No Sugar

It's been a wild .... how long has it been?

2025-06-27T20:17:00.000-04:00

I've been so incredibly busy and stressed, I haven't had time to do an update other than a short Facebook post. So here's the news:

Mom and dad were reunited June 20 when she was discharged from Mercy Rehab. It was the first time they'd been in the same room for a month.

I'd say it was a sweet reunion, and I guess it was, to a point; they were able to hold hands. But it was amidst the smells and chaos of a nursing home, under the cloud of her being discharged from daily therapy in a pristine environment, robbed of her motorized power chair (first because INSURANCE, then because they had to "approve its use in the facility" to make sure she didn't mow someone down in it, but meanwhile it was the weekend when that evaluation couldn't happen), so she was stuck in a bed, couldn't physically push a call button, was at the mercy of an under-staffed staff ... shared a room with her husband who has slept in a recliner for decades but was now confined to a hospital bed and so was therefore uncomfortable and snored all night ... not to mention the facility itself was ... lacking cosmetically, to put it kindly.

Now that I had them in the same room, I could contemplate the next steps. It was obvious they weren't going home, but were they to stay there, at a skilled nursing facility? or transfer to a different, hopefully nicer one? does one exist? or was assisted living a possibility?

I put out a request for input from the community: what places aren't terrible?? [what a low bar.] Which should I avoid? What should I look for? I only had experience with one local facility (where my grandmother stayed), and that's in West Virginia and much closer to my parents' home than my own. I knew it was a small, charming place, full of caring, attentive people, and that mom was happy with her mother's care there. So it was a at the top of the list, despite its distance.

On a whim, I reached out to a place I knew of because Audrey's orchestra had done a performance there. Fortunately, just days before, a double-occupancy room appropriate for a married couple became available. I arranged a tour, just so I could examine it with the fresh eyes of a potential resident/family. I'm sure there was a bit of bias because it's so close to me and SO much nicer than the nursing facility, but I felt an immediate peace and hope that it was a place in which my parents could live comfortably.

We could have put down a deposit and taken our time, moving them and their furniture in when we had it all arranged and supplies purchased ... but given our dissatisfaction with their location (and really, when it came down to it, the tipping point was one obnoxious nurse), it seemed the best option was to yank them out and plop them into the new place.

So that's what we did.

I keep saying "we," but ... truthfully ... it was me. Audrey was in Colombia, Ezra was in Belize (she's home now, he returns tonight). The aides, who have been staying with my dad almost 24-7 since mom's accident -- and with both of them since they shared a room -- packed up all their belongings. The new place sent a transport van, and two days after my tour, in the pouring rain, they were moved into their new apartment.

Celebration Villa is a small (60-ish bed) assisted living facility. It's 20 minutes from my house, set back far enough away from commerce that most people don't know it exists, but moments away from virtually any shopping/food we could need. The staff has been wonderful, getting to know my parents gradually and showing great concern in making things work best for all of us. It's only their second full day here; the room is chaotic and not set up the way it will be eventually. But they're here, they're safe, they're cared for, and they're together.

The aides still come to help ... eventually that will subside as everyone gets more comfortable with the new environment. They have been a godsend, training staff everywhere how to best transfer dad, how to know if he's having a good or bad day, making sure mom has her Jolly Ranchers and lip balm :) . She has her powerchair (still fighting with insurance, but what else is new?), and despite much grip and dexterity deficits can drive it with ease, change her positioning to suit her, and even comfortably nap if the mood strikes. Dad has his recliner from home, his neck pillows and blankets, and seems to be enjoying the food here so far :) He got a peanut butter and jelly and cheese sandwich today (blech! lol).

So that's the update. If you would like to send a "housewarming" card, the address is: Celebration Villa, Room 337, 104 Pappan Business Drive, Beaver Falls PA 15010. You can always visit, although I'd give it a few days or so while everyone settles into a routine and knows when visits would work best (we also don't have the room set up for guests yet).

Updates! Things and Stuff!

2025-06-11T09:09:00.000-04:00

I can tell I haven't blogged lately by the "what's going on" texts I get :) Thank you all for reaching out/checking in.

How's mom? Mom is in good spirits, all things considered. She's determined to make the most of therapy and is making progress. The PT/OT people at Mercy are wonderful. She has an adaptive hand device that allows her to feed herself. SHE PAINTED THE OTHER DAY. She still has to wear the Cone of Shame, and hates that very much, but she's able to take it off to eat and bathe. A brief respite. As far as what she's regained ... that's all in question. From what I can gather, she has no torso control/strength, is reliant on the hoyer lift for transfers, and no bowel/bladder independence. But she can drive her motorized chair with her good hand, has been able to make and receive calls on her cell phone, and participates in everything offered in therapy and community events at the hospital. However, she's set to be discharged June 20 ...

How's dad? Dad had an "episode" of extreme extremity swelling and high blood pressure. Retention of fluids is not cause for immediate concern, however the combination with blood pressure led me to have him admitted to be sure there wasn't something else more serious going on. The doctors seem to think that even if his condition "is/is a result of congestive heart failure", the fact that he has no history means that even if the symptoms are indicative of CHF, he's in no imminent danger (people live with/manage CHF for years). It's one of those things (HEART FAILURE!) that sounds more dire than it actually is? I guess? This is a new area for me, so I'm learning and trusting doctors at this point.

After an agonizing trip to the local ER, he was transferred to a different hospital with a much shorter wait time, was admitted and received diuretics and BP monitoring. After sorting out his BP medication (he was basically asleep for 3 days) (it's always a conundrum, because he runs LOW - for him, "normal" BP means he's likely to pass out if he's raised), he's alert, chipper, and back to his normal self. He has been discharged to a skilled nursing facility as of last night, and we'll begin the "settling in" process this week.

How's Ezra? It was a challenging day, Friday, when Ezra's loaner car battery died and the key was stuck in the ignition, I was at The Ranch (my parents' house) and there was no food in the house. But my neighborhood rallied, got him jumped and fed, and in the pouring rain (indoor ceremony), Ezra walked the stage and received his diploma. It was such a blessing to have dad's aides covering him at the hospital so I could celebrate and enjoy my amazing son's big moment.

How's Audrey? LOVING life and living large in Colombia. She sends me pictures I cherish. It's sometimes hard to explain what she's doing there, but here's my attempt: it's a summer work study project. There is a group of them there. Audrey is interviewing residents of Medellin about their perspective on the drug wars / cartels / Escobar era. Amidst her research, she hikes tall mountains, goes on coffee tours, feeds alpacas ... I'm so thankful she's getting this amazing, immersive experience. (I'll be requiring her to make a comprehensive post about it when she returns, lol).

How's Rachel? Ah, that depends on the day. The last month has been ridiculously stressful. Most days I'm in "what's next/planning mode", and some days I completely melt down or sleep the entire day. It's been a lot. I'm blessed with an amazing family - parents who have always loved one another deeply, care about MY wellbeing, and cherish their grandchildren. I'm blessed with caring, considerate, do-anything friends, who have covered me and backed me up and encouraged me and expressed their concern. I'm working (blessed with a mobile, work-from-home job), coordinating care for both parents, gradually cleaning/clearing their home, and trying my best to "be there" for my kiddos (although they do make it easy). There's still quite a bit in front of us in terms of decisions and medical issues, but the fact that everyone is pleasant and helpful eases that burden.

How are we? One day at a time - that's all we can manage. No one, no matter the circumstance, knows what tomorrow holds. All we can do is keep a positive attitude, and as my dad is wont to say, "don't let the turkeys get you down."

What does the non-caregiving part of caregiving look like?

2025-06-04T14:09:00.000-04:00

I get overwhelmed a lot. Sometimes I think I'm being silly. Other times I have documentable evidence of how a day can go in terms of Doing All The Things. This has been one of those days.

It's 130p. This is what I've done so far today, starting at 8:

Work: Paola - caseworker call: coordination of work meeting at 5 today

Eric - Txt: hello!

Tanya - txt: care of cats

Laura - txt: backyard maintenance discussion, checking in

Sandy - txt: planning to visit mom, picking up items

Sandy visit

Kathy visit

Work: Trevor - txt: caseworker coordination of meeting at noon today

Work: Zoom meeting (5 people). Created plan, sent plan to participants

Work: printed/responded to teammate's email

Work: documentation of 12p meeting

Work: responded to caseworker email regarding different case

Work: Kate: caseworker calling to update on family situation, different case

Rick - call: checking in (mom accidentally called him) (was on the phone with mom; sent email reply)

John - email: planning in-person meeting this month. emailed updating on current status of things.

Mom - call: discuss therapy, care, future plans, etc. working with tech to make it easier for her to call / answer her cell phone directly

Nurse - call: attempting to talk to mom

Nurse - call: returning call

Lisa: home health boss, asking about July's schedule. Future plans? Is she coming home? is he going somewhere? [I HAVE NO IDEA]

Ezra - talk, txt: going to dentist, need a check, plans for today and tomorrow

Ezra: at the dentist. plans there changed. Payment arrangements.

Newish aide - talk, advise on meds, food, supplies

Norma: txt: how are you? (in hospital)

Abby - pastoral care call and txt

Amy - txt: do I need more boxes?

phone tree - call: trying to get a refill for dad's medication (his neurologist left, practice closed and the pharmacy closed and his script is running out)

UPMC person - call to figure out above

UMPC person 2 - left message to hopefully get something done in THREE DAYS? and to check back with (new) pharmacy to get a refill/new script? Will need to follow up on that

Dad: random questions about things I don't even have time to brain and sometimes the questions themselves don't make sense but he's trying to make conversation so I try to be patient

I have a rash.

I haven't eaten yet. I'm still in my jammies.

It's really humid. I need a shower.

I haven't been home in 5 days.

Graduation is Friday. It may rain.

That is all.

(also, that's not all - both my parents' cars are in shops for repairs ($$), Ezra is driving a loaner car around in the meantime. The contractor will be back Friday to finish up some things around here that need to be repaired (we need 2 new fan/lights in the bedroom, new switches around the house), and there's always something else to add to that list (the kitchen drains are acting up), as well as some things at my own home that need to be addressed. I still need to get back to the ortho (appointment had to be rescheduled) to confirm that I don't need to be wearing the boot for my broken ankle. I should do PT for my ankle. That's not going to happen any time soon. Still stiff, still hurts. Yesterday the cable was out, and it took many phone calls (AI and phone trees, yay) and time and such to figure out that it's just that a breaker was off from when the contractor was here working on some electrical things). Mom wants me to call dad's doctor to have him authorize PT and OT come in again to be sure he doesn't "lose" what he has in terms of mobility and such. I've never gotten the chance to clean up my porch following my house being repointed, so the furniture is still covered in red dust. I haven't spoken to a case manager at the hospital to find out what they're thinking in terms of rehab continuing past June 20th, if that would be there or elsewhere, etc. The house here is still filled to the brim with Stuff and Things. I haven't gotten the mail here in a week, so I need to check that to see if there are any bills/whatever that needs to be taken care of. Same for my house, obviously. No idea what mail awaits me there. Mom wants toothpaste tube squeezy caps and a roller thing for the tube. Dad had trouble eating his cake-and-cream whatever cup of dessert. He's out of olive-and-cream cheese spread.

That's not all, but it's all I'm bothering to type out right now. I think I'll have some cheeseballs.

How’s Your Mom? How’s Your Dad?

2025-06-01T19:01:00.001-04:00

Just checking in, really.

Things are pretty much status quo at the moment.

On the home front, I continue to clean and clear things, little bits at a time. I don’t mind it, really … there’s just SO MUCH. Bank statements from 2010. Things tucked and stashed and stored in every available space. It’s just a lot. Not much cleaning I’m doing is urgent, but it needs to be done eventually, and right now I’m just chipping away at things with an eye on making more usable space.

Dad: same-same. He spends his entire day in his recliner. To be honest, he doesn’t really mind that (as far as I can tell). If the weather would cooperate, we’d go out and sit on the back deck … but he leans toward cold always, so that can be unpleasant and not worth the effort. A warmer June would be awesome.

His aides are freaking amazing. Going from 2x day 9-1 and 5-9 to 24-hour coverage has meant shuffling around for the boss, extra shifts for the helpers, and trying to coordinate his care to fill in for what mom was responsible for during the times no one else was here. They keep good notes, they all have great attitudes, and they’ve come to know my parents personally, which I appreciate very much. It’s something that comes over time, and while it’s possible to have at a “facility,” this is a different relationship. It’s special. And that’s not lost on me.

Mom: tired. Therapy daily (one day off a week). She’s able to do some surprising things - move her legs and feet (she can’t feel it but she can brain and do it), pull toward herself with her arms (cannot push well/at all), drive her motorized chair with her “good” hand (which doesn’t grasp, but does obey commands). The big one - as people know in dealing with quality of life, is “bowel and bladder”. These are not independently handled. So … that’s a thing.

One of the therapists called last week and said her Discharge Date (dun dun DUN) is slated for June 20. Obviously that’s subject to change, depending on her progress, but perhaps they don’t foresee any more progress after that point? Maybe it’s a hard line for insurance? Anyway … The therapist pointed out that at her current level, she will need 24-hr care.

So.

There it is.

Will she improve between now and the 20th? Likely to some degree, albeit a mystery.

Will she be discharged to a quality facility who will work with her and she will continue to make strides? Possibly? Perhaps? Hopefully?

Will she ever return home?

No one knows.

If you’re reading this and have gone through similar situations (as SO many have), you know that this means Big Decisions Time.

Is it time for both of them to go somewhere? If she’s able to return home, that doesn’t mean she can go back to things the way they were before … meaning she’s not backup for the caregivers. Does she come home and HE leaves?

Thankfully, finances aren’t particularly a deciding factor.

Then again, that might make things easier.

How are we? In a pickle, really. And so it goes.

Hope is a Beautiful Thing

2025-05-27T11:17:00.002-04:00

Yesterday’s visit went very well.

I had every reason to dread it. It makes sense.

But I shouldn’t have.

Mom is in good spirits. She is able to maneuver a motorized chair with her semi-good hand. She can’t feed herself, but the staff there is marvelous (of course) and are taking excellent care of her.

She was very thankful for the lotion, jolly ranchers and chapstick … staples of her daily life! Some comfort from home. Also a stuffed sheep and some blankets and a YipYip I scored from a local artisan.

She’s uncomfortable/has some pain; her left arm hurts (we think she may have fallen on it), she has to wear the Cone of Shame (they take it off for meals - bonus!).

Her mind is as sharp as ever. She was all about telling me where the backup supplies are in the house, and reminding me about what items were in the fridge downstairs that should be used up. 🙂

Mose important: she has a great attitude about rehab. She said repeatedly that she is willing to do whatever they tell her to do. A fellow patient, who also fell, arrived at Mercy immobile. He’s now walking. It was a poignant retelling. He said, “I don’t know what your faith is - I’m a Catholic and my wife is Presbyterian.” Mom said, “I’m Presbyterian.” He said, “well trust in God and these folks.”

She has a lovely view of the South Side, the river, the trains.

We (of course) still don’t know what the future holds, but I was so encouraged by the visit. I’m glad I went.

Control, Distraction, and Guilt

2025-05-25T23:01:00.000-04:00

I am the coordinator of chaos.

I am the doer, updater, list maker, cleaner, problem-solver, thinker.

It affords me the opportunity to avoid the most painful role: daughter.

The truth is, I’ve been very busy, attending to things at my parents’ home, making sure my dad is cared for and spending most of my time here decluttering, organizing, cleaning, updating everyone on mom’s condition and dad’s needs. I’ve sorted most of the papers (bills! receipts! recipes! pay stubs! greeting cards! 2010 church committee meeting minutes! owner’s manuals! planners! medical documents! tax records! Oh my!), removed 10+ boxes of books for the library sale, decluttered cabinets and drawers, ordered supplies for dad and the home, stocked the kitchen, cleaned up the laundry room, the bathroom, the dining room, my bedroom … producing countless donation boxes and bags of trash. I’ve hired a contractor to make repairs around the house.

I’ve been to see mom once.

I have excuses aplenty - there is so much to be done here; I want to clear the space for both of them, and the caregivers - if mom is returning, she needs to have more access to things than the clutter allows. Pathways need to be more clear for the caregivers to see after dad. If neither of them can stay here for medical reasons, all of this will need to be done anyway.

And yet: I haven’t sat down to chat with my dad.

I haven’t been in to see mom since before Audrey left for Colombia and she went along.

The truth is, I dread it.

I could blame PTSD with hospitals and vigils therein. I’ve done all this - camping out in a hospital room / waiting room, doing what I can to make the patient comfortable, watching as therapy does its excruciatingly slow work. I could point out that in addition to caring for both parents, I have a son graduating in 2 weeks, and his needs to consider. I could blame my job for keeping me busy during business hours.

Ah, but the truth is: I dread it.

I dread seeing my mother in her current state. I’m avoiding the conversations and sadness about how things are at the moment. How we have no idea what she’ll regain, and how her life will look going forward. How I’m so incredibly sad about all of it. How we balance hope with reality. She’s not a complainer. But I KNOW how hard this is going to be, and none of us can predict the outcome.

I dread it.

Here, I can busy myself with things that “need” to be done. I can preoccupy myself with administrative duties and zone out with YouTube.

And feel guilty all the while.

I love my parents so very much. It’s so incredibly hard to see them both in their current situations. Every time I have a happy thought about the past and their healthy selves, I shudder and bring myself back to the present.

Because it hurts.

And I’m tired.

Tomorrow I’ve resolved to go see mom. I don’t want to.

The way things are …

2025-05-19T11:40:00.001-04:00

It’s been quite a few days since that dismal update. My apologies.

How are things?

I came to dad’s to stay the weekend. He had been having “off” days - lack of interest in eating, Just generally being “down”. The caregivers were concerned.

Over the weekend, his spirits were improved, he has been eating and transferring well, and all goes relatively smoothly on that front. A blessing.

Eric and I spent the day Saturday doing some cleaning. When I say cleaning, I really mean decluttering. I’m trying to clear things out so there is more space and things are more easily done on all fronts. So it was all day going through baskets and bins of things … tedious, but in the long run will help a great deal. Anyway, it took all day to get the dining room mostly cleared out.

Unfortunately, Saturday night I came down with the flu.

Sunday I spent feverish and holed up in a bedroom, terrified of spreading cooties. Two of the caregivers already have/had this. Obviously spreading of it would cause a helper shortage, and God forbid DAD gets it. And so I hide.

Today I am feeling much better - still a fever, but I’m hopeful to be out of bed today and move toward “normalcy”.

How is mom?

In short, she’s about the same, in most respects. She’s still in the ICU while they stabilize her BP, but they feel they are getting closer to having that controlled and sending her to a “regular” room.

I spoke with her this morning. She still has pain all over - neck, arms, shoulders, back. Then again, that’s sensation, right? So that’s a bummer but not a bad thing and not unexpected.

The buried lead: SHE FELT THE PRESSURE OF THEM TOUCHING HER FOOT. She’s been able to make her legs move, albeit slightly. But having sensation is NEW and I find it encouraging, even if it doesn’t mean regaining use. Her upper body is weak and pained, and remembering she is still in a neck brace, she is very limited. She cannot grasp with her hands, although she can move her arms.

So that’s about where we are. The next few weeks will see her moved to a new room and possibly then transferred to rehab. It will see Ezra graduate high school! and take a trip to Belize. Audrey returning from Colombia. It will have me hopping locations from Hookstown to Beaver to Pittsburgh. It will mean being an emotional support to … well, all the people.

There are so many bright spots and blessings throughout this hardship.

The aides who come to dad’s place, caring for him so well and maintaining the home as best they can by “winging it” to cover what mom always took care of.

The ICU nursing staff, who are taking good care of mom. She has no complaints.

My boyfriend, who has bravely entered into Support Staff role for his “new-ish” “adopted” family.

My son, who is the most empathetic, steadfast, helpful, mature young man. He’s made countless trips and done so much work here for them and for me … we could NOT have done this without him.

Lastly - all of you. Asking how you can help, checking in, helping me cover things and take care of tasks to get a little off my mother-of-all plates. If you’ve messaged and I haven’t responded, know that I have seen it and appreciate it and when I get the chance hope to personally respond to everyone.

What can you do at the moment?

Pray for mom’s recovery, however that looks.

Visit them both; mom is fine with visitors, and when she’s moved to a regular room she’ll have her phone and will be happy to take calls. I won’t be able to see her daily, even when she’s moved to rehab, given dad’s situation and having my own home and things to attend to … so any contact from people she knows will be very much appreciated by both of us.

Every now and then I may put a call out for help with something … I guess just stay tuned. I don’t know what the future holds (isn’t that an understatement?!) but having gone through “things” before, I know that “stuff” comes up. That’s about all I can predict.

Much love to you all.

No, Really. No Sugar

2025-05-15T20:36:00.005-04:00

That's the name of this blog, right? and for a good reason, right?

I'm sitting here, Thursday night, a few glasses of wine into the evening.

Yep, you read that right - the very demon that has a hand in all this mess is prompting me to write: unabashed, unvarnished truth:

This sucks. All of it sucks.

Dad has Parkinson's. It causes all kinds of problems. Those problems have plagued my parents for years. Sometimes he's fine. Sometimes, he's terrible. The day-to-day never changes, and yet the edge remains: will he pass out and need the smelling salts, smacking, cold washcloths, more meds, time ... to get him up off the bedpan and into his "brief" and into the recliner where he spends his life?

Will the aide be able to manipulate him into the wheelchair/recliner without incident? or will his body betray him and cause chaos?

Will he be cogent, when awake, and speak freely and friendly-ly about all things past and present? or will he think there's a chapel at the end of the house, an iron-wrought train track into the fairgrounds with a projection of our living room, or an extra apartment beside the house, where other people live? Will he obsess about the donuts that are downstairs that he retrieved on his way from work (he hasn't left the house in 5 years), or will he talk to whomever listens about photography, work experiences, college life, etc.? Will she be aloof, trying to just "be" in her current circumstance, or will she be angry, frustrated and resentful? Will the Food Network distract and ease her inner pain, or will it amplify the tediousness that is her life? Will she text her daughter with the truth about how she's feeling, or will she Sheraw it up and say things are "fine"?

I haven't been to the hospital in a few days. I haven't been to the house since "The Incident". I've been doing things here, sure, and seeing my daughter off on a grand adventure, but should I have been in those other places instead? I spent quite a few weeks away from my kids while their dad withered in the hospital ... they're older now, with more understanding ... what is my role, as the only child of ailing parents and the only parent to two young adults?

He's sad, he's depressed, he blames himself. For her injury? for her despair? for his own illness? All understandable.

I don't want to face the inevitable. The thing I've been saying for years: if something happens to her (as it does, often, with caregivers), I'll be in an impossible position of caring for them both, in different arenas.

And yet here we are. The foreseen has come to pass.

Today Ian's mom (whom I will always refer to as my mother-in-law, btw) and her husband spent the afternoon with him where a shift of aide workers could not be filled. He's not been eating today -- depressed? frustrated with his shakiness when attempting to eat? who knows -- but they have been a positive influence to his day. Yet upon the daily attending to his biological needs, my son was needed to hoist him from his chair.

It's becoming untenable.

I know this.

When do I send him away to a "senior storage facility" (his words)? How long do I allow him to stay in the home he built, with my mother, while waiting for her (possible) return? What do the next months hold? How do I encourage her rehabilitation and improvement while dealing with his decline and immobility?

I have no answers. It's all questions. It's all jumbled. It's all so hard. And that is all I have.

Monday Morning Update

2025-05-12T11:10:00.003-04:00

It's been a busy weekend of coordinating.

Dad's 24-hour coverage at home has been organized, with only a few gaps.

I have a good understanding, I believe, of all bills and such.

I'm working on getting in touch with doctors, etc.

The buried lead: Mom's okay.

Define okay? I got to see her. She was miles better in appearance and spirits than when I left her in the ER early Saturday morning. Her pain is being managed. The ICU staff is excellent and careful and attending to her every need.

She was able to FaceTime with dad.

What else? The burning questions - what are her physical limitations? what might she regain? How does the future look?

I know better than to allow us to get ahead of ourselves, so here's what we DO know, at this very moment:

Her breathing tube was removed and she's breathing fine on her own. She does have some added oxygen (nose tubes, yay!), but all of that is stable. She is not sedated.

They are keeping her blood pressure HIGH, to increase blood flow to the spine, so that's being carefully monitored in the ICU.

On Sunday morning, the PT crew came in, and according to mom, she was able to either push or kick against their hands with her leg. I was shocked to hear this. She said she can't FEEL her legs, but she was able to move one? Astounding.

While I was there to visit, her legs moved, unbeknownst to her. I brought it to her attention, and asked her to move one of them on purpose - and there WAS movement.

She's able to move her arms freely. Her hands are very swollen, from just general nerves/injury and/or medications/fluids onboard. It is unclear her ability to grasp or feel with her hands at this point, but I didn't press to determine any of that, given their current state.

Yesterday her brother, Audrey and I were able to visit with her. She is 100% cogent. She is even gaining a bit of memory of what happened Saturday morning ... bits anyway. She remembers standing and tripping over the blanket that was in her lap when it fell to the floor. I have yet to be at the house to recreate the scene in my mind, but a picture is becoming clearer. Not that it matters, much.

Yesterday Ian's mother, Carol, came over anyway, and we ate the food I had ordered and admired the flowers. Then she and Ezra went over to be with my dad while Audrey and I went to the city. It was a blessing to have the company, and I was finally able to eat something.

Today: there is more coordination to be done. More boxes to check, things to confirm, things to schedule. Ezra took the day off of school to "hold down the Ranch" (their home) while I work to coordinate more things from home. Mom has visitors scheduled for today, for which I'm sure she will be grateful. The nurse said they would be putting her in The Chair later today - it's a stretcher chair, and I am very familiar with it. I have a horrible photo of Ian in that same chair, but it's necessary for blood flow and healing for patients to be upright for some time during the day. It will be good for her, even though it may cause additional pain/discomfort.

She's not eating yet - she will have to be "checked off" to do that by the Speech/OT folks and the doctor. But she's not hungry, either, so she's not stressing the not eating thing.

I would say her spirits are average; she's not wallowing, but she's not cheerful. She did have good conversation with all of us, covering non-serious topics of the past, present and future. I will say that at some point in the conversation, she noted that she was wearing The Cone of Shame 😆.

She is able to receive guests. She is not sedated, but she is on some pain medication. The nurse said they like to keep patients awake for most of the day when possible, so if anyone wants to visit, please let me know and I will be sure you have the information needed.

How am I? I've had my pity party, my bouts of sadness, and now I'm in caregiver mode. It was very good to see her yesterday and to have a better picture of her in my mind than I had in the ER. I am very, very busy, coordinating and such, and that's probably a good thing. We have no idea what the future holds, but we do know some of the decisions that will need to be made, and none of them are pleasant.

If you've made it this far, here's your reward: a mother's day selfie:

I don't think her nose is broken;
the mark is from her glasses.

Blogging Again: An Unhappy Mother’s Day

2025-05-11T10:07:00.010-04:00

A: You should blog again

Me: Well, there’s been quite a gap, since your dad died. It was kind of about that for a long time.

A: Yes, but your writing is good

Me: ….

——————

Mother’s Day, 2025

Today was going to be a special brunch for the special moms in my life: my mother and Ian’s mother. We were going to spend the day snacking and chatting. I had food and flowers and sweets and heartfelt notes and a playlist.

Friday night, I got a call from my dad, saying they needed an ambulance.

I called and sent them out, not knowing what was happening … but hearing my mother groaning in the background.

He called again to say she was having trouble breathing. I called 911 again to update them.

I called my mother’s neighbor to have her run over. I’m 30 minutes away.

I need to back up to add: my dad has Parkinson’s. He had many years of mainly altered gait and difficulty rising, requiring some help from mom in doing so. For the most part, he could transfer himself to a wheelchair and/or motorized chair and attend to his basic functions.

Then one day he fell and broke his hip.

Then came surgery, recovery and rehab. There was little pain, but a marked decline in mobility. Now with loss of strength, it was very difficult for him to rise and transfer, and of course the fear of another fall. So my parents employed a team of aids to come in twice a day to help with hygiene and light housekeeping.

This has been the case for several years. Unfortunately, aside from Parkinson’s, my dad suffers from orthostatic hypotension and vagus nerve response. Translation: he passes out upon rising. Because his legs already don’t want to cooperate, this can lead to a flurry of chaos and danger. His blood pressure is closely monitored prior to rising, but it’s not always a good predictor of the day to come. Sometimes when transferring to his electrical recliner at the end of the day, his functions fail him and this presents great difficulty for the aid and my mother. Sometimes this requires a call to the fire deparment for a lift assist. Sometimes it leads to him slumping to the floor, making that whole process much more difficult and stressful.

In short: my dad doesn’t get up on his own. My mom is, and has been, 100% responsible for monitoring and feeding him and coordinating the help coming in twice a day to assist.

It’s been a long few years for her. She has been living “Groundhog Day,” trapped and resentful of the life that has forced itself upon her. Her deep love of my dad and sense of responsibility are coupled with sadness, overwhelm and depression.

It’s not unexpected nor unreasonable that she resort to self-medicating the deep sadness and anxiety that plagues her.

Returning to Friday night: at some point, the wine consumption had tipped the scales to excess. Earlier that evening had been the call to 911 to lift a puddle of my dad from the floor after a bad transfer. Whether the wine had flowed mightily preceding the incident, or as a result, we can’t be sure.

What we do know (and even that is muddled, given my father’s having been asleep and sometimes muddled mental state) is that at some point, mom fell. She became tangled in cords and chargers and met the floor in a violent way.

The call from my dad was after repeated attempts to have Siri or Alexa call 911 to no avail; and thank God he was able to connect with me.

Living very close to the medical center, I sat tight while my neighbor narrated the scene. The EMTs had arrived, and with significant difficulty had loaded her and were on their way. This left a very agitated and worried dad at home, alone, and so my neighbor graciously stayed the night.

When I got to the hospital, my mother was moaning, in agony. Her arms flopped up. She had a hard time catching her breath. She was panicked, bloody (nose seemingly broken), and … politely … altered. Her blood alcohol content was high.

I did what I could to ease and relax her. There was nothing to be done; they couldn’t administer pain medication, they had to do testing, and things were dire. They put her in a neck brace. This created more pain and anxiety. Her back, which on a good day causes her continued pain, was on fire as she was laid flat, something she cannot do normally.

And she couldn’t feel her legs.

Upon closer examination, she couldn’t feel her stomach, either. All the way to the breastbone she was without any feeling.

I could see the concern in the doctor’s eyes. (Side note: I’ve dealt with MANY doctors. This young man is exceptional, both in diagnosis and bedside manner). The lack of any sensation meant certain spinal cord injury.

The decision was made to fly her to The Big City’s trauma center. And so to the chopper she went.

The news is this: she has a fracture of the C5 and C6 vertebrae (neck). Hyperextension (whiplash) as a result of the fall (not likely to any impact) has produced swelling in an already narrow (congenital and degenerative) spinal column.

The result: my mother will not walk again.

She’s spent years going from bed to computer chair, tending to my father’s needs and doing nothing for herself. Leaving the house has been limited to times the aids were there and she could run to get groceries. Albeit a chore for many people, my mom enjoys cooking, and can make magical meals from the most basic things.

And now she lies in a hospital, intubated and sedated, following a surgery to decompress and stabilize her spine. Upon waking, she will re-learn that despite a successful surgery, she will even less be able to fully participate in life. Do anything for herself. Experience freedom and joy.

My heart breaks for my mother.

My heart hurts for myself. I despair the months to come - hospital visits, care coordination for both parents, overseeing a second household of bills, upkeep and utilities. And the larger decisions that will need to be made in the future loom and itch and form a messy cloud of angst.

This was supposed to be a lovely Sunday Mother’s Day brunch.

Three Years?

2019-09-04T10:44:00.000-04:00

Has it been three years already?

Has it only been three years?

I’ve been saying “three years” in my head, at least, for the past year … that’s probably because my brain was including the time of the re-diagnosis and decline in that grief/trauma math.

So many people have said that I should write a book about all this.

First, I kinda have, right? The blog served as a way to process and inform, to raise awareness and reach out… to sort it all out somehow.

But what about a how-to? A guide on grief?

Allow me to point you to the long list of such books available on Amazon. It’s akin to the number of books on parenting toddlers or finally getting your home organized. And there’s a big reason for that: Every person is different. Every grief is different. Every story is different. Every family dynamic is different. I can provide our own, personal narrative, and I can perhaps offer some words of advice to those going through a similar experience (husband dying of brain cancer, with two kiddos roughly mine’s ages), and I can provide general “get- your -$h!t- together before it hits the fan” advice, and general “don’t say this” stuff (see upcoming posts). But other than that? I can only tell you my story. Our story. How we did/do this “grief” thing.

I’m in several groups (most of them virtual) about losing a spouse, young widowhood, parenting as a widow. Some stories ring true and familiar; others seem foreign and strange. Here are some pieces of our process:

1. Dead dad jokes
2. Cussing out the dearly departed.
3. All of the drinking. Seriously. I made up for lost time in these past few years. Also vaping. Because why not be as self-destructive as possible?
4. Absent. Foggy. Depressed. Weight gain.
5. Trying to jump back into things too quickly (work)
6. One child’s faith shaken, the other drawn to asking probing questions
7. Church attendance faltering and ceasing = guilt
8. Over-indulgence ("you owe it to yourself!")
9. Rage at little inconveniences and inefficiencies
10. Pain at seeing happy couples online and in person.
11. Resentment at having to do it all on my own. Figuring out only-parenting in the digital age.

Anyway: it's been three years. For those of us on a grief journey, it seems Year Four can mark a turning point. An awakening, a move forward, a slight lift in the crushing weight of it all. I have found this to be the case in my own life; the fog has lifted, albeit ever so slightly. I'm able to see past this minute and this day, even to next week and beyond. Some changes are coming, some things are beginning, and the dread is at bay.

Now just get me through this raising teenagers thing, okay?

How We Are

2019-02-27T11:11:00.001-05:00

Tomorrow is the big day.

I’m spending today finishing up laundry and doing surgery prep ... which means I had to drink the nasty stuff and I’ll be staying close to the can all day. ‘Nuff said.

So how are we?

I’m over it. I’m ready for this to be done with. I’ve done my worrying, my planning, my preparing, my normaling. I’d now like to be recovering and done-ing.

It’s the kids. Seriously.

Ezra asks every day if there’s any new information. He’s thoughtful and ruminates about how cancer is terrible and wants to know that once this is done all the cancer cells will be out of my body. He’s

trying to wrap his head around all of it by planning every minute down to the smallest detail. CONTROL. And snuggles; he’s wrapped in a blanket and hugging me every chance he gets.

Audrey is a bigger fish. She is an energetic, amazing teenager. She’s into lots of things, is a lot of fun, and is just OUT THERE in terms of her personality and fire. But inside ... guys, she’s really imploding. She’s SOOOO worried about me. I can’t explain how much she doesn’t give off that vibe, but it’s eating her alive. I’m so ready for this to be over, for HER sake.

As for me, I’m plodding along. I dislike that I’m not sure what to expect in terms of recovery time, but I have to just breathe and believe that it will all be fine and even though I don’t know HOW it’s going to be, it will just BE, and we’ll get through it.

Also- there’s the hoping there are no complications and that this can be a one-and-done situation, vis a vis the C word.

Meals have been planned, rides are standing by, the house is mostly cleaned up and laundry taken care of ... so now ... we wait.

2019-02-11T20:06:00.001-05:00

The stent is out! Yay!

(Really, there is no adequate way to express my relief here.)

Surgery has been scheduled: February 28. Probably very early in the morning, although it's unclear when "very" is.

Recovery time averages a day or two in the hospital, followed by a few weeks of "taking it easy," however that looks. (Thankful to not have toddlers!)

Since we're not doing the biopsy till after the surgery, I won't have pathology to report until a few days after removal. That will give a better picture of what follow-up will look like, but at minimum it will include regular monitoring of the Well-Behaved Kidney and His Surrounding Cohorts.

Adding new medical terms to my vocabulary by the day: nephrology. It's fun to say.

Oh, and here's a selfie of the bastard:

Thank you so much for your support through this. As always, my main concern is for the kiddos. So far, so good on that front; they know what's up - this will mark the end of a chapter, but the book is still open. Nothing's guaranteed in this life, and that uncertainty is difficult for anyone to accept, let alone a young person. Please keep them in your prayers.

Is It Really Any Question?

2019-02-06T22:43:00.001-05:00

I guess it’s a big decision, and I don’t want to be flippant about it ... but I keep coming back to this:

"If a kidney lesion is a solid mass, particularly one that picks up blood and thus 'enhances' on contrast CT, it is considered malignant until proven otherwise. In the era of CT scan however, masses are found at a much smaller size than ever before. [...]

Most patients will wonder why a biopsy is not routinely performed to differentiate between benign and malignant renal masses, and this is currently a controversial area in urology. The classic thinking has been that nearly 90% of all enhancing renal masses are malignant. If a percutaneous biopsy is performed showing malignancy, it actually has not helped the management of a mass in that, as a default, surgery was to be performed anyway. If the biopsy is indeterminate, as it often is due to lack of providing a large amount of tissue for review to the pathologist, one must still act on the assumption that cancer is present. If the tissue is read as benign, unfortunately this test has only an approximate 85% sensitivity, and thus cancer could have been missed. In all situations, a biopsy is a separate procedure with risks such as tumor spillage, bowel injury, hemorrhage and needle site seeding with cancer. Some centers feel that a biopsy can help grade cancer as high or low grade, thus making it easy to offer some patients with renal masses conservative management, but this has not become the standard. Thus, the decision to proceed with treatment is typically based on statistical likelihood and not an actual biopsy."

~https://www.dcurology.net/common-problems/kidney-masses.php

And so, unless any different evidence presents itself, I shall say goodbye to a kidney and hello to a hopefully speedy recovery wherein I can avoid hearing the C word for at least ... could I have like 5 years? That'd be awesome.

NOTE: I am currently miserable. I have a stent in place from the previous scope procedure. It is a tube running from my kidney to bladder, which causes me to feel a CONSTANT need to void, and all the pangs and twinges and aching which accompany that feeling. I keep hydrated as instructed, which presents its own problems--I'll let you deduce.

My current best friend.

The stent comes out Monday. I'm literally counting the hours. I hope, at that time, to have a better idea of surgery date. Thank you, everyone, for the cards, posts, and fantastic anonymous gifts ... you make me laugh and I appreciate it so very much.

The kids are okay. Ezra is stoic, for him, but also a bit more huggy. Audrey is attentive and a bit more considerate, which is nice :) They seem to have gotten past the extreme fear of the sky falling, and God bless them for being self-sufficient while I hobble around in angry pain.

Only 106 hours to go.

The Good News and the Annoying News

2019-02-02T14:55:00.000-05:00

Thursday I had a ureteroscopy to determine if my kidney tumor was of the connective tissue type, or the “meat of the kidney” type.

It has been determined NOT to be the former.

Oh, so it’s the latter then!

Well, not necessarily.

There is STILL a chance that my tumor is benign, and even something I was born with which has been slowly growing my entire life.

So this [barely new] information prompts us to:

do a biopsy of the thing, hoping it’s the benign kind, and therefore can be zapped in place to shrink, OR
take the whole kidney out, treating it as a cancerous tumor, because if it IS cancer, poking it with the biopsy needle could spread the cancer.

It’s quite possible that removing the whole kidney and a post-op biopsy will reveal the thing is benign and I could have carried on with both my kidneys. It’s also possible taking it out will mean “whew, we’re so glad we caught that thing when we did.”

How am I doing? My brain and urethra are on fire, since you asked. 😜 I have a stent in place that will remain for a bit. Its presence tells my brain I need to pee. All. Day. And. Night. Except I don’t, and even when I do, it’s a painful experience. So. I’m a tad miserable, but that’s temporary (I keep reminding myself).

The bigger issue, of course, is the big decision. I’ve been second-guessing, but I’m still leaning toward taking the whole thing out. Why literally poke the cancer bear? I’ve been told lots of people do just fine in life with one kidney. Dr. K. says my “good” one looks healthy.

And in other news - you guys are awesome. Truly. I woke up from my procedure to an avalanche of well-wishes and wtf-ers (I love and appreciate both). The virtual hug I get from facebook (especially when I can’t really go out and about) is heartening and priceless. Cheers to you, friends.

Seriously?

2019-01-31T12:00:00.000-05:00

I will soon Konmari my left kidney. It has ceased to bring me joy.

In December, I had a raging case of sciatica. I reached out to a neurosurgeon because my leg and foot were going numb and tingly, and I know what that means (fun fact: I had back surgery at age 18. I looked up my surgeon and --sure enough-- he’s still in town, so I went back to him.). Dr. R sent me to physical therapy and pain management, hoping to head off surgery by encouraging my L5/S1 disc to go to its room and think about what it has done.

I’m intentionally burying the lead here.

Also visible on the MRI of my spine was a suspicious shadow. In the kidney area.

I was referred to a urologist. It took a month to be seen. In that month, I went down every possible google trail possible. I came up with everything from “harmless cyst that will go away on its own” to “metastases of cancer of the internal organs.”

Finally, on January 21, Dr. K gave me the news: Renal mass of the kidney. Approximately 4mm in size.

I’d read about this possibility. And I know about biopsies and cancer. With the kidneys, there is little utility in doing a biopsy, because

Poking a tumor can cause it to spread,
False negatives are a very real possibility,
Cancer confirmation would indicate removal anyway.

In some cases, a kidney tumor can be removed, and the healthy kidney tissue allowed to remain. However, based on my tumor's size and location, this is not an option.

And so, probably as you are reading this, I am undergoing a scope procedure which will indicate to the surgeon of which of two cell types the mass consists:

Transitional cell cancer (TCC) is a rare type of kidney cancer. It starts in cells called transitional cells. They make up the lining of the renal pelvis, ureters, bladder and urethra. [this will mean the surgeon must remove the kidney and some surrounding tissue/organs].
Renal cell carcinoma (RCC) is a kidney cancer that originates in the lining of the the very small tubes in the kidney that transport urine. RCC is the most common type of kidney cancer in adults, responsible for approximately 90–95% of cases. [this surgery involves removing only the kidney and can be laparoscopic].

Armed with the results of that scope (I’ll let you go ahead and do the math on how the CAMERA gets to the KIDNEY), we’ll have our course of action and hopefully a surgery date.

The good news: When kidney cancer is discovered, it’s usually from pain and blood in the urine. By that point, depending on the type, it’s likely to have spread and to cause complications which are exacerbated by the patient’s age (usually around 60). I’m an outlier; my tumor was found early, I'm "young," it has caused no symptoms, and it is defined and contained.

The bad news: It’s the Big C, back in our home. My kids must deal with this nonsense all over again.

~*~*~*~*~*~*~*~

As you know, I process things by writing, and so I will be back here in the near future. A few parting thoughts for today:

Up to this point, many of you have been kept in the dark. It is of the upmost importance to me that I protect my children from panic and dread, and until I had more information, it was pointless to get into “what-ifs” and “how are yous” with anyone outside our triad. The kids need to see that Mom is fine; this is DIFFERENT than before. Over the past few weeks we’ve processed the situation as a family, working through the shock and sorrow and fear and anger with no outside influence. We’ve been honest with one another, and I think we’re all in the best possible mental place we can be.
There are a lot of questions about the future: the immediate -- recovery time, possible complications, etc., and the long term -- potential for recurrence, metastases, risk of other cancers, etc.. As we receive these answers, I will pass them along. No news is just that: no news.

"Take Rachel to her MRI and then out for dessert."
I love these ladies.

I’m clueless as to what help I/we may need. I got pretty good at shining the bat signal when my hero needed assistance, but I’m not sure how this is going to look. What I CAN tell you is that I covet and appreciate your prayers, kind words, funny messages/posts, and concern for and care of my children.

Writing About Not Writing, and the Intimate Moments of Death

2018-01-01T15:47:00.001-05:00

I’m writing about not writing because when you can’t write, you just start. And then more follows.

I’m writing about the end.

So many times I’ve started posts in writing or in my head, but my own nature has disallowed me from finishing or publishing because of a sense of incompleteness. I want things to be tidy. A timeline. I don’t want to talk about something that happened at the funeral and then something that happened in the hospital. But I realize, now more than ever, that things things should... must come out, and it’s not necessary that I tidy them up for you or me.

We went to the hospital, to be admitted to hospice care.

I’d like to say that it was a measured decision: he’ll die soon, and so we need to have round-the-clock care when that happens, to make him comfortable and do what needs to be done. It wasn’t that. I had reached my limit with observing and diagnosing and handling Ian’s decline on my own. In a very short time Ian had gone from eating and saying confused words for me to interpret into meaning to lying askew, constantly listing, eyebrows not raising and lowering with thoughts or understanding, no natural inclination to opening his mouth to spoons of applesauce, and generally not taking in the things going on around him.

He started to make the breathing/choking noise, which in its very early stage was hard to distinguish between “he needs to cough” with what I have of course come to know was the oft-used term “death rattle.” I wanted him to cough. I wanted him to help me help him sit up. I wanted him to focus his one good eye at me as I talked or attended to him ... but these things ceased to be.

So in desperation and exasperation, I called the hospice team. They sent an ambulance immediately.

It didn’t feel like “this is our last trip.” I didn’t have any “finality” thoughts ... just ... here we go, into the ambulance. I didn’t think anyone was going to fix him, or that we were going to somehow return to the house in a more stable condition... I didn’t have those thoughts. Just: This is next. This is what we need to do. And so we did.

The women at the unit were lovely and gracious and sweet. While they situated him in his room, they took me away to do intake paperwork and interview. I remember resenting the time it was taking them to hook him up to things and WHAT WERE THEY DOING IN THERE AND WHY CAN’T I GO IN? and I HAVE ANSWERED THESE QUESTIONS SO MANY TIMES but I sat with a nurse and went over his history, his medications, his current condition. I remember pleading with her - “it’s been so long since he’s had a drink of water. I know that it’s not necessary at this point ... I just feel like if you could maybe give him some fluids?” and she explained to me that it would actually do more harm than good to do so. I knew that. But I also didn’t.

When I finally entered his room, my dad had beat me to it. He sat, always stoic, in a wooden-armed hospital chair, gazing at the man he’d come to love as a son. I was immediately grateful that the nurses had obviously cleaned him throroughly, changed him from a hospital gown into a respectable man-shirt*.

He was awake. Truthfully a bit more aware than he had been when we left the house. Slightly elevated and surrounded by sheets and an actual blanket. I sat down beside his bed and held his hand.

“I love you.”

“I love you, too.”

“I hate your school.” **

“I know.”

His eyes closed at some point, and dad and I talked quietly about I have no idea what. The nurse returned to say that there was a suite we could move to so we would all have comfortable places to sit. We changed rooms, and I called his mother.

“We’ve moved Ian to the hospice unit at the hospital. I don’t know that he has hours or days, and you don’t need to rush here, but that’s where we are.”

She was, at that moment, at the hospital with her father, who had just suffered a massive stroke. I told her to be with her mom and dad and that it was okay ... she declined and said of course that she’d be right there.

At the suite, there was a couch-bed, a table and chairs, a telephone, a television maybe? lamps, an easy chair ... such a far cry from the hospital rooms and waiting areas that it was like entering someone’s home. I lie down on the couch, scoping out my spot for tonight; I would curl up here and try to rest.

Carol and her husband arrived. She sat as his bedside and talked to him ... I honestly don’t know if he was talking at that point; it was a separate room with a door. I felt like that time was private to them and grasped at some kind of “settling in” feeling. I looked at at the recliner: my dad has slept in a recliner for years at home, as it provides the most support for him and he has trouble in a regular bed. Carol and Dale had decided to stay the night, and so I looked at my dad, who had spent COUNTLESS nights asleep in an ICU chair (barely more than a folding one), and told him to go ahead home. Dale could sleep in the recliner, and I would camp out here on the couch. Carol had the nurses bring her a mattress for the floor beside Ian’s bed; she, too, was exhausted, and didn’t want to leave Ian’s side. She fell fast asleep.

I think there were phone calls and texts in there - letting everyone know where we were and what was going on. There had to have been, but I don’t really remember them.

Lying there on the couch, I could hear Carol’s snore, Dale’s snore, and Ian’s non-snore snore. It was a loud, awful drowning noise, but it was rythmic. I drifted to sleep.

At some hour, a nurse came in and said, “he’s had a decline. we thought you would want to know.”

I went into his room - the lights were very low. They explained something about oxygen levels or breathing or some kind of indicator that things were progressing. I asked that they move him over and I crawled into bed, under the blankets, curled up beside him for the first time in months. His body didn’t shift and accommodate; it was an odd feeling, knowing no matter how much I squirmed around, he wouldn’t do the half-awake adjusting one does when curled up in bed. His breath-noise continued. I put my hand on his chest. I talked to him ... I told him I was there and that it was okay and we were all going to be okay and that I loved him. I sang him our wedding song, over and over. I stroked his cheek. I fell asleep, I guess, off and on, becoming startled at a louder exhale and noise. I put my hand over his mouth, in a dazed effort to calm him — to make him stop making that horrible sound, I’m sure, but also ... it felt like it was such a struggle for him. I wanted him to stop struggling.

I woke up to quiet. I sat up a bit and looked at his face. I could still see him breathing and felt his heart and warm skin. It was around 5am. I sat up and looked at my phone - lots of messages from lots of people. Love and love.

I turned and watched him... and soon I just knew. I put my hand to his mouth, I tried to feel his heart, I strained my eyes to look and look and see and sense and feel ... I laid back down and sang again. I stroked his cheek again, and did I imagine it felt cool? DId his lips look a different color? The sun was breaking and the morning color ... I’m not often aware of sunrise light. I texted my parents: “He’s gone.”

I pushed the button for the nurse to come. She softly entered, held his wrist, looked at him, and told me that he had passed away. Just as she was doing so, his mom stirred and stood.

“He’s passed away.” She burst into tears. “Oh, no.” she said. What else is there to say? It doesn’t matter that it’s not something to be denied. You’re not in denial. It’s just NO.

————————-

I didn’t often lie with Ian in hospital beds. Sometimes he was in dire straights, and there were too many wires and not enough space. Sometimes he was at home and resting comfortably and I didn’t want to disturb him. Or we had visitors. Or I knew I wouldn’t be able to get sleep I desperately needed. Or something else needed my attention. In the months preceding his death, I had begun to separate myself from my best friend, lover, husband and companion, and had become his nurse. It was an awkward friendship; I’d do absolutely anything for him, and yet I pulled back affection. His love language was touch, but the most he received from me was physical care and medicine administration. Why didn’t I just crawl into his home hospital bed? Because I just couldn’t.

And that makes me sad.

*a wonderful thing that hospice does for patients is to cloth them as normally as possible. They take garments and cut the backs out, using Velcro closure, so the patient can lie in a comfortable nightgown or polo shirt. This is a beautiful thing.

** an unfortunate part of our shared cultural vocabulary was the entire contents of an ill-conceived Adam Sandler comedy album, committed to our adolescent memories. In one of the less raunchy routines, Sandler imitates a cheerleader frustrated with a pep-rally audience who refuses to participate. In a final sobbing tantrum she yells, “I HATE MY SCHOOL!”. It’s a phrase we used frequently to express discontent at far less serious situations. It became the last phrase I uttered to Ian with his eyes open. I do not regret this, as it is amusing, but it IS a little awkward to explain 😃

2016-09-26T17:54:00.001-04:00

I don't consider myself particularly sentimental.

On Ian's birthday, I didn't have the sads; truth be told, I didn't think of it as any different of a day. Others did, however, and reached out. (Bless you, friends. I appreciated it very much.)

Last month I visited my grandmother. After our chat, we got up to leave, and I told her we'd be back again soon.

"Sounds good," she said. Exactly the same words, in the same cadence, that Ian said often, in response to many people and things in the last months of his life. It was his go-to, reflexive response because in the end, he wasn't capable of translating thoughts into speech. "Sounds good" rolled off the tongue as his default "see you later," or "okay."

My grandmother's innocent statement brought a white-hot flash across my face and into my chest. It was a weird, completely unexpected association. I'd prepped myself: Don't think about nursing facilities and equipment, don't look for decline and neuro deficits. Just visit with Gramma. But those words reached out and grabbed me from the depths of memory and sensory and sucked the air out of my lungs.

For just a second.

I think my sadness is about the illness itself. How it robbed him and us. I HATE the things that represent Diminished/Ailing/Failing Ian. I don't want to remember medical supplies or altered facilities or his swollen face because those things supplant memories of Well Ian. Healthy, happy, smart-ass, giggling Ian. Right now the last months' hardships cloud the previous, joyful memories. And that pisses me off.

As we sat at the dinner table on his birthday, I offered: "I thought that since today is your dad's birthday, we could go around and share a memory we have of him."

Squirming.

Silence.

Audrey recalled he had a bowling ball cake last year.

His own life partner of 20 years was stumped to recall a single happy memory. The nothingness stung.

I think my brain is protecting my heart. If I conjure and dwell on the things I remember, or the things we'll now never get to experience, it will crush me. And so God has given me only small bits of grief on which to chew.

Sounds good.

Even Less Sugar: A Graceful Goodbye

2016-09-08T15:12:00.001-04:00

It’s been almost two months since Ian’s memorial service. I’ve tried several times to post about the beauty of the day and what it meant to me and my family … but I have come up short. Instead, here are some photos of the grave-side military honors, followed by a link to the service itself.

What you WON’T see is the way my kids carried themselves, culminating in each of them getting up at the reception to speak in front of hundreds of people about their dad. MY KIDS ARE AMAZING.

photo credits Greg Pelka

Memorial Service for Rev. James Ian Maize

Even Less Sugar: The End

2016-07-14T12:36:00.000-04:00

As I assume you will have heard by now, Ian passed away, one week ago.

I've been avoiding this post, not because I have been unable to put words together, nor because I have been too wracked with grief to journal my thoughts ... but because his last days were both pain and beauty and private. As public as I have been, via blog and Facebook, etc, there are some things that will remain small and close and intimate.

-------------- some timeline ---------------

On Wednesday, Ian still had quite a bit of fluid and an awful, drowning cough. I started to witness "seizure activity," something he'd never experienced before. The last straw was when friends moved him up in bed, and he finally got a cough out ... but it contained blood. It was clear my ability to handle this at home (read: alone, overnight) was done, and he was transported to in-patient hospice.

The nurses deemed his breath "extremely labored." It sounded like a snore ... but in double time. And loud. In the middle of the night they woke me to say he had experienced another decline. They helped move him, and I spent the rest of the night by his side. At 6:30 I realized I hadn't heard that awful noise ... I sat up a little ... and I knew. I held tight. I sang him a song. I called the nurses in and they confirmed.

It was surreal, and horrible, and beautiful, and cold and warm and sad. I didn't sob. I breathed.

------------ [private family grief stuff] ------------

.~.~.~.~.~.

---------------------- logistics ------------------------

Ian was an organ donor. I made the decision a few months ago to pursue having his brain donated to the cancer center, in hopes that someone else would soon be spared this awful disease. (Yes, Ian was on board with donation of any kind).

We had many "final arrangement" discussions, and Ian had always requested whatever was "easiest and cheapest" ... the old "pine box or ashes dump" kind of conversation. Then he would look at me and say, "of course, you're going to do what you want anyway, so ..." Funerals are for the living, and in our case, for the children; it is for them that I make these decisions.

So now I had thirty minutes for the actual choice; send Ian's body to Pittsburgh for the autopsy, or zoom to camp and back with the kids to say goodbye again*, negating the ability to donate but affording them the opportunity to see him. If I'm doing all this for the kids, what makes the most sense?

I chose the former; I didn't want to rush their grief. "Hi, I'm here, guess what happened, pack your stuff, let's go see him" just felt wrong.

----------------- my amazing children ------------------

I had prayed and pleaded with God ("Please, God, let the kids get through two weeks of camp - to be kids, make friends, have fun, and to not associate camp with me coming early because Dad died.") I had the "gathered at bedside at home" picture. The final words thing.

And God said, "How about this? How about I have them go to camp, meet new friends, share their situation and be prayed over and loved on, still get to be kids in light of this trauma but be separated from those very last, non-Dad moments. You will bring them home and hold them close, but they will return to that fragile but deliberately constructed nest to again be loved on and prayed over by a giant group of Christian peers and counselors. And they won't associate HOME with his passing."

Ah. Right. It's the whole "My plans/your plans" thing. Noted.

So the kids came home, albeit reluctantly, that evening. We had a private viewing just for them at the funeral home the next day, and after choosing some happy Dad pictures, back to camp they went, munching snacks and grieving in little pieces but smiling as children should.

There are many things I could post about the things they said and did, but I will not out of respect. I will say this: I allowed them to grieve as they wished -- to choose what they needed to do and say and think. I honored, as much as possible, their desires both to be given space and to be held. And I assured them that all thoughts, including, "can we just get back to camp now?" are good and okay and acceptable.

---------------- prescriptives -----------------

Do NOT tell my son he's the man of the house, and to take care of mom. HE'S NINE. HE ALREADY HAS A COMPLEX ABOUT KEEPING EVERYONE HAPPY.

Do NOT tell my children how their "dad would have wanted them to" respond/live life/think of him.

Come to think of it ... just tell them you loved their dad and know that they miss him and that things are hard and it sucks.

Because it does.

----- the obit: summing up a life in several paragraphs -----

Reverend James Ian Maize

~our last family moment~

Even Less Sugar: Creeping Up on the End

2016-07-01T07:06:00.000-04:00

Hello, friends.

Not long ago, we officially transitioned Ian to hospice care. The nurses are lovely and available, there is minimal disruption and chaos, and we are just at home, being.

That being, however, changes slowly but significantly, by the day.

Ian no long rolls himself to sleep on his side (his preferred position). He leans a bit and is unable to correct it. He has lost most interest in food.

Yup, you read that right: Ian + Food = Not so much.

He understands everything, and his face still responds to the appropriate emotions ... albeit a much less wide smile and sharp twinkle, they're still there.

But they are fading.

His eyes don't focus as much, so he has a bit of a walleyed look. His voice is a whisper, and unless it's a common response in context ("thank you," "I love you, too," "Sure," "Nope,"), there's little chance of understanding what he's trying to say. But he doesn't try too hard anymore, either.

Last night he seemed alert but confused. As I have done MANY times before (due to his short-term memory loss), I explained the reason he lies there, unable to communicate.

"We're nearing the end, hon."

Furrowed brow: "Really?"

"Yes. The chemo drugs stopped working. The tumor is growing, and that's why you can't brain or speak and why you might be confused about things. I'm so sorry."

Tears used to fall after this conversation, but yesterday he stared, blinked heavily, and stared some more.

I told him that I had no idea what my Ian would want to be sure I knew or considered or took care of at the end, but that he didn't need to let any of those thoughts trouble him. I have people taking care of the important things, and although we are all going to be sad and angry and depressed and lonely and hurt and hollow, we're going to be okay.

"Everything that you would say to someone before you die you've said. I know you love me, and the kids, and you want what's best for us, and you're sorry to be leaving us. You don't need to say any of that - we know it. Just be at peace, tell me if you're in pain, and let us take care of you."

I've discussed funeral and burial things with the kids. They've both had their private "tell Dad everything you want him to know and would regret not having said" conversations. MY. KIDS. ARE. AMAZING.

Ezra is the sweetest, most empathetic child I have ever met. He just wants "everyone to be happy," "knows God has a plan even though it's not what we want," and "we should have a train that runs through the entire house so it can deliver stuff to us" [proceeds to detail the route, in excruciating detail, through every room in the house, while sitting with me in the dark on the porch].

Audrey had a dream that Ian passed away and "I didn't get to say stuff, so I made sure I did." She is joyful and bubbly, and clings to me just a little (not her M.O.). She is pouring on the funny and laughter (yes, I know she's overcompensating and hiding the pain) to lighten the mood and cheer me.

They are both heading to camp on Sunday. For two weeks. Two VERY uncertain weeks.

Would you please pray with me that Ian holds on until they return? I'd like them to say goodbye in his final moments. I'd love for them to not associate yearly summer camp with Mom appearing way too early, walking up to tell them the sad news, and taking them home early. And if none of that is possible, please pray I parent well and according to their needs; that I'm able to share grief and hold my babies and absorb their tears. That I can point them to Jesus, Who does not falter or fail, without "sounding like the people who are supposed to say that" (guess who?). That I continue to make wise choices for our family in light of our new reality, and that people accept those choices with grace.

This long road will soon reach a bend, but will keep meandering through forest and field.

I miss my best friend. He wanted to do this hike with me.

Even Less Sugar: The Post We All Knew Was Coming

2016-06-08T12:00:00.001-04:00

How do I write this post? Is there a gentler way to say we have reached the end of things?

Ian's last appointment showed no tumor growth ... however it also confirmed what the doctor suspected; the immunotherapy drug has had no affect on the tumor, and Avastin, the anti-swelling drug, is all that is keeping it at bay.

"And tumors figure out Avastin rather quickly."

Quickly, as in months.

So there it is: we have months.

We will continue to receive MRIs/treatments every two weeks, as Ian's able to tolerate the travel and desires to do so. At some point those treatments will not be beneficial, either, but I think we do them as long as we can.

When the tumor starts to ignore the Avastin, decline will take weeks. There will be further cognitive and mobility decrease, but not necessarily any pain (at some point one would think the pressure would cause pain, but I'm unclear on that).

Yesterday was a decent cognitive day for us ... which meant a good talk, although it meant a substantive talk, as I have to take the opportunity when it arises to talk about important things ... and so it was a tearful talk. We went over the past year, as he remembers none of it. I showed him pictures on the phone that went along with events, both in and out of hospitals. Goat, I read your fb post following the reunion dinner; he said thank you many times and wept.

Monday there was a (no kidding) murder on our street. It was quite the distraction from the reality of our situation. All the commotion and excitement gave the kids some breathing room after I sat them down and discussed our coming weeks and months.

MY KIDS ARE AMAZING.

I am tired.

But we press on ... this is not "news," even in its finality. Ian does not fear death and awaits meeting his Savior. He's just a little sad.

What can you do?

* Check in on us. If you've "been meaning to visit," do it soon.

* Shepherd the kids. Please treat them like NORMAL KIDS plus a little tenderness. You don't need to "be sure they know you know" or are available to listen - they know Mom gets the word out and most people know. Don't ask about their dad. You can ask about summer plans, school in general, books, legos ... You can say, "how are YOU doing?" and give a glance ... But then let it drop. You don't have to "watch what you say" but if you could avoid talking about cancer or funerals or that type of thing, that'd be super.

* Fill needs as they arise, when you can (rides for the kids when I can't leave are most needed over the summer, and distractions for them as well, especially when things go "bad").

* Sometimes I need to blow off steam. Sometimes I do the ostrich thing, sometimes I do the sleep all day thing. Sometimes I really need some funny. (Really, I can almost always use some funny.) I know you don't know what to say. That's okay. Say it anyway - I promise nothing will be wrong. You can't help you don't know what I'm going through, and I wouldn't want you to. Just don't be silent for want of what to say.

If you want to contribute tangibly, I think I singlehandedly keep amazon.com in business .... we can always uses GCs to that and Giant Eagle. We don't get out much, so GCs to local restaurants aren't of much use right now, and people are generous with providing us meals. Special porch treat surprises are always a beautiful hug for the day, as are flowers, now that they're blooming. Cards are MAIL! which is always good.

Be kind to one another. Small kindnesses and smiles. Keep perspective, in Ian's honor, about what matters, who matters, how you can show love to your fellow man. Hug your kids, smell the flowers, breathe the cool air. Ian would not want you to be sad for him, he would want you to wrap your arms around us and keep us afloat, and to pour out God's love to one another.

Even Less Sugar: Running Out of Respite

2016-06-01T15:35:00.001-04:00

Hello, friends.

For the past two weeks, Ian has been working hard at rehab. This stint has looked different than others, as he has had some decline in ability and mobility, but still he has made measurable progress in some areas.

I don't want to focus on the deficits other than to say: he doesn't walk, he transfers. He doesn't use his right arm/hand, but he can eat just fine with his left 😃 .

The biggest issue is, and will likely always be, his inonsistent braining. Yes, he has declined in this area overall, but its very unpredictable nature has made this quite the experience in navigation.

Example: his physical fatigue is easily correlated to time of day and activity. Late in the day, don't ask him to stand much. Ok- good, we can work with that.

But right out of the gate, in the morning, we have a 50/50 chance that his brain will be talking to his limbs. Is he able to follow directions ("move your right foot," "now sit down")? or are we going to struggle with each direction ("Your spoon, hon. Use your SPOON." And if that's the case, (and this is important), how will things be in an hour??

In other words, we're up and down, day to day, as well as within the day. I say things like "good braining day," but that's oversimplifying this web of confusion we live in.

On Sunday he will return home. He's anxious to do so; hospitals are lonely, and I think maybe much more so for someone who is frequently confused and/or has little short-term memory. (Not knowing what time of day it is, what day it is, who was in to visit, etc).

Back at the house, I have people helping me getting things more Rev-Ready. An outside ramp is in the works, in-home therapy will begin, and we're still working on that stair glide and shower ...

In short ... the hard work will begin again, in the home setting. I'm going to call on those who have offered to help so we can maintain sanity and maybe squeeze some normal into our days, at least for the kids' sake.

(Caregiving burnout is a very real thing.)

Even Less Sugar: At the Hospital. And That's a Good Thing

2016-05-19T17:30:00.001-04:00

So just a little update on things in Rev land:

We had an appointment scheduled for Monday (for MRI and chemotherapy treatment at the Cancer Center). Based on a few less-than-stellar braining days, I was concerned about transport to the clinic. After consulting with staff, we determined the best thing was to skip the line, as it were, and head on in to be seen. NOT for an emergent issue, but rather a two-bird-killing exercise.

I sent out a plea to facebook: please, help me get him into my car, so I can take him directly and not rely on an ambulance (and therefore also go via the emergency room, etc) or call a van service, to be arranged via the ever-so-unhelpful-and-late-to-the-party VA. POOF: six people showed up, carried his wheelchair down the steps to the front walk, loaded him into the car and waved us on.

Our oncologist went ahead with the chemotherapy treatment and admitted us to the hospital for the MRI. This meant observation/hospitalization which I'm not shy to admit meant some rest for Rachel. I stayed across the street at the Family House (such an awesome place) without worrying about Ian (much). Apparently he was confused overnight (of course!) but was otherwise in fine spirits when I came in this moring.

The MRI shows NO NEW GROWTH. Stable. We'll take it! It's only been two prior treatments, so that's encouraging news. Of course it's not "wow, it's gotten smaller!" news, but ... we take what we can get.

Next Steps: Ian will remain (as one doc here put it) in Hotel Shadyside for a few days. He's had PT and OT and Speech therapy (after a fashion) and will continue to receive them while here. He will then be discharged to a facility close to home for a little in-patient rehab therapy. For how long? Who knows.

What's next?

Who knows.

The point is: we're at the hospital, and as much as that might seem like another awful incarceration, Ian doesn't much care, I get a bit of respite from being on call 24/7, and we have a (short) path forward.

I can't remotely forsee what the next weeks and months and years? look like, but what I DO know is that I have an amazing network of people who are itching to help. You have loved on us so much ... I am overwhelmed regularly with your generosity and love. Oh how I long to reciprocate.

Since I've gotten messages and phone calls about ways to help, I will do my best to come up with things for those from afar and a-near. With summer coming, I anticipate needing to find someone to taxi and/or occupy the kiddos, if I'm to be at home. If Ian is home and in a state to be trusted alone with "regular folks,"* I may need a cardre of watchers so I can get myself to karate, a haircut, whatever. And the ever-present meal needs remain (why do these people have to eat EVERY day?).

Thank you for past, current and future kindnesses. I'll be in touch.

* LOTS of you have offered to "come sit with Ian" while I get out. Here is why I haven't called you: Currently my only real need for care in my absence is getting him to the bathroom, or to use a urinal. These are not things I would expect of a family friend (they include more intimacy and odor than you'd want), and on a BAD braining day would be quite dangerous (think 6'1", 230# crashing down). I can't be farther away than it takes to make it back to address a bowel movement, so me "getting out" is not a reality. Them's just the facts, y'all.

Even Less Sugar: The Bad News

2016-05-02T23:20:00.005-04:00

I've procrastinated writing this post. I wanted the bright light of Ian's ordination ceremony and celebration to shine over us. For a little while, we could celebrate a triumph of faith, will and spirit.

And we did.

Now it's time for the other shoe to drop:

Two days before Ordination, we got the news:

The reason for Ian's deficit in cognition, memory and balance is that his tumor, which had previously been identified as a Grade 3 Ananplastic Astrocytoma, has morphed into "Grade 4 Glioblastoma-like" behavior* (as in, they believe it to now be the latter, but without biopsy, which we will not endure again, it's not an official diagnosis).

The temozolomide regimen --which he was only able to undergo after clearing the infection and subsequent leaks and shunts and surgeries -- is no longer effective.

The doctors have recommended a new regimen of avastin and an immunotherapy drug called nivolumab. They are both administered via IV, bi-weekly.

Okay, that's the cancer stuff, but how IS Rev. Maize?

Since his initial injection, he's had a few gastrointestinal side effects and his appetite and awake time have decreased significantly (a few days ago, he woke only for his morning and night pills. He refused food and slept ALL day).

When he's awake he's pleasant. He can sometimes carry on a bit of conversation, but often his word-finding or confusion makes it difficult. He's able to get to the bathroom and into his wheelchair, but is unsteady on his feet and because a fall would be fatal (he's back on the drug which inhibits wound healing, which has the potential to lead to infection, not to mention delay tumor treatment).

The other day I crawled into the hospital bed to snuggle and chat. We talked about recent goings-on, news about people we know. I talked about his ordination. I showed him photos.

He remembers none of it. None.

Not a spark, not an "oh yeah" look of recognition. He was amazed at the number of people who attended. I described the meal and the closing off of the street and named as many attendees as I could from memory. Tears ran from his eyes. He was so, so deeply sad to have no memory of the event. I asked him if he wanted to watch the video, but he shook his head. It was too much for him.

We are living in a strange reality - a mostly-sleeping man lies in a hospital bed in the living room, with life lived around him. The kids carry on about their lives, but their mom sleeps on the couch and isn't "present" for them as much as she'd like to be. We try to do fun things, get to appointments, stay connected. But it's difficult. I'm not able to leave him for more than a few minutes alone (even to a different floor) because he's confused enough he will try to get himself out of bed, even though the "gates" are up. It does no good to remind him of that, or to tell him to call for me before he tries to get up ... he doesn't remember the instruction. (I use "Nanny Cams" for this reason.)

It's a waiting game, now, again. We can only hope the current regimen has success and the tumor recedes. If it does, will any of these ill effects go with it? We have no idea.

And so, my friends - pray for us. That the tumor shrinks, that the every day is bearable, that the agencies and organizations that can offer us help are able to do so. And for our hearts. It's already been a long road and we have no way of knowing how long it will be.

* Typical median survival for anaplastic astrocytoma is 2–3 years. Secondary progression to glioblastoma multiforme is common. Radiation, younger age, female sex, treatment after 2000, and surgery were associated with improved survival in AA patients.

~~For a very good explanation of brain tumors, and Ian's type (s), treatment, and other insights, read over this brochure from the American Brain Tumor Association.

American Brain Tumor Association