On the Monday before Dave died (during a wee hour on Wednesday), I went shopping. Over the last couple of weeks prior, getting out for a few minutes for groceries, work-out, drugstore items or a little breather was difficult both emotionally and logistically. Over the previous week I had been looking for some stationery notes, something Dave could pen just a small “love you” to his kids, in his handwriting. I don’t know why but all I could find were flowery, girly cards. I suppose an index card would have work, but I had in mind a nice keepsake card that could be tucked inside the memory box I am having made. I didn’t have the energy to put some kind of card together myself at that late moment.

We had talked about this project long before, but the life and death and care factors got in the way somehow. The last week I could feel the pull to get this done. On Monday, I went to Hallmark finally, after having looked at several stores when I had other shopping to do. Hallmark did have the most acceptable cards, still not what I had in mind. Oh, well. I picked them up.

On that Monday afternoon I let Dave know I had finally found some cards. We could do them in the morning when he was fresher. As we talked about it, he surprised me with saying that he really just didn’t know what to tell me. He wasn’t sure he could express what I have meant to him in his life. This was the closest moment to him crying about his own mortality that I witnessed. (Boys, and especially Tulsa boys, don’t cry. He wanted to at varying points during his illness, but as far as I know he never cried. He never mourned for his own life.)

So he did his best to tell me but clearly not to his satisfaction. I was satisfied, yes, because we have lived many of the last years with me in the know about how he has felt about our lives (and vice versa). I had no doubt, nor need for reassurance. For that I am very grateful. So this was our moment of “good-bye.” I felt it then, I know it now. I thought we might have a few more days.

The next day, Tuesday February 14, was the true beginning of his end. From my unfinished journal that evening:

Tuesday, February 14, 2012
Valentine’s Day Evening

It’s like a holiday around here. Laughter. Family. Stories. It’s an open house. There are folks in every room – Bedroom. Family room. Living room. Kitchen.

At 5:00 this morning I was awakened by Dave’s coughing. I vaguely remember hearing bouts of coughing off and on in my sleep. I don’t know how long; I don’t think for long. Then an urgent cry for “help” rang out. I was around to his side of the bed reaching to sit him up before I knew what hit me. He gasped for air. I could feel and hear his panic. Sitting up was crucial.

Everything has changed.

I gave him some pain meds, calming meds from out of the “comfort” pack, provided by hospice especially for this time. I sent a text to Leah to call me. Fortunately, we had just talked last night about the phone tree. I call her. She contacts the others via text message. It was only 5:30. I still wanted to be polite and not call yet. But I did not want to be alone. I should not be alone. They all should be here, too. Now.

We sat for a couple of hours, well, I held him up for a couple of hours as his body leaned forward into an almost fetal position. I propped pillows all around us. Calls began to come in. Family would be gathering soon. I called Leah back. Can Scott come and help lift Dave back into bed? She sent him right away. At 6’5” he easily and carefully picked up Dave’s frail body and righted him in bed.

At that moment of writing, Denise, who had been sitting with Dave called out. “Joan, come here, his breathing has changed.” So Leah and I came in and sat with him. Yes, his breathing has changed to the raspier, heavier, gurgling breath of dying. The room and atmosphere was relatively calm. One by one, everyone arrived upstairs eventually. His children, their partners and even a few grandchildren. Individuals moved about the room, finding their position, I imagine we were trying to make sense of what might happen. How do you do death? Listening, talking, even singing. But after what seemed like a long while, it was clear that this vigil could go on for a long time. Or not.

It was by choice that all were going to their homes for some sleep, except the two oldest, Dawn, along with her husband Richard, and Dana who would stay the night. Then we would gather again in the morning. It was understood that Dave’s last minutes on this Earth could come through the night. Or not. But they did.

Dave had been moved into a hospital bed within the master bedroom that evening, (That was an all-family event to transfer him!) The hospital bed was shoved up against the end of the master bed for the night. I pushed the covers aside and fell asleep across the foot of the bed parallel to Dave holding his hand as I have done throughout his illness. I think it was just after midnight, maybe 12:30 when we went to sleep. I set the alarm for 4:00 am for another scheduled dose of pain medication.

I awoke at 2:30 am or so. Dave’s breathing was very heavy with some coughing. It was that same scary feeling I’d had in the early morning. He was gasping, but not so fearful and desperate. I sat long enough to determine that I needed to awaken Dawn and Dana. It had been such a short sleep I thought. They came to be by his side.

His breathing was difficult. For almost an hour he tried to catch his breath. It hurt to watch. Dying is so alone and so personal. “Profoundly personal” has become a recurring term in my vocabulary recently. This was profoundly personal. I really wanted it to end for his sake. I tried to reassure him with my presence.

Can’t we do something? Dawn asked. Get him some pain medication?

I prepared another 1/2 syringe of liquid pain killer along with delivering a drop or two of atropine for secretions. I figure it was symbolic at best and certainly wouldn’t hurt anything. And maybe help. Very slowly I added a few drops from the syringe vial in his mouth so he could swallow or absorb a bit at a time. I looked into his eyes to tell him we were doing our best to help. Try to swallow I’d urge, and give him a touch more, like feeding a little broken bird with a dropper.

He calmed very quickly. Maybe we all did. His breathing was not so labored. It seemed like an almost instant change to me. But I have no sense of time. In my mind it became just him and me. If the eyes are really the window to our soul, then I saw his. And we danced. The last dance.

Those few minutes, and I can’t really say how many there were, we talked. There were no words spoken aloud, he didn’t have any voice. But our mouths moved as we talked. Our eyes were locked on each other searching deep inside.

It was a reminiscent exchange to one we had a week earlier when he sat up in bed and waved to me, his eyes cloudy and his expression like that of a six year old playing with a stranger. I could see the child in him looking at me. I could see in his eyes he was elsewhere. First he waved with his wiggling fingertips, and watched me. I waved back with my fingertips in the same fashion. Then I made a parade wave with my palm, and he mimicked. We went through a few more gestures and I laughed. Obviously, he straddled two worlds. But now, in the last moments of his seventy two year life he was moving from one world to another. We carried on in a profoundly personal exchange, silently mouthing proclamations of love and protection. And even though it makes me cry to think about it, it simultaneously makes me smile, because dancing is joyful, and we had this last one together.

Then he disappeared. I realized his mouth stopped moving, the words were gone and his breathing was no longer. I said aloud that he was gone but I wasn’t convinced at first. No breathing. I can’t see it, I can’t feel it. Pulse? It seemed there were a few very slow sparks of energy. A bit more time passed and his life here was fully gone. 3:38 am, Wednesday February 15, 2012 PST.

*  *  *

What I know from this moment is that no matter how long or short of time on hospice, no matter how well I prepared for and anticipated Dave’s death, there is never enough time. There is something left unfinished, unsaid, to be done. There is always hope for one more minute.

We had the most incredible year of our lives together, this last one. It helps define the beauty and road of the path we traveled. Not everything was perfect by any means, but it was our lives. We grew together these past 32 years, 28 married. We learned about love, parenting, forgiveness and everything human. We discovered friendship, laughter, pain and sorrow. We developed independently and together. We were smart and dumb at different times. We were educated and intuitive. We completed each others’ thoughts. We had dreams reached and dreams unfulfilled. It was simply our lives, profoundly personal.

♥

On Wednesday after Dave’s death, our daughter Leah stepped into her dad’s office to take a phone call in privacy. She came out with a polaroid photo that has sat on his bookshelf for many years and asked me to scan it.  Here is her Facebook post and the picture  announcing the loss of her father:

Leah's Facebook post February 16, 2012

♥

Dear me and you (family members):

This morning I am struck mightily by the thought that we have crammed what is typically three days of mourning into a 24 hour period. Or maybe it just feels like three days. “No memorial service” in this moment does not mean that death ritual and time is not required to process what has happened around us. There is no preparation for the emotional side of loss even when death is expected, imminent or predictable. What you feel is what you feel. Accept the time and attention to feel in the moments that break through the numbness or fog.

The world will still revolve, stars will shine, projects will be done somehow in due time. No economies depend on our actions today. The overwhelming love that comes pouring our way may serve to exaggerate the pain, joy, anger, confusion and loss of the man and his deeds. After all, there are decades of words and touch to flood our minds.

Breath is life and my cry is breath “on steroids” right now. Wailing and silent tears both are cleansing. The ache in your head is to make you slow down and acknowledge the pain.

Sleep is nature’s healing. It slows your heart, your mind and your breath to a manageable pace. To wake is a startling reality check. You must tell your tale again to soften the edges.

Don’t operate heavy equipment. This includes the phone. That’s what friends are for.

This day is just the baby steps of the new journey. The time known as the “new normal” that will slip into bring normal one day. Life has changed for you forever. Don’t try to make it any different; you can’t. Yes, it is what it is.

Indeed.

* * *

The task of newly bereaved is to call people and inform them of the death. Over the year of our time on hospice I developed a call list of people especially important to Dave who might want to know in the immediacy of his death.  (I still have my grandmother Mom-Mom’s list in her handwriting with the names of visitors in her last weeks of life. She wanted this used to make calls I think. That memory was the reason I made a list for Dave).  This not only made my calls easier to accomplish, but enhanced our experience. Included on the list were key people in his work, music and life who could network out the information.

Dave stayed in our home from his time of death at 3:38 am to around noon. Because we are not holding a service or viewing in the next days, I was able to notify a few who came to say their final words directly. Perhaps this is why our one day has felt like three.

Before I hit send on the FB post I ran through a list of my friends and support and family members I wanted to make sure wouldn’t Hear-It-On-Facebook-First. Happily only a couple of folks slipped through. However, many of my daughter’s friends did hear it through this grapevine even without her posting on her own wall. Hmm… social media.

The following was posted directly to my family and friends via Facebook on Wednesday afternoon.

February 15, 2012

RIP David Lee Hitchens
September 13, 1939 – February 15, 2012

This morning Dave left our earth and transferred to a new consciousness. I believe him to be out exploring the Universe piloted by his nine-year old curiosity and his lust for learning. For now his body rests at the funeral home clothed in his Sponge Bob Square Pants jammie bottoms with a not matching gray check jammie shirt as he chose to wear most recently despite my otherwise coordinated wardrobe efforts! He gets the last laugh on me for this one. I happily relent. Accessories include his “Cancer Sucks” bracelet along with a pair of warm socks. I trust he is no longer constrained by neuropathy, cancers, missing parts or the physical things that made navigating an environment with gravitational pull difficult for him. The light he started here shines on brightly in our hearts and stories, and leads the way on his new journey.

If you have a Dave story to share, please post on his website linked here. If you’d like to offer your gentle thoughts of love and prayers this is a great place. If you are inclined to brighten our world with gifts or traditional flowers, we request you instead please contribute to the David L Hitchens in honor of Frances Marie Rasmussen Scholarship (linked from his website) to perpetuate his love for higher education and our love for him.

The entire and extended Hitchens family was fortunate to be together during the last day and hours of his life. A public Celebration of Life remembrance of Dave will be held in an upcoming month, date to be determined.

♥ See you later, alligator…

♥

“I’m starting to catch glimpses of some small handwriting on the fireplace wall.” Dave will spend hours sitting on the edge of the bed facing the electric furnace fireplace and mantle in our bedroom. “Fine, handwritten words,” he says with a gesture of writing in the air I’ve seen him do in his sleep. It conjures up an image for me of parchment paper with the Declaration of Independence script transparently imposed over the façade of the white wood.

“What do you suppose that is?” I asked.

“Hallucinations. Pressure on the brain. Lack of oxygen,” he said.

“Not a message from another world?” I wondered aloud.

“No.” he said.

“You are so practical, sometimes.” I let out a little sigh of laughter. I meant logical really. I have a hard time finding words these days, too.

“That’s how us Virgos are,” came the response. Even funnier – answering my question from a stance of analytical logic cloaked in astrology. But then, that is a Virgo.

Inch by inch Dave is heading into a new dimension. One the rest of us can’t attend with him. Inch by inch his body is failing. Something we have to sit by and watch.

It’s has been a difficult week for me. A week measured in those inches and in hours and minutes.

Physically I see more muscle spasms, twitching of his arms and hands mostly. Both feet are swollen often up through the ankles and into the calves. Maybe the left side decreases, but not by much. His right leg does not move on his command, it must be dragged when he walks, and lifted when he turns or sits up in bed. There is pain: pain that makes him cry out if I move him the wrong way; pain that makes me cry when I hurt him inadvertently. I empathize with him all too well after the hip pain and difficulty moving my own leg last December. There’s no cortisone shot for him to make it go away.

I noted to Dave a couple of weeks ago that his body seems to be split in half with the cancer symptoms. It is as if only his right side, the side most affected by his stroke, is under attack. It made me wonder about his brain, which has been relatively intact and communicative, although I have seen a beginning loss of his humor and mixed up language. Creativity is right hemisphere brain functions; logic is found in the left. Since his stroke was in the spinal cord, obviously below the head and brain, I wonder if these weakened areas are where the cancer is taking hold and spreading. It makes sense to me.

(One of the most influential books I’ve read in the last couple of year is My Stroke of Insight, written by Jill Taylor Bolte, a brain researcher who chronicles her own brain stroke and recovery. Amazing!)

Mentally, there are changes about Dave, too. Inch by inch the concept of time is shifting. He seems suspended in animation, usually as he sits up. I wonder if there is a line between awake and asleep. He can’t really answer that for me; an answer in itself. “In a minute” make take several. He responds to something said an hour or even a day earlier as if it was just stated. Time is marked by the next round of pills.

There is a slow motion quality to his presence. The other night as I followed behind him as he headed into the bathroom with the walker, I felt the same sense of caregiver’s support I have provided as a hospice volunteer to patients who need a safety net from falling but room to move independently as much as possible. It is a slow walk of determination and deliberate motivation to a destination. As he stepped up to the sink, I looked up to see an aged man reflected in the mirror contrasted with my own image behind him, younger, more able and carrying the pounds on my body that he has lost. It was a moment of stark contrast and a reminder of how inches become miles.

Every emotion has been heightened this week. Pain hurts more. Laughter is louder. Crying is drowning. Love is deeper.

Inch by inch the cancer is spreading and with it taking our time together further away.

♥

It’s already 9:30 am. It feels like most of the morning has passed. I spend more time waking Dave, getting his pills, Ensure, tidying up than needed in past months… our new routine. I find myself in more of a decision mode, “do this” or “that” rather than “do you want?” Like taking over the divvying out of pills, it perhaps is better for us both to have a leader. I guess that’d be me! Dave is apparently in agreement to hand over the reins.

I have several narratives in my head piling up, indicative of the amount of changes going on in both Dave and me. Sticky notes dot my desktop and notepads reminding me of statements, ideas or things I think I don’t want to forget about this journey in its profoundly personal way and/or in consideration of the generically human experience of life and death.

Here’s some highlights from the last couple of weeks for which I could probably write an entire post on each:

• Dave did not want to be left alone last night. Leah was here for her regular visit and to catch up on a lost episode of Real Housewives. Seems the DVR, which is in the family room, skipped the recording this week so we didn’t have it on Monday. It happened to be repeated last night while she was here. Dave offered that we could watch it upstairs in the bedroom with him. He just wanted us near. We did. I, too, have had distinct moments of not wanting to be alone recently. I haven’t quite been able to express the need and place from which this derives, but it seems more primal than just having someone nearby. It’s a desire to not be alone or to witness the time together. Visits and sitting together is increasingly more important – to all of us family members I think.

• Anxiety is a new vocabulary word for Dave. In the past month he has discovered that an anti-anxiety pill can be very helpful in some of the circumstances and procedures we find ourselves. It came in handy to name and respond to having anxiety during the snow storm.  He knew anxiety when he had Hodgkins cancer in anticipation of the chemo treatments actually, although I don’t recall addressing it that way.  It takes some adjustment on my part to realize that Dave just might be fearful in the face of these times, and in spite of him saying he is not afraid of death per se. (Who wouldn’t be afraid of dying?) Nonetheless, having anxiety isn’t a term I would normally associate to his demeanor and surprises me in some ways. (Understandably, anti-anxiety medicine is one of the items found in the hospice “welcome” kit .)

• I need laughter and exercise and self-care. We all know this but having missed a few weeks and now managing to return to my scheduled work-outs and friends this last week, I am revitalized for the extra duties of care. I especially look forward to watching TRU-TV’s Wipeout on Fridays, a dumb show of adults willingly subjecting themselves to a padded obstacle course guaranteed that participants will bounce off big balls, or be swept into an oversized dish of soapsuds or punched in the face by automated boxing gloves and go ass over teakettle along the route. But for some sadistic reason it makes me giggle aloud for a couple of mindless hours every time. Laughter is a breath of fresh air. Plus, it gives me notice that it is the weekend and we’ve made it through another seven days of life.

• After we broke the ice in the conversation specifically about Dave’s end of life, we have carried on a couple more deep talks these recent days. In our second dialogue, I asked Dave directly about if he had envisioned what his last minutes might look like, if he could describe his thoughts, fears or best scenario. I suppose I want to know how to fulfill the ideal end of life moment for him, if possible. I also want to know how a dying person thinks, in a strange curiosity. His answer was “I don’t know,” a very common answer lately. “That’s how far away I am and how close I don’t want to be.” I think of this moment as pivotal in us confronting his death aloud, and perhaps the start of Dave’s search internally. The unintended result of the conversations are his having some feelings of depression (one conversations began as his “feeling pitiful for himself.”) but also some significant talks about relationships.

• Our conversations led me to one morning’s thoughts on being prepared to die. Dave, of course, reiterates that he is not ready to die yet. Then, I had an insight that I was prepared for Dave to have died but not for him to die. (In parallel fashion to one of my favorite quotes from Pearl S. Buck “I hate to write; I love to have written.”) I can see my way to envision my life a few months after Dave’s death, but I am not prepared for his actual dying and death. Nor is Dave. I believe that is what we are doing at this moment. For him. For me. For his kids and extended family. (It’s odd to think this is taking place a full year after the obvious threats to his life began.) There are the logistical, the emotional, and the actual physical aspects to consider. Interestingly to me, when I shared this insight with Leah she offered the perspective of feeling prepared for him to die, yet unprepared for how she may cope after he is gone.

• The will to live. Such an amazing thing is the brain. Dave’s sense of curiosity and desire for life still prevails, and I’ve no doubt the reason he is still with us now. After watching the documentary on the 1930′s Riding the Rails with Denise and Chuck, Dave’s wheels began turning for a new lecture.  You can take the man out of the classroom but you can’t take “Teacherman” out of Dave. Sadly, it was clear he was tired and the brilliant lecture did not burst forth as it would have in bygone days.

• We’ve officially requested two visits a week from the nurse. Yes, my in-between calls have increased. There are many more smaller things to attend to and ask questions about on Dave’s care. I so appreciate the access our nurse and support hospice provides. It’s a comfort thing for us both. Nurses and doctors and medical persons still talk to Dave in terms of seeing him next month or in a couple of months. What I make of this use of language is that there is still no impending sense of immediacy in his demise. And though Dave doesn’t appear to be in a stage of approaching death soon, his health changes and slowing body warrant the additional attention. How confusing is that?

• I get these ideas in my head that this journey, and the last moments in particular, are suppose to be played out in a certain way – the idealist, peaceful, family gathered around his own bed, kumbaya moment of last breath and statements of love, befitting for a setting sun. I really have to come to terms with the fact that we may all have to stay fluid in the last weeks, days and even hours, whenever they arrive. Can we have the perfect ending? Perhaps, and I certainly won’t dismiss the possibility. But I must also allow that we might need to bring in a hospital bed, his last breath could occur in the middle of the night as I sleep next to him or that anything could interfere medically or physically to change the dynamics of the perfect story. We could linger in a state of dying for a long time, or find he has left us suddenly. Really, we just won’t know until we get there.

We have now clearly moved into a changed state of Dave’s health as he loses the ability to function independently. The dominoes of Dave’s health continue to fall in ever-so-slow motion as he described his journey last April. Sometimes it seems like the edge of one domino just barely pushes the next over, followed by a quick downing of the subsequent bricks on a rapid run. I don’t know which way the set up will take us or if something will get in the way to change how the remaining dominoes fall. But for now, at least there are dominoes still lined up.

"Teacherman" photographic montage of Dave summing up some of the elements of his life and work.Storyscape art by Nancy Gershman for Storybooks for Healing.

♥

Mancala was a favorite game from my childhood. I liked the simplicity, strategy and its link to games played by children around the world.

There’s a children’s game I used to play called Mancala. The long wooden board had six scooped-out cups on each player’s side and larger “home” pits on each end. It is based on a primitive game, variations played throughout the ages by children everywhere, in which the players fill and count their beans, stones or seeds into each cup. In the beginning you have one bean in the first cup, two in the second cup and so forth.  This simple game prepares you to think ahead (where will my last bean land?) and strategize (what can I place beans in the opponent’s way to mess up their count) and learn to count, add and subtract.

I have crept into a full time role as caregiver now. I have my little box of boxes, labeled morn, noon, eve, and bed. I count out Dave’s many pills and plop them into each cup sequentially like the mancala game. When my cell phone alarm rings out at 7:00 am, 3:30 pm and 11:30 pm I sit next to his side (after sitting him up) and we dump the pills into his hand for ingestion. We have prepared ahead because keeping up with what and when is less reliable now for us both.

In the last few weeks, and particularly in the most recent two, Dave’s physical need changes are remarkable. His body is stiffer, his reach less far. His strength is limited although better than he gives himself credit. The aluminum walker is a given, clip-clopping along the bathroom tile announcing his entry. His self care has become assisted care. In medical terms, he is a “fall risk” since he lost balance in the shower yesterday and nearly fell, even while sitting. From a time just a month ago when I continued working from my office (which shares a wall with the master shower so I hear the water running), to sitting in the bedroom, to standing in the bathroom, now I am at the shower with the door open making sure he is safe and clean.

Last week we “ordered” a bath aid to help. She called on Monday. No, I just ran him through the shower on Sunday. We’re good. I told Dave it felt like I was relinquishing my care to someone else and I wasn’t so sure I liked that, or wanted to. He said it felt like surrender. Surrender to illness. One more loss.

She called again on Thursday, as scheduled. Maybe, later, I said. This morning was unpredictable, please call again. She did. I declined. I’ve already helped him through the shower today. I know I feel like I provide the best care. He wouldn’t want someone else washing his skinny frail body, I think. Some things just can’t be scheduled. When do you want her to come over, I ask Dave. I don’t know, he answers predictably. No decision is often his favorite decision these days. On Friday, during the nurse’s visit, she’d changed the bath aide order to once a week. No, discontinue it. We won’t be ready next week I can tell. Maybe never. And, I’m OK with that.

There are dirty little secrets all primary caregivers deal with. Bathing, toileting, pills, dressing and feeding. The basic needs come and go or come and get progressively more dependent on the caregiver in varying degrees based on the illness. There may be catheters, oxygen, wound care, prosthetics and who knows what else. I suppose we all have our own tolerances of what we will, can, want and are capable to do, be it our loved one or not. I am thankful that I have just enough an introduction to medicine and caregiving experience to put all this in a clinical perspective. Without it I’m not sure what care tasks I could handle. I separate the wife from the caregiver in my daily activities with him. Without my little healthcare background, I wonder, could I take care of him as I do now? Perhaps being a mother is enough preparation for most women to transfer into the caregiver’s role. (Not necessarily to preclude men, but women are the primary caregivers numerically speaking.)

So far I have been able to protect his kids and Dave from having to step over those most intimate boundaries. I’m not sure if right or wrong but there have not been any complaints that I know of! Surely bath aids and other supporting hospice folks make a big difference in caregiving support levels for families. Yet, for me, at times, I feel all the “care” intrudes.

As a hospice respite volunteer I’ve made many calls when the caregiver just couldn’t decide when and if I should provide the requested time off. The exception was when this person had an obligation to their own doctor’s or other appointment. So, I’d call back a day or two later as suggested, usually with better results. I also had a patient that when I arrived the caregiver would still be trying to get ready, often in her robe. With each subsequent week she was less prepared when I arrived. Oh, I can see it all clearly now! I, too, find myself just unprepared even when I dictate the date and need. I’ve set and changed many appointments. I’ve cut short my outings and to-do list. I have a very short list of what is critical to me. Massage is one. Perhaps the only one! The other critical need is  Dave’s needs – Ensure, the tolerated food of the month and some personal care items. Everything else can usually wait.

I could have food delivered. I can put off most doctor appointments. (I stopped the PT appointments for my hip. Not only was I not getting enough progress before the next appointment, but I couldn’t sort through getting someone here.) I do change my mind about what is important or priority. I take a nap and then I’m better.

I am living in a gray area. I want company. I want to be alone. I want supporting care. I want to do it all myself. I want to get out and about. I want to stay home.  I want to get my own groceries. I want to have it delivered.  I want to get dressed. I want to lounge in my robe.

I never know which want will surface. It may change in a matter of minutes. I can have coverage for someone to stay with Dave only to find that I don’t want to go and/or often don’t have the energy to head out somewhere. I can get out in the world and wonder what I am doing in it. (My SCDS balance and hearing issue contribute to this angst as store fluorescent lights and overstimulating environments can have quite an affect on my being.) Someone comes by to visit and I suddenly have an urge to run an errand. Or then maybe not.

I don’t think straight all the time. I have to aim my focus at times to what is important. I don’t want to train others (as in, would the bath aid know to bring in the heater during shower so Dave doesn’t get cold?) I hate making a specific list for stuff I just know (as in, oleo means Gold-n-Soft tub margarine and cereal is that one granola I like without the raisins). I’ve been at the store for others. It is stressful for each participant. Sometimes it is easier to do it myself, even if it is not seemingly the best solution, or even if I feel like I can give up the task. I did not realize how stuck in my ways I’ve become accustomed to! I didn’t know how much work it is to replace me! Dave himself is so sure of my touch and care unfamiliar can be difficult for him, as well.

This is just no fun right now. Humor has waned. The seriousness of comfort and care has taken over our game of life. We are both tired, but must play one more time. Our lives go around in circles, like on the mancala board. We fill one hole, another empties. We take turns and the cups fill again. Maybe less, maybe more this time around. Whose turn is it? What day are we on? Mon. Tues. Wed. Morn. Noon. Eve. Bed. Count the beans. Count the pills. Keep going until all the beans arrive in one single home and the other cups are empty.

Game over. OK. Let’s play again.

♥

In December 1996, the Pacific Northwest, where I live, was hit by a huge ice storm. As “The Evergreen State” Washington is known for its beautiful tall forests of trees. At the time our hillside house backed up to several acres of undeveloped wooded property. It was semi-rural living close to town.

One night, as many people around here will remember, Mother Nature’s coldest rain clung to each of the naked branches of deciduous trees and greenery. Then it froze. Our entire community became an ice sculpture of itself as a gloss of translucent whiteness covered houses and lawns and streets, and of course, the trees. It was beautiful as only ice can be. But beneath the beauty and awe, danger waited. Ice is brittle, and heavy.

During one of those nights the tree branches began giving way to gravity. In the most stillest and darkest of night a sound of gunfire echoed through the forest behind us. Pow! Then another. Crack, it would reverberate. But this was not gunfire, it was the fall of branches. The ice was bringing down branch after branch falling tens of feet to the ground. It went on all night. I remember thinking that this is what it must sound like in a civilian war zone, where fear and sound and darkness keeps you wide-eyed all night. I worried for those who suffer military action PTSD as it could surely cause flashbacks. Nine year old Leah slept between us.

When daylight came there was light coming through the forest behind us. More light than ever, leaving us feeling vulnerable to the view to and from our distant neighbors that once was hidden. In the aftermath of storm there was a perfect thinning of the stand of trees that no trained forester could have created.

Once the danger passed, and the air cleared and the modern convenience of electricity was restored (We were out for 11 days during this storm!) it was evident that the fury of nature can also be the wisdom of nature. The following Spring the greenery that is Washington State flourished. It was given breathing room as the flora and fauna responded to new growth-promoting light. Mother Nature knows.

After the storm: Here the tree branch meets the ground in our backyard. What's left is an open wound, center top. I've already noticed small birds in a game of hide-and-seek among their new playground.

This past week we saw the ice cling to the branches again. In our more urban setting the damage was limited to a couple of big branches. When the ice melted and left the backyard naked again, I could see more lineal board feet of fence  than ever before. Light streams more brightly through the open air. Our neighborhood boundary greenbelts are thinned just like the forest behind our house had been 15 years ago.

This is a long way around to a very important awakening in this household. Wednesday’s snow storm turned to ice. The back yard was glistening with the familiar translucent whiteness. Beauty and danger. Electrical transformers and power lines fell along with our comfort of modern day conveniences under the brittle and heavy weight of ice. Only this time the fallout included life-giving oxygen for Dave.

We were without electricity for 28 hours.

* * * * *

In writing there is the what. In death there is the event. But it is the subsequent step of delving into so what that is important to understand and make meaning of any what. In our storm, the what is ice and fallen branches or trees and lack of electricity. The so what is seeing that we can’t really fool Mother Nature. She knows that sometimes we must clear out a few things in order to make other things flourish. Even if it is painful and difficult and there is loss.

This most recent storm brings along with it an analogy of new growth on this journey of living and dying. The storm was very harsh for Dave. He was without supporting oxygen for six hours. He was cold, weak and felt helpless. He had to work at breathing. I know now. There was a lot I couldn’t know while we were in the storm. I had my own perspective. We had been through storms before, without electricity before. It is survivable.

But Dave faced a perspective that said perhaps this wasn’t survivable. He has seen where he might draw a line in the sand to dare not cross. He never wants to go through a power outage again.

The so what result of the storm is that we have now began the most difficult end-of-life conversation I have been trying to approach without much headway. Dave knows, and I know he knows, that he will die. He isn’t ready to die he says. But now we acknowledge that just because he isn’t ready doesn’t mean it won’t happen.

After the storm, yesterday, we sat and talked. We dug deeply into life and death. I told him about the hour and a half I sat by the bedside trying to awaken him for his scheduled medicine. What was said. How I felt. What response or none response that I observed. He didn’t know.

Now we know. We both know that there are things I see and hear that he doesn’t. We know there are goings on and things he hears and see that I don’t. We understand that even if he is not ready to die, it can and will happen anyway.

He is facing his first fears of where this journey will eventually take him. Well, it is not a matter of confronting his fears actually, but talking aloud about them. Our conversation opened on the topic that if he talks about it then it becomes real and perhaps true. My response is that if he doesn’t talk about the end of his life, death is going to come regardless. Scary words.

There is much more to our conversation but for the outside world what is important, in my opinion, is that we are talking. And the question is not that broad inarticulate “how are you?”  or even the secondary “where are you at?” (I’ve tried those approaches before) or the “don’t you know you’re dying?” I’ve wanted to yell at him on occasion, but the question had to be aimed at “Are you perceiving/experiencing/aware of the same things I am?” The short answer is often “no.”

So,we have broken the ice on the subject of his death. Can you believe that? (I didn’t see this statement coming!) “Breaking the ice” paves way to growth. When we can talk about this time of life, then we can begin to talk to others. There is no secret lurking any longer. He can’t be perplexed as to why I called to have the nurse come earlier than her usual schedule. I don’t have to look at him quizzically when he wonders why Leah was not leaving the house, but going to go sleep on the couch. We may have to repeat ourselves because our level of consciousness and cognition for each other’s world is changing. I think we are fortunate our path is widening together before it splits in the necessary separate directions.

Dave and I are thinkers. We’ve built our marriage on friendship and discourse. It starts with intellectual questioning and observation. This gives us the opening doorway to explore the so what of feelings and understanding and communication. In my experience, once the thoughts are voiced aloud (for me, this voice is now through writing) then we can give the thoughts due attention. In our case, the conversation about death gives us the opportunity for mutual understanding, forgiveness, validation and expression of true love.

What started as an ice storm has become breaking the ice. Beyond our so what  will be our writer’s now what awaiting another chapter and the required attention duly noted. But I also find in this analogy of storms and trees and broken limbs is a bigger picture of life and death – nature’s circle. Dave is our old tree now vulnerable to wind and ice, even just falling over, or whatever nature has in store. Sometimes we can see the tree is likely to fall. Sometimes Mother Nature comes ravaging through taking out much in its path both young and old, quickly, unexpectedly. Regardless, in its wake is temporary destruction and wounds that will give way to healing scars, new light and even hope. The old tree may fall, but under its branches and decay life continues, and in fact, in nature, becomes the nourishment and the mulch for life yet to come.

♥

12" (or more) of fresh snow fell January 18 atop the 4" of the day before. Ice storm followed, with 28 hours of power outage. Dave was 6 hours without back-up oxygen available. Two large branches broke from a tree not seen here.

It’s almost noon, three days in the aftermath of snow, ice, major power outage, lack of back-up oxygen, wind and trees falling. I’m just getting my bearings. There is a fridge and both freezers to dump bad food and replenish. Leah’s watching TV with her dad. I called her to come spend the night after I couldn’t wake him for his evening pills. I wasn’t hysterical, but I couldn’t stop the flood of tears. I’m usually calm in the storm, but afterwards it all comes pouring out.  I had been exhibiting and feeling my calm for days. It was a scary moment, a-pull-up-a-chair-and-hold-hands-at-the-bedside-moment, and one I am sure will play out again. Change is definitely upon us. The world looks better today, only relatively speaking, but clearly our lives have shifted. The stress of the last few days has taken a toll along with the cancer.

There is much emotionally, logistically and physically to write and remember but not now. I have other pressing and necessary tasks for clean up and to get back in place at home and work.

But at this moment I have to relate an oddity. And it is about my glasses. Again! Last night as I was returning blankets and a handful of items downstairs, I went into the kitchen to prepare some food. The microwave clock needed setting after the outage. No glasses. I hate having to backtrack for those things. So I just fuzzily plugged some numbers in and thought I’d fix it later. Heated the food, went upstairs, looked for glasses. Nowhere. OK, get spare pair. Maybe I need my glasses to find my glasses (Mom will appreciate this thought!). Now, one day later I discover after multiple searches that the glasses I like, the replacement that looked just like the last pair that vanished into thin air, has apparently vanished into thin air. Not in the blankets, clothes, or along the path I last took. Not in pockets. Not in the places they shouldn’t have or should have been, either. Leah didn’t magically find them. I had worn the glasses just minutes before my trip downstairs.

It used to be that when I was in crisis or stress mode, car batteries drained and electrical things mischievously malfunctioned. I guess now I just lose my favorite glasses. Add “getting new glasses,” and gosh, I really like those same ones for comfort, to my  things to-do.

If anyone knows where these go, please contact me immediately!

♥

Nanette Griffin’s birthday. It is really much easier to remember the birthdays of people I went to elementary school with than the grandchildren’s. Why is it? Or do I just remember January birthdays because my own slides through, usually quietly, after the new year. (I also remember Ruthie Priester, Elvis and Richard Nixon. Once we get to Martin Luther King, I suppose, much like New Year resolutions, the dates drop off!) I was noticeably more honored on my birthday this year than in the past with the company of friends and family, phone calls, small gifts, plus dinner and lemon meringue pie. It is nice to be loved.

I am still in New Year assessment mode. I think I have to add a new date to January. Dave’s last day working and the anniversary of his reaction to the chemo, Tarceva. January 20, 2011 was a changing day.

Soon afterwards, he was placed on home health care, then almost immediately into hospice service. Neither of us thought he would see 2012, much less summer. In some ways Dave maintains better today than in those first couple of months. Or maybe it was the panic of anticipated loss – fear, anxiety, confusion, change that I saw most.

Our assigned nurse Jeana came on Wednesday after not having seen Dave for about three weeks. Holiday and other scheduling sent other nurses to us. Relatively speaking he was doing better than her last visit – better lung sounds, more alert, textbook vitals. So from the discussion about how things can change… things do change. Sometimes up and sometimes down. And as if on cue, in the past couple of days we’ve seen a downturn with foot swelling, less alertness and Dave need more physical assistance.

So I am just trying to go with the flow. The most important flow is mental attitude I think. And sleep. Maybe sleep is the critical component I need for a good mental attitude. I am tired. I nap often. But it’s not the “I’m depressed and can’t face the world” avoidance sleep. It’s the “I can’t think/concentrate and when will I be refreshed and energized?” hopeful sleep.

I am trying to go with the flow about pain, too. Mine and Dave’s. Clearly physical pain is distracting and my hip (and SCDS) continues to play into my daily activities. I have to rest my body on this count, too. When I exercised and did all the assigned physical therapy routine last week, I set off a couple of days of pain and recovery. OK, not the right routine yet. This doesn’t hurt while I work out, so how do I know I’m creating a new stress? Pain is lessened by sleep. Maybe I’ll wake up more refreshed. Quit trying so hard, Joan. Go with the flow.

Dave’s pain level is well managed when he takes all his pills on time. This is one of the new challenges. As we sleep odd hours, we miss the timings of his meds. A couple of weeks ago I printed up his med list and schedule just to keep it all straight. Even now he doses out his own pills. But earlier this week he slept through the night shift (we’re on the old school nursing shifts – 7am , 3pm, and 11pm) and awoke with pain by morning. Now we have been setting my cell phone alarm, and I am making a more conscious effort to see that he remembers his pills each and every time.

Going with the flow… As I write I can tell that my concentration is just off. I spend a lot of time accepting that I don’t need high expectations. What counts is taking care of us both; even if some days that translates simply to eating and sleeping. I can do the minimum and feel accomplished, I have to force myself to think and accept. I find that I am sitting here in report mode, trying to capture the feelings and thoughts and activities of this moment before they escape into oblivion, dissipated.

I want to share a story that is small, but indicative of Dave and me in the now. I picked up the mail and there was a letter for Dave, from his high school class of ‘57. He sat at the edge of the bed under the lamplight reading the notice of his upcoming 55th class reunion. When he finished he handed it to me. I think I asked if it was a reunion notice. “Keep this,” he said as he handed over the paper. “For what?” I asked. I had actually been spending the last two days rearranging and picking away at the piles in my office in hope of feeling better prepared for taxes, work and some new feng shui energy. Not work-day productive in the short run, but perhaps for the long term. The letter was part of the mail purge. “You know I’ll feel obligated to keep this forever” (until after you die, I actually thought but didn’t say). I was envisioning which new pile to sort this into. “When is it, the reunion?” he asked me. I looked down. October. 2012. In Tulsa. God, that seems like an eternity from now. “I’m not going to go,” he said.

Of course he’s not going to go! He hasn’t attended a single reunion in all the years since graduation. Why would he now? He hasn’t set foot on a plane in dozens of years, much less traveled out of town (other than medical) since his stroke – in 1998. Really? You aren’t going? I didn’t know whether to laugh or cry or state the obvious. I chuckle now. I told him I didn’t need to keep the letter. His silence told me it was for me to handle. However, I did send back the RSVP and made note to the committee that he is ill. He has a website, I included. I doubt he’s ever even RSVPed for past reunions.

But Dave’s mind is still thinking in terms of life, of living, of future. Occasionally, he mentions he could get out the computer and maybe go through his e-mail. He hasn’t been downstairs since April, 2011. His mind is incredibly strong, stubborn if you will. His mind, over matter of disease, is in play. Our minds, through this journey – whether facing life or death – is what keeps us up, living and moving forward, if only a few inches at a time.

I can, fortunately, reshape each day for the better as I think and write and live it. The stories I keep within and share throughout become my life in whatever way I tell them.

Dave told Jeana that he is still interested in the world (in spite of declining health). He is “not ready to go yet.” I noted that in some ways he is probably “better” now than he was last March. Whereas I could feel the inevitable pull from death then I am so unclear now. I can’t make any predictions about how and when, mainly because I only think about today or tomorrow – not next week hardly, much less next month.

His interest waxes and wanes for football, politics, even his lifetime occupation for history, and the college. One day he cares about it all, the next is focused on getting through the day, literally.

My world also narrows to making sure he has clean pajamas (laundry has taken on a whole new meaning, just like making sure baby’s clothes are clean, sanitized, and healthy in all ways), and that each meal replacement drink is cold and frothy. I see to it that he can reach the TV remote, his medicines are taken, I am nearby to help him stand, or lift his legs back in bed, or rub the pain from his back. I focus on the single-minded caregiver role, running with both his and my lives, they are so inextricably linked, even if separate. When politics matter for him, then for me, too. If he wants to keep the reunion letter, then perhaps it is important to keep. Maybe, if just for now.

Or it is a time to realize some things must be let go. A gentle reminder. For us both.

So I go with the flow. And now when I write, I can find some moments of making the stream (of consciousness) flow with gravity, around the rocks, swirls and eddies, dancing the way to the end. What end? Someday the stream will meet the ocean where it will open up to a strange new world. For us both.

♥

I understand that confusion is a rather normal symptom at the end of life. However, I usually find this attributed to the patient more than the caregiver. Dave has shown  bits of confusion, but I am beginning to think I have more than him!

I am confused. I am confused about Dave’s state of health. I confused about how to take care of my own self, even in knowing what I should do. I am confused by how grief is so distracting. I am conflicted about all the in-betweens.

Dave changes from day to day. One moment I am seeing and helping a very ill man. Then next thing I’ll know I feel like we will be here in this state of being for a long time to come. He is coherent, thinking, reading the paper, even working on the crossword puzzle. Granted, I haven’t seen a finished puzzle in months but the fact that he wants to engage his mind in this activity is amazing. So the ups and downs of daily health are very confusing. It’s like I just don’t know how I’m supposed to feel. Hmm. I feel like Charlie Brown with Lucy pulling the football out from under me. I set my thoughts on either grief or settling into getting comfortable with how it is at the moment –it doesn’t matter which in some ways– only to have my emotions changed to the other state. Up and down. Trust and hope. The ball jerked out from under me. I fall for it every time. Sometimes the coherent Dave and weak Dave occur within the same day; other times it may be over a few days. There is no rhyme, nor rhythm, perhaps not even reason to how he will be operating in our world today. (Are there two worlds now that he straddles?)

I am frustrated that I have lost my personal independence in the caregiver role. Until last month I could pretty much run errands or head out for a couple of hours at most any time of the day. First, it was a matter of not leaving him in the evening. That hasn’t been a big problem as I don’t go too many places at night, and there are lots of people who can be here at that time. It was in November that I had a speaking engagement and I realized Dave wanted company during that time.

Next it was my anxiety over being gone much longer than 1.5 hours. Was it me or him who needed the reassurance? Maybe both. I would only go out during his known sleeping time. Then I started asking if he wanted company. As the answer became “yes” more often I noted that he is the one in need. Now I find myself suggesting I go out and he doesn’t offer the “I’ll be OK for a while” that I want to hear. We do need someone here now. That began in early December. That’s my job to make the schedule work.

Now, I have to acknowledge and resign myself that I must call on someone to help me take care of Dave. It confuses my sense of independence. Why is it so hard? For one, I don’t have any spontaneity. As a coping mechanism until recently I could go shop, for groceries, office supplies, or leave on a whim of an idea. It didn’t matter. I just ran out for a while. I could find a change of pace and scenery anytime. I might go work out with a friend, or look forward to my Sunday walk for an hour. There was my weekly strength exercise. I was getting used to small grocery runs for convenient, perishable foods that I like, especially since Dave doesn’t eat what I do now.  Or, I could grab a fast food run at dinner time when I had a craving or didn’t want to cook. Even the quick runs are gone now. No changing my mind about what to eat. My habits had included at least three days a week for my combined social / health time, plus some shopping, grocery, self-care and household errands randomly attended.

Second, now I have to think it through. What’s important? And what is important enough for me to interrupt another person’s schedule for mine? This is the most difficult in asking. Then I realized that with all the family people I can call most are not available in the day time because they work. I am learning. I am making some calls for help. I am taking advantage of when people are already here for visiting to step out briefly based on the comfort of Dave’s needs at the moment.

This week I’ll decide what I need when and will request a hospice volunteer for a regular time. Weird, as a previous volunteer myself I know how awkward it can feel for the family to call on a “stranger.” Here I am on the other side reluctant to call because I want both to utilize the time in an important way and I haven’t known how Dave will respond to someone new coming in. It is an interesting moment of need from this perspective. I know all the volunteers are amazing and respectful, but I still have a bit of trepidation in calling.

But for me, even with solutions at hand, i recognize that I have lost my spontaneity and independence. It hurts. I have to plan. I sometimes have to have a back-up. I don’t want to depend on any one person because there may be much more need later. (Or, not. Who knows?) How do you call someone to come over at 8 am on a Sunday morning? I just don’t like asking, because I don’t think I’d want to do it. Often the plan involves more than me and the effort seems like more trouble than it’s worth.

I know that there are a boatload of folks willing to come over for the asking. In fact, I know this would be a great thing for them. Yet, I just don’t like making the calls even when it means I am taking care of myself so I can take care of Dave.

So this brings me to the exhaustion of grief and being a caregiver. The ups and downs. I spend so much time writing and thinking about some of this I wonder about myself. Is it normal? I know it is: The lack of concentration, the difficulty in asking for help, the ups and downs of what I see and experience in Dave’s health. Watching and waiting and questions of worthiness are all normal. The frustration at not having my own life is normal. The wishing it would end is normal. The wishing I didn’t have to endure this and Dave didn’t have to endure this is normal

Yet, I wouldn’t have it any other way. I am privileged to witness and share in this stage of Dave’s life. This past year has given us some of the closest moments we’ve journeyed together in our marriage. There is continued learning and laughter and tears. I can’t fathom him not being next to me. And that, too, is very confusing.

♥

(One approach to writing is using the what? so what? and now what? questions to lead through to a conclusion. So I gave myself a prompt to sort through the discomfort of how I feel today and what I can do about it.*)

The hardest part of life for me right now is….

• Trusting myself. Self doubt loves to creep in when I feel confused about what I can accomplish, or have “should’s” in my life, or just don’t live up to my own to-do list.

• Choosing priorities. Business, grief, caregiver, me. This relates to all the roles and expectations I name for myself.

• Being patient. I want to “stay present” but I also want to plan and implement. See priorities, above!

• Being patient. There are some things I can’t control, therefore they have their own timetable – that would be everything outside of me! I can control only my response.

• Being patient. With my own health concerns. I have to work my way back a little bit at a time. This may slow me, but I don’t have to let it stop me.

• Fear of being alone. Not being alone, but talking to myself all the time. (Wow. This is my unexpected thought from writing.) Isn’t writing talking to myself all the time? That’s not a difficulty, nor a fear. Not talking to myself, but being alone. Being alone. In some ways I am already alone, and have a taste of widowhood – the ultimate abandonment from a partner. Yet I am not alone because Dave is very much with me in his present state. However, the very real threat of his leaving has been going on for over a year now. (This is where all the “Dave hasn’t died yet” derives from.)  He is willing and able to express his love, support, and… provide for me. Dave has been my protector and provider for decades now. Soon I will be responsible for all of this myself. My safety net will be gone. I suppose I am already in this position of responsibility since our primary income has transitioned to retirement funds.

My feet are in two worlds.

I believe that one of the biggest, hairiest, most important insights to understand the meaning of loss is to discover what qualities or characteristics the loved one’s relationship provided. (This is the goal of the section Grief Reflection in the  Storybooks for Healing program.) Even though I have contributed substantially to our finances and provisions over the years, Dave has always been the primary breadwinner. I have counted on him in this capacity through both lean times and flush times. Dave, of course, means far more than the dollar and cents. But I am considering how his life’s work represents the backbone for our security and financial stability.

I’ve hit upon this role of Dave before as protector and provider, but did not apply it to me. His death means I will become my own long-term provider financially and emotionally. I’ve been dancing around this in all sorts of ways over the past year. I’ve felt it in my anxiety over business goals, how to spend my time, and fussing about my own health and worrying about how to address logistics if “something” happens to me.

Being alone isn’t really my fear. I am comfortable in my own skin. It’s thinking about providing for me in all the ways Dave has fulfilled in my life. It’s wondering if I can provide substantially for myself once again and presumably for decades to come. After all, I haven’t financially supported myself alone since 1983. That’s a long while. It’s been us, rather than me. The world is different. I am, too.  Perhaps I am even more capable when I think about it! I can at least hope that the maturity of wisdom can override the loss of youthful strength.

So what do I do about these things?

I recognize my fears and make choices to act. Hoorah for writing to help me identify my feelings and be constructive! I play to my abilities: organization, planning, implementing. I give myself credit for being the expert in my own life for what is right for me. I remind myself to trust that I am and will be OK.  I give myself permission to be patient because I am in a very stable environment, and because we have already planned for this part of life.

Now what?

I must breathe. I do what is possible physically and mentally given the circumstances of our health and challenges. One day, one hour, one minute at a time.  I can be happy in knowing that our and my immediate future is safe and secure. I have plenty of time and opportunity to continue to build both my business and my life upon what is already established.

I am reminded today that we are our stories in life:  The stories we tell ourselves each day; the stories of relationships; the stories of our future. The ability to tell stories is our humanness.

We manifest our stories. It doesn’t matter whether the story is grief and loss, or love and care. We have the opportunity to change our stories, bit by bit until grief becomes understandable, until pain becomes wellness, until we trust ourselves to choose a positive conclusion. As authors, I like that we can choose a happy ending, too.

The New Year touches off an exaggeration of facing both my accomplishments and expectations, and even fears. I get a double dose of this thinking as I approach my birthday in a couple of days – the personal mile-marker for another year of life. When I don’t like the thoughts I guess it is up to me to change the direction of the story. I’ll rewrite the plot. Life already adds the twist and turns that makes the reading interesting.

♥

* Writing helps me learn what I think. It can help you, too! You are invited to start you own free online journal for writing though grief with the Storybooks for Healing community. I hope to see you there.

]]> http://www.griefreflection.com/hardest-part-of-life/feed/ 0 http://www.griefreflection.com/hardest-part-of-life/ http://feedproxy.google.com/~r/GriefReflection/~3/NRLg8rE1V9U/ http://www.griefreflection.com/still-here/#comments Sat, 31 Dec 2011 21:58:22 +0000 joan http://www.griefreflection.com/?p=1967 Continue reading →]]> Saturday December 31, 2011

Yes, of course, it’s the last day of 2011. Looking backward, looking forward. We all do this; it’s predictable and the topic can be anticipated in any blog or journal, public and private.

I have been fighting myself all week. Depressed? Exhausted? Post holiday again? My motivation and energy extend just to me and Dave, the bare minimum of care and feeding of us both. And this morning… it is the last day of 2011, ready or not. That means tomorrow I face a new year, a new beginning, right?

Actually, no. Because Dave hasn’t died yet.

Dave hasn’t died yet. This is the big end-of- year conclusion that sets up what I tell myself is to come for 2012. This was unpredicted a year ago. In fact, I expected to be a widow by this time. I expected to be focused on my business and forging forward into accepting my changed life and turning loss into meaningful experience. Life and death is simply not so tidy and predictable. In fact, I have continued to think and plan my life accordingly, thus setting me up for unrealistic milestones I think I should have reached by now.

Dave hasn’t died yet. Obviously there are lessons of life, love, grief, storytelling and caregiving to come. Life is what happens while we are making plans, you know. I am still in the midst of life – Dave’s life – our lives. But sometimes it seems my life is the smallest piece of this pie I’ve been dished.

It’s a scary thought for any caregiver to want or wish for their loved one to not be around. I can’t even say dead, because that is not what I really want; it is to not be in this role, in this scenario. I’d love to keep Dave around for many more years to support, encourage and care for me.

The shift from me, being “Joan” in all my definitions for myself until now, to “caregiver” is one that I didn’t understand a year ago, even as we drove to daily radiation treatments December, 2010. Now the role looks big and important. It takes a disproportionate amount of time and emotion. Caregiving is plural. I even distance myself from the term as I am now a Caregiver generically speaking rather than Joan, the caregiver. It is a transitional idea for me, a temporary position bestowed by circumstances (as compared to those whose profession is as a caregiver).

There was a moment that I first identified myself as a caregiver when I began to relate to the emotions and activities I’d read about from others in this role. It wasn’t immediate with the diagnosis of Dave’s cancer in October 2010 (I now have to add the year onto the date), nor even with his transfer into hospice service last February. I didn’t become his “caregiver” until I saw that he was dependent on my support for his sustenance. I recognized the change in my status  when I became his legs to go up and down the stairs for his meals on a regular basis last Spring. Yet, all along this journey this is what I do purely out of love and care for Dave and in return for the love and care he has shown me throughout the years.

It is hard to admit aloud, that I am ready to live my “new normal” without him. Perhaps it is a bit of a self-preservation response. I know it is not an unheard of, and is silently wished for, by a large percentage of family caregivers. It is even comprehensible when pain and suffering are present.  This time can be very painful not to mention tiring, emotionally and physically. It is not that I want Dave dead. It is that I want to get control of what I can control once again. I want to see him in his wholeness of the man I’ve known for a long time.  I mourn him in stages as he disappears before my eyes. I know I can’t have life as it was before, and I don’t like the way we live now.

Since Christmas we have both slept – a lot! We have been trying to revive our energy. Mine is starting to refill, albeit more slowly than I want. His is becoming depleted. I see subtle losses. A thought dissipates mid-sentence. His eyes close unknowing to him.  He struggles to move his body. He depends on me a little more to help him move about.

Lest you or I really think that I want him dead, I did have a moment of fear for this impending reality. On Wednesday, in complete exhaustion, Dave was sitting up. The position change is needed to reduce the pressure wounds on his rear. (That’s a story of its own.) I sat by his side, rubbing his back, easing the soreness of his ribs pressed by the tumor. He was half asleep, existing only in the moment. I could see and feel each ligament of his neck.  Suddenly, he fell into my arms, completely surrendering his weight and his exhaustion for me to hold. I could feel the true vulnerability of his life for the first time during this ordeal. “Oh yeah,” surprised by my own thought. “This life as we know is going to end before I am ready.” I was startled by the depth of my intuition. I will never be ready.

His body is failing. There is a relative rise and fall each day like his breath changes from shallow to deep. We can’t predict how much time remains. Only that what is, is.

As I look back even briefly, it appears each week has unfolded in the journal like the Boy Who Cried Wolf. Who could think dying could be so drawn out? Who could know someone would live so well with dying? How many times can one person go around the roller coaster experiencing the same ups and downs and loops?

I know I have more to be thankful for than not as we enter a new year, 2012, together tonight. A year ago I could not have anticipated his joining me for the coming turn of this calendar year. I don’t need to review the last year, as most of it is written down in detail I also could not have predicted. I have carved emotions deeper into my being, earning the new creases I see appear before me in the mirror. Some from smiles, some from tears. All from love.

Half of the 25 attendees at the Christmas Eve family gathering. Back left (standing): Dylan, Bailey, Dedi. (sitting) Kenny, Carson, Ashana, Lexi, Leah, Dana, Dave. Front (sitting) Denise, Dawn and (standing) David.

♥

Two days before Christmas. I have all sorts of observational minutiae ping-ponging through my head about life, holidays and Dave. I’ve been writing but not posting because I can’t seem to get anything finished. My feelings are more complex now and more difficult to articulate. I’m sure it is all exacerbated by the holiday ____. (I’ll stop at “holiday” because there are too many roads to follow on this thought.)

I have a lot of empty trails behind me this week. I finally mustered up the energy to try to shop. I hate to keep alluding to the SCDS but it really is a part of my everyday world to cope. Stores are stimulating enough this time of year with sounds of overhead music, toys and demos; the aisles are full of stuff, great gifts, and end caps saying buy me; and if it is past 11:30 am add traffic, people and more store clerks and … Oh, too much. Even with a list I found I could only seek out a single item at a time. After a couple of hours, I was done. I worried about leaving Dave. I had no efficiency. Plus, I needed groceries.  This tangible gift-giving is just not going to happen this year. It saddens me.

The tradition that surrounds our stockings is probably the essence of the holiday for Dave, Leah, and me.

I have hung our three stockings –Dad, Mom, and Leah–  in the bedroom. I have the minimum of tradition covered for Christmas Eve. This will have to suffice. Even Leah has fallen ill this week. An almost holiday tradition for her, as she has had her fair share of the “week before” activity-stopping colds over the years. I’m thinking we’ll be piled up in bed watching a good, long movie in the near future! (Muppet Christmas again? That works at any age.)

We will hold a pot luck this weekend with all the kids and extended family. Yum, a Mexican Fiesta as a nod to my Tex-Mex roots. I am surprised to hear how many people here in the Northwest do the same. It won’t be tamales, but we’ll have a delicious taco and fajita bar, easy to pull together.

Along with the inner ear challenge of disequilibrium and autophony, I have been limping around with a bad hip for the last month. I suspect the constant stair climb has not helped. I’d have a morning that was fine, but then “tweak” it in a painful way in the afternoon. Or maybe I’d wake up limping only to find that walking around helped. Yesterday, I finally decided a cortisone intervention was needed, just to break the cycle. I notice Dave has been spending too much time worried about me and I have spent too much time chasing pain. It was one of those I-didn’t- know-how-bad- I-felt-until-it-was-fixed moment. What a relief to get the injection.

For each of us, staying ahead of all the pain is the goal: emotional, mental, physical. After a week of dragging behind, this morning I am optimistic. I can look forward to the day, weekend and even next week again rather than trying to focus on today, the next few hours or even minutes.

How is Dave? This is such a tough answer. About mid-week he awoke from an afternoon nap and said, “I feel better.” Boom. And he looked better. The swelling in his foot disappeared.  He had been sniffling for a few days and that stopped. Could he have had a bit of a cold? Or was it that the increased pain med and oxygen finally kicked in? Are we back to being out ahead of some of the symptoms again? Ahead of the pain?

The big question to me is whether I was pessimistically seeing changes this past week. I do know his overall health trend is downward; the serpentine ups and downs submerging into the depths.  It really depends on what moment you walk into his day. Alert. Sleeping. Clarity. Mid-thought conversations. Stable and independent. Weak and needing assist. This process is very fluid right now. Visitors also exchange with me a mixed glance of knowing (sadness, emptiness, loss?) that there is a change. I can see that this time is as confusing to them as to me. I have no answers. I have nothing to add in words. We all wait and watch together. And then we don’t. Do we? How much can we/should we read between the lines?

Dave’s sense of time is notably off. It is marked by pill talking more than the calendar. I almost wonder if his suspension in time is part of his longevity against cancer. I once read that all mammals have about the same average number of heartbeats in a lifespan. So the smaller animal with a faster heartbeat does not live as many years as a human with a slower heartbeat. Hmm, if I extrapolate that to people, then athletes with a slower resting heart rate theoretically have a longer life than strung-out high heart rate humans. Obviously there are a huge number of factors to change the equation, but all things being equal… Anyway, Dave has always seemed to have a slow methodical tempo to life. I wonder if this time, too, plays into his mental and physical capacity for passing the projected timeline with calmness. Observational minutiae on my mind.

I am going “into the moment” now. Now what gets done is just that. I wish all my friends, family and blog followers a beautiful and peaceful weekend. Be sure to take a minute for yourself to honor and do what helps you through your grief, loss and memories. I know I will.

♥

We started a private Facebook page for the extended family to stay in touch and for me to post some updates about Dave’s health. It’s nice because most of us use Facebook including the grandchildren. We don’t even have to be “friends” to send messages this way!

It’s a funny place to share at times. But here I can provide one message so everyone accesses the same message. Responds are also shared equally. Social media has changed the way people communicate.

Here is what has transpired this week (post to our Facebook group on Thursday):

Checking in about Dad/Grandpa/Dave’s health… Yesterday the nurse came for her scheduled visit. She noted that there are less sounds heard in parts of his left lung. The right is the same diminished sounds as he’s had all along; the left side is new. There is still good air flow in the upper and lower lobes, difference noted particularly on the posterior side.

What does this means? Changes are coming. She took the opportunity to remind us that this is a progressing illness. He will not survive this cancer. I think I for one get lulled into a sense of the new normal, keeping the outcome at arm’s length. Jeana brought us back to our reality.

Her caution is that we don’t know how this story will play out. He may continue a very slow decline until sleep and a comatose state occurs over a month or two (or more?), or he may take a sudden turn and there be a rapid decline with loss of life in as short as a week. We don’t know and there are not reliable predictors.

I’ve held a belief that when we have to call the nurse for increased visits and a need for the bath aid, etc then I’d have a warning for our presumed vigilance. She offered that we might call in all sorts of requests for support and then his body change so quickly that we require the higher level of support for only a week. Again, this predictor is a false sense of security. I know I’ve witnessed this rapid change in patients several times during my service as a hospice volunteer.

I do know that I see a gray area between Dave’s awake and asleep. He’s thinking and quiet; or, more disturbingly, not thinking at times. He has the strongest will of any person I’ve known. He requested two full waffles for dinner this week (rather than 1-1/2), trying to add in precious calories. I know an extra 100 calories at best aren’t going to help. Most of the time his mind is clear and on point when awake; often better than mine! He is still doing most self care, but I am needing to assist him more, now even with some moving around. His frailty is showing.

There are noticeable physical and mental changes. It’s as important for you to get a reality check as it is for me. I’m not suggesting to run-here-and-sit-by-the-bedside. I’m just sharing the observations and conversation given to us.

As usual, call or drop by as you desire.

3:30 pm

It’s late in the afternoon, an unusual time for me to be writing. I have just returned from walking a few houses down to the stand of mailboxes to check for pills and packages. The air is cool. The blue sky hides the fact it is a week before Christmas in the Northwest. It even looks like the neighbors have been mowing, I noted. I find four more bottles of meds for Dave’s week. Yes, the holiday package from mom arrived. I hope I can muster time for getting a few things for Leah this week. I hope she brings us her Charlie Brown Christmas tree for the bedroom mantle. It seems appropriate.

I took a long, hard nap this afternoon. I’ve got a cup of coffee; half- decaf so I won’t be awake all night. Dave is sleeping, finally. He’s had a couple of days of discomfort. Not pain so much, just not getting comfortable.

It might as well be a new day. I’m writing; he’s sleeping. I wrote all morning without a conclusion. I’m trying to sort through the angst of Christmas and December. I started that reflection a couple of weeks ago. It may need another year to formulate. I am, after all, still living with Dave this Christmas. Perhaps I can only anticipate the emptiness that death might bring. Maybe next year I’ll rewrite this topic from a different perspective.

He is tossing and turning between sleep. His form of tossing and turning is actually sitting up. We’ve been propping more pillows to behave like a hospital bed, lifting his feet or head, trying to change the angle for alleviating the pressure points, and entice his blood to circulate to every extremity. His right foot is constantly swollen now, sometimes warm, often cool and purplish. We are too stubborn, so far, to give up the sense of our room (normalcy) and the comfy tempur-pedic bed. I wonder if we will. I think the bed is a symbol of dignity.

I am afraid that we have entered into a new phase of illness.

Everything requires more energy now. Energy, as in effort. Getting up. Getting to the toilet. He has asked for my help. Getting his legs in bed and propped onto the pillows. Untangling from the blankets. It’s hot, he sweats. He’s cold. There is no fat, nor much muscle, to keep him warm. Can I find his robe? He’ll wear it when he sits. Can I rub his back some more? Aahh. He is a stringy mass of sinew and bones. There is not much to rub. I am here. Here I am.

Grandma Denise introduces Sayler to her Great Grandpa Dave.

New life appeared last night. She came in a bundle of purple velvet, Hello Kitty socks and pastel hearts. Two-and-a-half months old Sayler met her Great Grandpa, brought by proud grandparents Denise and Chuck. Of course I was happy to hold her! I even sneaked in a song and gentle bouncing to “trot to town.” She is beautiful and clearly adored. She is like a new, shiny penny as Dave would say. New life, he repeated to me today. We both know the stark contrast. It doesn’t have to be said.

I think I have given myself the permission needed to do only the bare necessities. Take care of myself. Take care of Dave. Food. Shelter. People. I, too, require more energy for everything I do. I am in maintenance mode and that’s finally OK. I remember that when I worked in an office really very little is accomplished in the last couple of weeks of December anyway. Most  “it” doesn’t matter too much right now. I have my priority. I have lessened the demands on myself. This is easy to say, more difficult to actually believe and practice. I am feeling peaceful at least for the moment.

I try not to think about the changes. I try not to consider what major dates are upon us. Christmas. New Year’s. My Birthday. I don’t want any suffering to be strung out over time. I want to get past all these milestones. I wonder what keeps him going. What is important to him? Is there any unfinished business, so to speak? Can anyone ever be ready? What makes him peaceful for the moment?

We increased his oxygen today. He added another long acting pain pill to his daily repertoire. We are taking each day as it comes the best we know how.

♥

Aaaaarhg. I’d love to let out a good long scream. Maybe that would help in some way.

I’ve had a million narratives in my mind this morning with my two cups of coffee. I really must go back to my half-decaf blend. I think too much. (However, it is nice to be a brilliant poet in those moments!)

It’s been a tough week. I have just hit overload of emotions. I feel like I can handle any one major obstacle at any given time, but that is not my current challenge. I have business, home, and health all vying for attention. I throw expectations and goals out in front of me to follow. If I don’t reach what I shoot for I feel like I let myself down. I know all too well that I have to put the oxygen mask on me first in order to take care of anyone or anything else, and I’d like to believe I do. Maybe I don’t. It was too much to call for a massage appointment yesterday.

That’s the problem. My health is changing. I wish I could get angry I said to my friend Gina the other day. You’d be proud of me… I am getting mad. But to what end? To make me scream? OK. I’ve screamed. Now what? “Acceptance” I’ve been reading on the SCDS support Facebook page. Illness changes how we operate in the world. Limitations. The conversations of disability, of how no one gets it, of the weird changing symptoms. At times it is very laughable. Mostly it is painful and frustrating. Even scary. Who else could know how noisy our bodies are inside better than my new BFFs on Facebook? Or that the sound of laughter or the voice on a telephone can cause instant nausea or a head spinning session? How surreal my own voice sounds, kazoo-like and scratchy, often too loud for even me. Ah, here I am in the club nobody wants to join. Like widowhood, or child loss, or divorce, or cancer. Yet, thank goodness we can find someone who goes before us on these strange journeys. Whew. I am not alone.

I have to schedule a nap every day. Even twice on some days that I get up and get busy early in the day. This is the only coping mechanism that works against the conflict of my inner ears, vision and brain. It eases the headache of too much incoming information. It lets me reset the button for getting through life, and the rest of the day. Ironically we tell people to come over mid-day to visit. It’s Dave’s best time. I am learning that if visitations interfere with my rest period I pay the price. Then Dave will pay in turn, because of  the way I feel. We have to reset this button, too. There are adjustments along the continuum of illness. Keep the oxygen flowing – literally for Dave; figuratively for me.

I resent the time and energy “the hole in my head” (it really is descriptive and becoming an endearing term to me) demands.  I hate that I have to read and write, then re-read and write several times over to make sure I get each passage right. I take notes on notes to keep it straight. I can’t understand why one day is good and the next is not. One day I can exercise the next I don’t have the stamina. Living is a very conscious effort. No autopilot allowed.

Yet, I am still very fortunate. I know it. I have healthcare. I have supporting friends and family. I have answers. I have the strength to say yes and no. I have fewer symptoms and problems than others with SCDS. I have work. I have the choice to take a nap. I have a few more moments with Dave. But I am still PO’ed.

I read about new research on brain and memory lapses. Apparently, when we literally walk through the doorway to go to another room we hit an “event boundary” of our compartmentalized minds. So “what am I doing here?” once you’ve gone into another room can now be explained. It doesn’t happen within the same room. You must walk through the doorway. Isn’t that comforting!

As much as I'd rather be inserting a photo of Rodin's The Thinker, this sardonic illustration more accurately portrays my dismal perspective of Dave at the edge of the bed.

This morning, after an hour of brain babble and narratives and pre-writing, I brought Dave his glass of breakfast Ensure. He was already sitting on the edge of the bed, in the dark, waking up. I turned on the bathroom light to create the false dawning of the day minutes before the sunlight would enter the room. He holds his head in his hand more than he knows. His silhouette is reminiscent of The Thinker, only with the body of aged man, fragile and tired from years of intellectual discourse. He is in his thinking posture. He is so thin, I always see. I make a mental assessment; his foot is swollen again.

“Here’s your juice,” I said. Last night I realized the smell of chocolate Ensure is becoming very unpalatable to me. Another round of pills; this must be a new day.

I sat in the rocking chair facing the bed. A notable calmness came over me. I had crossed the threshold into our bedroom of Dave’s world. I felt a disappearance of the angst and worries and pacing I was doing moments before, one floor below. I shed my cloak of self at the doorway. I remembered the same feeling I have when stepping into the lives of others as a hospice volunteer. It is a privilege to be in the moment. To be with someone who is still living, although I see him as dying. I am outside myself.

I can only be in the moment. It is how I have to cope right now. Sometimes only five minutes at a time. Five minutes of work. Five minutes of rest. Five minutes of feeling good. What can get done will be.

My health is changing. My life is changing. For just today I am.

Acceptance.

♥

I have just a few minutes this morning before I get on a scheduled business call; a few minutes to dump into perspective all sorts of moments from the last couple of weeks.

Dave is changing. Until I could admit that the many little snippets of information coming to me equals change, I have just been gathering data bits for my brain file. There is nothing remarkable about his vital signs, or most recent nurse’s visit. Yet, there is a change.

And, there is not a change. Dave is still Dave: clarity, talking, thinking. Being here.

Since Thanksgiving, I can see more now with sudden hindsight: A couple of conversations that are not logical. Sleeping more. Fading out, with eyes not quite closed. Awakening with a startle.  Involuntary twitches emanate from his arms. His body is slowing down. We talk less, touch more. Lots of back rubs. And, well, last night his right foot became swollen. Change in his circulation.

My tears and anxiety are growing again. I am becoming restless with lack of control. I don’t get a choice. His death is inevitable, but not necessarily or immediately imminent. (How long is imminent?) I’ve prepared, but I’m not ready.

Like childbirth – prepared, but not ready. I remember standing in the hospital elevator on the way down to the birthing room, Dave by my side. A wave of contractions overtook my body. I reached out to steady myself against the moving wall clutching Dave’s arm. Breathe. No choice. This baby was on its way, ready or not! Even with all the preparations, I could feel that I was merely a spectator and a vehicle. Primal. Nature was in control. Leah arrived in this world less than an hour later.

His changes are accumulative. And this is the first tipping point away from us in recent months, I’m afraid. Nature is in control.

I’ve tried to keep the changes at arm’s length. How do you not be an alarmist but keep everyone informed? We don’t really know, or, do we?

When I take the time to listen to myself, I do know.

I remember a snippet of a dream overnight. There was lots of day residue, with many layers of content like “peeling an onion” I’m thinking this morning. Peeling an onion was I phrase I wrote yesterday. Obvious day residue! Whenever I dream of wandering through a building, as I did last night, I am addressing change in my life. There were image clues that extended through lifetimes –mine, Dave’s and ours – hidden like little treasures in a few moments of dreaming. The building was my elementary school. Lessons of life are before me.

When my dreams spill over into consciousness, it is important for me to listen.

Will you call me up on the phone (when you are on the other side)? Just let the phone ring so I know you are there? He reminded me about all the calls over the years just to say “I’m thinking of you.”  I’ve always loved his phone voice. His radio voice.  I’m so glad we have recorded his voice.

I’m not going to worry about being strong. No one should have to be strong right now. I think it is simply time to be. Bring on the tears, the laughter, the new and old memories. We’ll take this one day at a time for however many snippets remain; however long a snippet is.

♥

I’m pondering a couple of words this morning: Writing and pain.

I almost didn’t publicly post Wednesday’s journal on losing my glasses. It seemed crazy. I don’t want people to get the wrong idea about my state of mind. I worry enough! Yet, these life challenges push one’s state of mind to funny edges. Writing and pain.

Writing works for me. I find myself giving voice to the inner workings of my mind and worries. It releases the not so important stuff that can clog my psyche. Or the fear. Or the crazy things. Or the pain. I have lots of friends who remind me that I can call to talk. But talking isn’t my release. It’s writing and crying. Words hit the page when I am overloaded by thinking. Crying hits the eyes when I am overloaded emotionally. Both are cathartic. Often the writing spills over into tears.

When I am “done;” that is, the writing reaches it momentary conclusion, I always feel better. When I post it that is my telephone call, the listening ear, the silent friend who can give witness to pain. In this case, the pain of grief and of anticipated loss. How many times have I read that what we need in grief is someone to sit silently and be? That’s what the pen and paper do for me.

Pain also needs a silent witness. Both emotional pain and physical pain. They manifest differently but I think I can see how similar they are. Pain makes us withdraw, become small and singular. It is why a caregiver or mourner wants to isolate herself. The attention is inward. Once we can turn it outward for solutions it is less powerful over us.

Dave is showing pain lately. He can’t get comfortable. His skin hurts. There is no padding on his body. I watch him sit up and lay down. He’ll lean sideways, propped on pillows seeking relief. His attention goes inward. He speaks less. He sleeps more. He adds an extra pain pill to his day. When the pain breaks, you can see the change just as if a fever is released with an outpouring of sweat. Color returns. A voice can be heard. His soul is back as if it had never left.

Sometimes the pain creeps up on us. In fact, most times the pain creeps up slowly and quietly as it takes over.  There is just a feeling that something is not right, life is half a bubble off of level. For Dave, it can be physical. For me, it is usually emotional. Either way there comes a distance between self and world.

Writing is my pain pill. After I post my rambling I take another step forward. Writing targets where the hurt hides. So I haven’t found my glasses (after Wednesday’s journal), but I did find that the fog of both physical and emotional pain was getting in my way for walking that day’s path. It was a momentary stop along my way.

There are lots of stops along the way. Those are the ones I usually write about. Some last longer than others. When I write, the distracting stop is shorter, and the planned lingering is longer. Lingering is the story of memories and legacy worth preserving. This hurt is good, a pain of growth.

I tried to dial the number for a phone-a-friend call this week. I didn’t let it go through. I’m better at writing. Do I want someone to listen or to fix it? That’s a good question. (This is the marriage saving question for long talks between Dave and me over the years!) When I write, I get to choose – am I looking to fix the pain or do I want someone to listen? Even if the listener is just me.

* * * * *

I’ve been lurking among several conversations of grief and creativity lately. I have opened the SFH journal community for giving voices to grief. I have been reformulating my viewpoint on loss in new ways. As I move forward in this part of life I am looking for new avenues of expression. I am feeling my creative process is seeking to emerge, to erupt. I just don’t know how quite yet. This is how I know that I am fluid in grief and in life. It is stagnation that can be devastating.

Nesting comes to mind, too. Comfort (food, shopping, gatherings). Creativity (art, writing, music, expression). Preparations (legacy, story, order). Philosophy (spirituality, beliefs, values).  I parallel birth and death frequently in my thoughts.  Birth and death both have a thin line of before and after. They are change agents. Nothing can ever be the same again.

* * * * *

Addendum: I realize that one of the top reasons I am feeling so much better this morning is not only through the writing process but a conscious ongoing self-care program, too. I am fortunate to have regularly scheduled housekeeping and massage. Yesterday the house was put back in order – fresh and clean – and I had an hour of pure relaxation. It’s like having all the stars align for a positive energy flow!

I also exercise with friends, try to eat healthy (or at least counterbalance the bad foods), maintain sleep and even nap as needed. This total care package cannot be underestimated for how I am coping. For those active as caregivers, or feeling the ongoing stress of loss, it is worth seeking out regular, scheduled support for your mind, body and spirit (and house). If you can’t afford private help, chore services, churches and local hospice organizations often have volunteers to lend you a hand, even if just once a month. Walking with friends or the dog, and book clubs are free. Hobbies, puzzles and doing things to relax for even an hour a week can be an important de-stress for the mind; it’s a shift of brain hemispheres. Of course, pen and paper are cheap! Physical health is critical, too (don’t I know this?!) so I justify massage as a “medical expense” for my well-being and health.

Peace of mind goes a long way to helping you take care of yourself so you can take care of others. Find room to care for all three – your mind, your body and your spirit – in your schedule.  If one area of care slips, as has my exercise program over the last few months due to health, then you’ll need to assess again what to adjust to your changing life.

Now, I’m off to the gym to meet my friend.

♥

Gotta write. If nothing else just to do something productive. I have a desire to scream and withdraw. Less today than yesterday, and probably less after I release these noises in my head. My jabbering voice. My noisy heartbeat. My ears. The squeaky joints.  Now I have a limp to accompany the vestibular challenge.

Back to Group Health for me this week. Well, last week, after I pulled what I figured was a groin ligament. It flared up again after I changed my weight training workout a couple of weeks ago. Apparently hip flexor exercises are not good for me! So after limping around for a couple of days with more pain than usual, I decided that it may just be time to get a professional opinion – ice or heat? Some days are better than others. My attempts to  stretch out of the  problem were causing more pain rather than relief. I haven’t had this for quite some time. Out of sight, out of mind. But back again. Referral to sports med, another $25 dollars, another trip across town, get an x-ray. Hmm. The femur bone is not the perfect fit into the hip joint. Perhaps the bone didn’t fully develop in childhood. Is there a theme here? Call it arthritis, he said. When you are old, he said, you’ll probably need a hip replacement. Great. For now, it will be six months of body realigning PT exercises to go with my already unaligned balance issue.

I don’t like complaining, but this sucks right now. Slipping the instep supports into my slippers as suggested created all sorts of dizziness yesterday. My brain just doesn’t want any more information or changes, no matter how subtle. Please. I’m getting grumpy.

I’m getting crazy!

True story… Many years ago (when Safeway still existed in downtown Olympia) I lost my car keys. It was between the car and the grocery store. Now, anyone can drop their keys, or have the key ring bust open. Not too mysterious. But that car required the key to lock the door as a protection against locking your keys inside. I bought my groceries, just a couple of items as I recall, and started to unlock the car door. Except I didn’t have my key. I dug through my purse. I searched the parking lot. I traced my steps through the store. I went to the customer service. No key. Door locked.  Too weird. I finally called a locksmith to fix the situation. Several months later I found the key – inside the car, under the driver’s seat. It just appeared. How? I have no idea, because I had to use the key to lock the door. I had cleaned out the car. I still don’t understand.

Yesterday, I was talking on the phone, my calendar notepad in my lap, in front of the computer. Something fell. I thought I had dropped my pen, but I hadn’t because the pen was still nested among the calendar pages. Oh, it was my glasses. I can’t see now. OK, glasses have become such a part of my face anymore that I look for them when I’m wearing them. Don’t laugh! I’m trying to talk and find my glasses at the same time I am talking and searching and confused. It’s a good thing I was on the phone with an understanding friend.  I grabbed the spare pair from my purse. I’m wearing them now. I can’t find those other glasses. Gone. Vanished. Not in the recycle box, not in the wastebasket. Didn’t bounce under the chair, or fall into my shredder. Can’t be found under the desk and not among the computer wires. Not in my jacket pockets. What the heck? Am I crazy?  I have moved everything a half a dozen times since then with no luck finding this pair of glasses. Could I have not been wearing them? No, I was working. There’s no way I could see. And I haven’t found them elsewhere (yes, I looked.) Why am I so distracted? How can a pair of glasses literally disappear from my face? This isn’t normal. This isn’t funny. Alright, it is sorta’ funny.

Mysteries.

How can Dave still be getting upright when he is literally skin and bones? (I can’t believe that there is less of him each week, I gasped to myself after his shower yesterday.)

How does his will work so powerfully against illness? What keeps him going?

Am I placing distractions in my way?

There is more to come. I am feeling a little crazy. Thanksgiving dinner was fun. This time now is not fun. It’s the aftermath – leftovers, creating new dinners from the main dish, finding more turkey hidden on the carcass, filling the containers, eating, using smaller containers, cleaning up, freezing dinners, storing the specialty gadgets. It has taken me a week to get almost back in order.  Four loads of dishes. Stack up the dirty ones until I put away the clean ones. Something always waiting to be done. It’s not simple and it is simple. “Aftermath” is my life analogy at this moment. I feel reactive, not proactive. (Grief is a reaction to loss.) This is grief. Caregiving. Life. I am operating in slow motion.

I am fighting my way through a thick fog: in battle against my own body; acting on behalf of Dave’s body. When I try to not fight I get restless. I have trouble being in the moment, because I don’t like it here. When I am still, I hear too many noises in my head. When I move, I am off balance. I spend more time in quiet as Dave sleeps longer. We sit without much to say. I can’t look forward and I can’t look back. Reactive, not proactive. I’ve lost my initiative for the moment. I can’t get away from myself or Dave’s illness.

Five minutes at a time. That’s how he combated Hodgkins Disease. This is how I get through today. Before I know it, the clock will move and another day is gone. This too shall pass, I remind myself.

♥

One year ago.

I just want to write enough to acknowledge my first thoughts this morning. One year ago I started writing, looking for the silver lining after Dave’s diagnosis of terminal lung cancer. We are all “temps” Dave would say, referring to the now past Dead Like Me television series.

One year ago. I started a private handwritten journal to release the fear and worry and angst of change. The anticipation of loss.

One year ago I felt the need to take the advice I’d given others as I found myself in a new role confronting grief at a depth I still find a need to give words to. I’ll keep writing until the words won’t come out any longer.

Life is a journey.

This morning I reflect on one year ago and the journey. I reflect on age and wisdom and experience and the things, challenges, emotions and people we must meet to get here. Here is where we are now.

Life is really a journey. It seems hokey, but the analogy works. It makes me want to travel about the country with camera capturing the busy and lonely roads, streets and highways of life. Maybe I can put that idea on my bucket list!

Now I have a bucket list? That’s funny.

I was reflecting on my life change, growth and journey as I drank my coffee in silence this morning. I watched Sniff the cat toss his little mouse toy up in the air and chase his imagination. From the couch in the family room, I looked around at the early morning dimly lit kitchen and dining area. The fireplace flickers a warm glow of dancing shadows. The kitchen counter is full of boxes and ceramic pans readied for Thanksgiving dinner preparation. Furniture has been rearranged to make way for people. I now understand why moms start the dinner days ahead of time. We just can’t do as much and quickly as once upon a time. On the journey we learn to pace ourselves.

What if I made a tag cloud* of my life? (Obviously ideas about my work gets stirred in my coffee or tea each day) What would it say and which words would be the largest at this moment?  Wife, mom, caregiver. Daughter, sister, aunt. Grief specialist, writer.

What words would I want to loom larger in my tag cloud? Hmm, I’ll play with concept. I love ideas. I love creativity.

Dave and I watch a lot of TV together. It’s a reason to sit and be close. It’s new fodder for conversation and exchange on the social ills of society. We’ve been watching some of the auction shows. He wondered what it is like to be able to go to an auction, plunking down a few thousand dollars just for the thrill of the win or buying something. You can do that you know, I suggested.  “No,” he counters, “I can’t. That would be taking away from you.” We both silently understand the implications on our futures. His bucket list has always been modest. His value system is education, ideas, and thinking. So, of course he wouldn’t consider frivolous spending. Reading, writing, thinking, talking. As long as he can buy a hamburger whenever he wants, life is good. “Yes, hon, you can.” Gratitude for the basics.

Now I wonder what his tag cloud would look like?

It’s Thanksgiving Day. Time to start making the Monkey Bread. I’ll let Leah punch down the dough after the first rise, as I’ll always liked to do when I was a kid.

I’m really glad to make this a big family meal this year. It’s different from our traditional  “just the three of us.” Leah will be over early and I think we’ll probably open the sparkling cider for our ritual before anyone else arrives.

One year ago. Today. One year from now. This is a journey.

Happy Thanks-giving.

♥

*A tag cloud (see sidebar list) is the way blog posts are are given key words for their content. As more articles are posted the tag words “grow” larger relative to the number of stories with the same tag. You can click on the tag word list to call up all the posts with the same tag.

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” ~Reinhold Niebuhr

When the going gets tough the tough go shopping. Or so I’ve heard.

I almost resemble that remark. I do spend a bit more money on things when I feel stressed. Or maybe stressed isn’t the right word.  It is stress, but it is the stress that comes from not being able to control what’s happening around me, as in Dave’s health. So I make buying choices. I control my environment.

Oh, yeah. I’ve been here before! Hodgkins’ Disease, meningitis, kidney surgeries (2), stroke… on the short list.

Gadgets have been finding their way home with me on my Costco trips. I look for all the Bed, Bath and Beyond 20% off coupons. I take the long way around the aisles when I go to Target for Dave’s Ensure. I wander around more than I buy, at least. Some of the activity is just getting out of the house. Then I get anxious and feel the need to return home before too long.

There’s a store theme here. It’s the house! My coping mechanism of choice is to decorate, move the furniture, or remodel. When Dave was on chemo for the year in 1998-99 I remodeled our kitchen. He went into the fog of the medicine and emerged a year later with a new kitchen. I deglossed all the stained wood cabinets and painted. I changed all the hardware. I had an eating bar built in, and replaced the stove. New flooring was installed. That kept me busy, and well, Leah was a toddler then. So I was forced to maintain a presence and routine for her.

22 years later I don’t have quite the same energy level I did then. But I still have the same coping defense. I still want to control my environment. I want to create. I want to express myself. I like the physical work of moving furniture around and purging excess. I like seeing the mixture of new and old when I finish. I like to plan and implement. I like finding purpose in form (and form follows function).

I was inspired by Hoarders this weekend! Hoarder is my guilty pleasure TV watching. That and Real Housewives of wherever, who don’t seem real at all most times. I’m glad to know that many others are addicted to Hoarders, too. I am fascinated by how the mind manifests this Obsessive-Compulsive Disorder. Many, many of the stories are exacerbated by loss. Fortunately, my inspiration is to create order after watching rather than holding on!

Our five bedroom house doesn’t have a guest room. That sound gluttonous, but the bedrooms are very small and I work from home, and Dave also has an office. OK, that sounds like an excuse!  I’m spoiled. (I’m fortunate.)

Leah’s room became the make shift sewing/craft room when she moved out, but really, I haven’t sewn a thing in years. Gift wrap, memorabilia and files and tax receipts in boxes clutter the room. Old outdated, video production equipment lines the hall to her room like a construction bone yard. That’s my hoarder instinct… there must be a use or proper way to dispose of everything. Recycle. Reuse. Reduce? I’m working on that one.  These days I tend to replace rather than add.

I have a purpose to turn Leah’s room into a guest room. I am preparing for “what if” or more likely “when.” What if someone, one of his kids, wants to stay overnight when Dave becomes more ill? What if I need some rest away from our bedroom while someone else keeps watch?  What if we need a hospital bed, would they bring it upstairs? Not likely. (I can’t fathom the hospital bed thought yet.) What if I have surgery next year and I need help for a few days?

A guest room gives me purpose to clear the way to change. I’ve had the project in mind for quite some time. And now is the time. I can control this environment. I’ll have to shop for bed and linens. I can make things pretty during an ugly moment. This is how I cope.

Leah, age 7 months, gnaws on her first turkey drumstick, 1987 (top). Apparently the tryptophan is setting in by the looks of Leah and Dave (bottom). We have very few photos of the three of us. Why I didn't get a tripod and learn to use the camera timer I'll never know.

Coping with Grief.  With the holidays in full swing I’ve been sharing some tips through my Storybooks for Healing outlets. But actually in grief, holidays just place a magnifier on coping. Coping with grief can be every day. Holidays add an element of anticipation and anxiety and social courtesies regardless of how we feel. These days come with their good points and bad points and are part of the rollercoaster ride. I think a lot has to do with unspoken expectations from each other.

We are hosting the whole family for Thanksgiving on Thursday.  It’s been over 20 years since our house was the gathering place. For about the last 15 years, Dave, Leah and I have carried on a full dinner for just the three of us. Turkey has always been one of Dave’s favorite foods. He could eat turkey all of the time, all year long. We always use Grandmother’s china. It doesn’t match a thing around here and seems delicate, but that doesn’t matter. I drag out  the table leaf to accommodate all the fare. The cats always try to sneak into the kitchen for a taste of the turkey requiring a quick rise from the table to shoo them away. We’d start the meal with our personal thoughts of thanks. I always tear up. We developed our own tradition. Dave added Brussels Sprouts to my original must-have list of foods. It just isn’t Thanksgiving without Monkey Bread for me. And gravy.

(My first Thanksgiving away from home, I was visiting two of my brothers who attended Evergreen at the time. Dinner was pot luck  – also one of my first – in the pool table room of Dorm A. `Greeners keep the peels on the mashed potatoes. Weird.  I’m not sure we even ate together that day. I think we crossed paths briefly. My second Thanksgiving away from home I went to my college roommate’s home for dinner. Her mom was a nutritionist and did not make gravy. What, not even for one day of the year? I was appalled! That’s when I learned that I have definite ideas of how things “should” be.)

I know in my heart that the turkey is not going to taste good to Dave. Too many foods are strewn on the “can’t eat that” list these days. I dread the disappointment. But I will keep my fingers crossed anyway.

When Denise asked about me having dinner here she expressed concern about stepping on our threesome tradition. That tradition is already gone. Last year was our last. Dave doesn’t really eat, much less get downstairs. Somehow bringing dinner to the bedroom wouldn’t be the same. Maybe it’s a little too reminiscent of dinner after his stroke that came two days before Thanksgiving in 1998. That year we smuggled dinner from the large family gathering into the hospital to Dave. Having everyone here for dinner this year is appropriate and right.

I am actually looking forward to the big cooking day and house full of people. I do enjoy preparing and planning. I like getting out all the dishes and gadgets. I love the smells and warmth of Thanksgiving. I like the retrospective moment of gratitude. This is my favorite holiday.

On Thanksgiving one year ago I started my journal. I sat with pen and paper and a cup of coffee. I sat in my funky old cushy office chair and scribbled in a plain notebook. It was my beginning of grief reflection. I saw that I was walking into living through what I help others make sense of – grief and loss. I have traveled over 167 pages with 84,000+ words and what feels like a million tears. This has been one of the most difficult, yet enlightening years of my life.

I have a long list to be thankful for this year. Obviously, the first is that Dave is here with us, still capable of sharing his thoughts and love and advice. The second is the new definition of family and what it means individually and as a whole. I am grateful for home, healthcare, financial stability and good food. Friends, too, of course. Time is important. The insight to make the best of our time is pretty darn important, too. And in spite of getting my own degrading health diagnosis I know that my symptoms are not near as bad as some endure.

But for Dave and I, our conversations are changing, just like the purpose of some of the rooms in our house and the fall of long standing holiday traditions. We are reorganizing our lives and honing in on what is important. We find ourselves giving thanks to each other every day, if simply for having one more day together.

♥

I want to invite those of you wanting to do your own grief reflection writing to the new Storybooks for Healing journal community. It is a private, or not so private (you choose because sharing is important), personal journal for you to Discover, Publish and Share your stories of grief, loss and love.  Starting in January, the eight week Storybooks for Healing bereavement group writing program will be available online through this community. For now you can write through 12 weeks of self-reflection prompts when you create your  free account.  Or pose a question on the discussion boards. It is not necessary to be any special kind of a writer or author, you just need feelings and a willingness to write about them.

This being the month of thanks, once you create your account, you can order the 5 Minutes a Day 30 Day Gratitude Journal for free. You’ll get an email each day with a prompt  to help you consider what all is going well around you. Just complete the cart order using the code THANKYOU. If you’ve wanted to write, but just haven’t made a habit of it, this also is a easy way to start without much time commitment. This offer is good through November 30, 2011.

I hope to see you there!

♥