on emotionally. We were right there with him to support him, but he needed more. We felt like we were paddling against the tide, with no lifeguard in sight.

When Jennifer called to tell me about the afternoon, I put a call into the oncologist. I told him about Dad’s anxiety about the upcoming MRI scan, and he said that he would call in a prescription for an anti-anxiety medication to Walgreen’s. I asked again about an anti-depressant for Dad, and the doctor said we could discuss that at the upcoming appointment. I told him that we are all discouraged at the lack of progress. He said he had been wondering about that too and that he wasn’t sure if the Avastin needed longer to work in this case or if there was some brain damage from before or during the surgery that was either irreversible or just taking longer to heal regardless of the Avastin dosage. He said he was interested to see the results of the MRI scan, which we would go over at the appointment on Wednesday, and that he would speak to the team at Duke about the plan after that.

In the meantime, Jennifer had made contact with the neuropsychologist from the rehab facility, the tall runner-looking guy to whom Dad had responded so well before our trip to Duke, and the guy had agreed to work Dad in for an appointment right after the MRI scan on Tuesday. With the MRI at the hospital downtown, the appointment in another part of town, and then the candlelight service at a church near my parents’ house that evening, it would be a very full day, but we were hoping for a good result from all three.

Chapter Seven, Part 2: Changes

2016-05-16T20:50:00.000-05:00

As we entered the second half of December, the tag-team effort continued, with one of my sisters or me staying with Mom and Dad almost every night so that Mom would have back-up support during the night and for as much during other times of the day as we could arrange. One thing that I’m not sure I have explained clearly so far in the telling of this story is the amount of one-on-one assistance and supervision that was required during the time that Dad was sick. Physically, he needed help for everything, unless he was sitting in a chair or lying on the bed, and even then he wanted/needed to have things handed to him or arranged around him for safety and convenience. One example of this that we learned through trial and error was how to position food and/or drinks so that spills, which were so embarrassing and frustrating to Dad, were less likely to occur. Since he still had impaired sensation and strength on the left side of his body as well as visual-perceptual issues (he often didn’t notice things in the left side of his visual field), we had to place his provisions on the right. Drinks were served in non-breakable, lidded cups, and food was given to him on a non-breakable plate or in a plastic bowl. Dad didn’t seem to notice that we had rearranged the furniture so that the table that was previously on the left side of his recliner was now on the right side, and he didn’t say anything about how things were served or handed to him, which brings me to my next point …

For as many changes as there were in Dad physically, there were even more changes in him mentally. Brain cancer is distinct: it's different from other types of cancers because it most often immediately affects one’s cognitive abilities, which alters the way information is received, processed, expressed, and/or retained. And that, of course, influences very important things such as the person’s ability to fully understand the diagnosis, the prognosis, and treatment options, and this was absolutely true for Dad.

It also meant that Dad needed supervision 24 hours per day, something I’ve heard said in reference to plans of care for others who are very ill but with a different meaning in practice. In the vast majority of other situations when around-the-clock caretaking is called for, there is one blaring difference as opposed to our experience: the person who is ill sleeps - sometimes just at night, sometimes in a cyclical pattern for a few hours at a time, and sometimes even more than usual with lots of naps during the day after a decent night’s sleep - and understands that he/she should not get up and try to do things beyond their physical capabilities. That was not the case with my dad. Not only did he not sleep much, but it was not safe to leave the room or even to get in a short catnap oneself unless someone else was watching over him. He did not remember or realize that he couldn’t do the same things in the same way that he used to do, and he did not have the foresight or the patience to ask for help or to wait unless someone was right there with him to remind or cue him. Many times one of us would turn around to do something or go one room away for a minute only to find Dad trying to get up or, worse, already up either with or without his walker, a risk we were not willing to take. We felt it was our job to guard over him and to ward off whatever danger we could, and this included protecting him from himself.

As far as I could tell, Dad liked having my sisters and/or me there with him while he was sick, but he was very dependent on Mom; he wanted her to be right with him at all times and often got upset or anxious when she wasn’t able to be there. In a statement that tore out hearts out, he said that he thought that he might not be around much longer and that he didn't like it when she left because he was afraid he wouldn't be able to tell her goodbye if something happened. When he said things like that, it seemed like he did have a grasp on what was happening, but then he would say something about going to work the next day that brought the questions about his comprehension and memory back into play.

The changes that we DIDN’T see in Dad were the ones we had been assured would happen soon after the Avastin had been administered, but, besides the beginnings of improvements in sensation on some parts of his left arm, we were seeing ZERO of the good changes from the much-touted Magic Bullet.

The third week in December was set to be a busy one for my family: Dad had an MRI scheduled for that Tuesday and also wanted to go to a Healing Service at a church near my parents’ house that night. Round Three of chemo/Avastin was scheduled on that Wednesday. We had written these things down on the Dry Erase board along with notes about which of us would be there on which days and the therapy schedule, but it didn’t seem to help much at all. Time and details were not sticking in Dad’s short-term memory, yet I think he knew these things were important and so he frequently asked about what was on the agenda for the week, the day, and even the next hour. The questioning, the confusion, the anxiety, and the support that Dad needed were all just part of the whirlwind of activity that was going on around the clock at my parents’ house during this time.

I was hanging onto to Hope and whatever else I could for the time being, but I couldn't help but feel that we were in the middle of the storm before the storm. As one of my sisters said in an email about our situation at this point: “If Dad could think/process/remember the way other non-brain cancer people can, we could talk to him more about his Bucket List and how long to continue treatment and all those other so important things. I've been reading too many library books about terminal cancer and living life to the fullest, etc, etc. I hate to think that Dad knows -- somehow subconsciously or something -- more than we do. The MRI coming up is so freaking scary.”

Chapter Seven, Part 1: A Slippery Slope

2016-05-16T20:47:00.000-05:00

With all that was going on with Dad during the first couple weeks in December, the days and the nights blurred together, but we never lost sight of the date circled in red on the calendar: the day for Dad to get Round Three of his treatment. After the debacle in the Chemo Suite during Round Two, I called and spoke to the oncologist about planning for a smoother appointment the next time around. He advised me that the date we were schedule to come in, the Wednesday before Christmas, was one of the busiest Chemo Days of the year and that, if we wanted efficiency, we should get there as soon as their doors opened. Because sleepless nights resulted in energy-sapped mornings for Dad and for us, I knew it would be a challenge to get out of the house and to the appointment that early. I didn’t want a repeat of the noisy, over-crowded Chemo Room or, even worse, the delay in even getting the drip started like last time, though, and so I agreed to the early bird time slot.

I also reminded the oncologist that the protocol from Duke called for an MRI at the one-month mark after the treatment had been started, which meant that Dad needed to get in for the scan right before or after he got Round Three. “How about the day before?” the doctor asked, and I put that on the books as well. The week before Christmas would be very busy for my family, I thought.

On one hand, I dreaded Chemo Day, but on the other hand I looked at it as something we could tick off our list on the road to getting Dad better. I looked at it like a Triple Letter Day on our Scrabble Board, a chance for us to score BIG TIME, and I was almost holding my breath in anticipation of the Big Payoff we had been promised from Avastin the Magic Bullet.

I had been making the three-hour drive between my parents house and mine about twice a week, staying one or two nights each time. As arduous as it was to get there to help with things at my parents’ house, to cover the distance in a state of constant sleep-deprivation, to try to keep up with whatever I could at home, and to carry on with my work responsibilities during this time, it was all I could do; I felt like I was free-falling whenever I wasn’t with Dad, and I felt physically ill when I didn’t know exactly what was going on at my parents’ house. It wasn’t that I thought that I needed to spend as much time as possible with Dad in case his time was limited; really, that thought didn’t enter my head because I was convinced that this difficult time period was just a bridge over troubled waters, an obstacle course through which we had to maneuver in order to get back to Real Life.

The week before Dad was scheduled for Round Three, I spent the night and most of the next day at my parents’ house. I had planned to leave there that evening so that I could get home and go to work the next day. However, when I went outside to put my suitcase in the car, I saw that a solid layer of ice had formed over the few inches of snow already covering the streets. As I defrosted my car, I reasoned that, once I got out of the neighborhood and onto streets with more traffic, the roads would have been salted and cleared by the other vehicles so I would be able to make it to the home safely.

I told Mom and Dad goodbye and slowly drove out of their neighborhood and onto the winding, two-lane road that lead to the interstate. The second street was hilly and shaded, though, and the ice was much worse. Cars in front of me were sliding and skidding, and, as I neared to the top of a big hill, I saw a fireman waving to get my attention. I rolled down my window to see what he wanted, and he told me that they were closing the road behind me because it was considered to be impassable. I eased my car forward, and my tires started spinning, preventing me from continuing up the hill. “Should I turn around and go back down the hill to get back to my parents’ neighborhood?” I asked him through the still-open window. “Can’t advise you,” he said. “Liability.” OK, then.

I did a three-point turn-about and started back down the hill, but my tires lost traction, and so I slowly pulled onto the narrow shoulder of the ditch-lined road. I asked the fireman who was still just standing there watching for help, and he said again that he was not allowed. I had a terrible sense of foreboding, or maybe just a sense of duty, and I was suddenly so desperate to get back to my parents' house. Frightened and panicky, I speed-dialed my husband and tried to explain to him what was happening. “Just put the car in low gear and go ahead slowly,” he said. With my stomach in knots, I clenched the steering wheel with both hands and eased down the hill, and, after taking almost 30 minutes to cover the two miles back to my parents’ house, I breathed a huge sigh of relief as I pulled into their driveway.

I went back inside the house and told them what had happened. “Wow! I’m glad you’re ok!” Dad said.

I felt my fear melt away, and I asked him, “Want to drink a beer with me?”

“I thought you’d never ask!” he said with a big smile.

Chapter Six, Part 7: Friends

2016-05-16T20:45:00.001-05:00

Dad, with Mom and friends on a camping trip several years ago

My dad was always one of those people about whom it could be said didn’t meet a stranger. He honestly considered every person with whom he came into contact to be a potential friend, and he was consistently and genuinely kind in every situation. He once told me that he didn’t see why everyone didn’t make an effort just to say hello to every person with whom they crossed paths. “Even a dog knows it’s better to wag his tail to greet people he passes on the street,” he said.

During the time that Dad was sick, we received many cards, emails, Care Page messages, and phone messages of concern and love, and we appreciated all of them. On the front lines of the war we were fighting, we were frantically trying to keep our heads above water, plugging the holes in the dam for as long as we could, though, and the daily challenges and the shock with which we were have to cope were so overwhelming that it was all we could do to get it together to post on the Care Page every couple of days or so. Returning individual phone calls and emails was just too much, both because our time was spent focusing on Dad and the things that needed to be taken care of as part of taking care of him and also because it was just too much to even consider detailing the tragedy of it all out loud outside of The Bubble of our immediate family. It was just one of the cold hard facts about how it was when Dad was sick; our propensity to reach out was thwarted by the outrageousness of what was happening, but unfortunately the closing of the ranks ended up being something that we later learned had affected how Dad felt about himself and his views about the impact and the quality of his own life.

Not long after the second round of chemo, Mom got a phone call from one of Dad’s best friends from the small town in Missouri where my parents used to live. Dad’s friend said that he was going to come over to visit Dad. Other friends had offered to visit many times since Dad had gotten sick, but up until that point we had declined their offers for several reasons, most notably that we were concerned that contact with others could impact his health both physically and emotionally. We’d been warned by the oncologist about the dangers of germ exposure for a person on chemo. Another concern was that Dad’s problems with memory and reasoning would travel like wildfire through the gossip lines and reach his coworkers and his clients, which would be a source of embarrassment to him. Because of the logistics of caring for him while he was sick, Dad didn’t have a lot of privacy, and we felt strongly that we should do what little we could to protect him.

But this friend wouldn’t take no for an answer. He insisted that he just wanted to check in but assured us that he wouldn’t stay long. We were worried that Dad’s friend would not be able to hide his shock when he saw the changes that were so apparent in Dad. As much as possible, those of us who were around regularly were striving to act as if it was no big deal that Dad had to use a walker to get around the house and that he needed reminders about what day of the week it was or the fact that he wasn’t going back to work the next day.

On the day of the visit, Mom and my sister helped Dad get ready, and he was seated in his chair in the den when his friend arrived. The conversation flowed without too much of a hitch, and, after about 30 minutes, Dad got up to go to the bathroom (of course, without waiting for help). He used his walker to slowly make his way down the hallway, and his friend didn’t miss a beat; he expertly disguised the shock and sadness he must have felt to see such drastic changes in the man with whom he used to share the course of their weekly Saturday morning twenty-mile runs. When Dad resumed his position in his recliner, they visited for a while longer and then his friend said he had to go. Dad was both exuberant and exhausted afterwards; he lied down on his bed to “rest his eyes” with a big smile on his face.

Of all the memories I have from during the time surrounding Dad’s illness and subsequent death, this is one of the ones that is guaranteed to make me sad to the core every time it pops into my head:

Late one night when I was sitting up with Dad several weeks into his illness, he abruptly changed the subject from whatever we were talking about by saying “I don’t even have any friends.”

“Oh Dad, you are wrong,” I said, with tears in my eyes, “and I wish you knew just how wrong.”

With his eyes wide in amazement, he said incredulously, “I am?”

“Yes, Dad,” I told him, “I know you are usually the one who knows best about a lot of issues, but you have to believe me when I tell you that you have more friends and more people who love and respect you than anyone else I know.”

“OK, I hope you’re right, because it’s really important to have friends,” he said, and then he drifted off to sleep.

I’ll never know if he fully believed me or otherwise realized the depth of the truth to what I said that night. In something that I think we could only have seen in hindsight in our situation, I wish so much that we had encouraged any of Dad’s friends who were so inclined to visit while he was sick. Being a true friend was one of the many things at which he excelled, and he needed to know beyond a shadow of a doubt that his friends were rooting for him as he fought, that the many people who cared about him were there for him in the shade as well as in the sunshine, and that those who knew him were changed for the better for having known him.