Fin

Thursday afternoon in the community library during my respite period.  I had contemplated staying home up in my office to either write or begin the odious chore of getting my tax material in order for my appointment next Thursday with my new tax preparer.  Because I am really not in the mood to confront that necessary chore today, and because I am pulled to continue writing my way through this extraordinarily difficult period, and because getting out of the house is always a way to recharge my batteries a bit, I am here.  The tax material will still be waiting for my attention.

Hanna has been coming almost daily, but she is skipping today. Yesterday, Nic, the hospice social worker visited.  I was glad he did.  I was going to call him to invite him out but when I came home from shopping Tuesday afternoon, I found a message from him on my land line phone.

I had been thinking about talking to him as a follow-up not just to all that had been happening over the past week, but specifically as a result  of a suggestion that my brother-in-law Ward had made.  He called me as I was on my way into town to do my shopping and we wound up speaking for close to half an hour, much of it while I was parked in front of my first stop at Burritt’s meat market.  What stood out in that conversation besides Ward’s very welcome supportive comments was a particular, very practical suggestion: I should now make sure whom I would call when I would be facing Carol’s lifeless body.  I’m expressing the idea more bluntly than Ward did, but that is what we were talking about.  You would not want, he had said, at that stressful, emotionally wrought time, to have to figure out how to deal with the practical necessities, specifically the person or agency to call. And beyond that to at least have some idea of how I wanted to handle the final arrangements.

I had thought, if I had thought about that unthinkable yet inevitable, moment at all, that I would call hospice.  I believe my Tuesday aide had suggested that idea when I told her about Ward’s conversation. That seems and seemed reasonable but would not have sufficed because at that point I would still have to figure out who should be contacted to perform the necessary end of life service of collecting the body.  Contacting hospice would, in effect, just transfer that decision to it. It would be well for me to have researched possibilities and, if possible, to have made a decision.   I surely could still call hospice, who could then take over the necessary calls, including the one to the funeral parlor service I had chosen.

Ward’s suggestion turned out to be prescient.

From that point in my conversation with Nic, and being absolutely without any experience organizing a funeral, and never really having given that process any thought, I asked him to provide me some basic information.

Which he did, including, at my request, some estimates of cost, as well as possible services that would be offered.  He asked if I would like to have more specific information.  I said yes, and he agreed to call several places of good reputation.  I had told him that my preference, as far as my thinking had gone, and although it hadn’t gone very far, it had been abundantly clear, was that I wanted something simple, small, and private.  I also intended within those boundaries to respect Carol’s family’s wishes as well as I could.

This morning, I received an email from Nic reporting on his research into the several companies he had mentioned.  I am now prepared to make a decision.

A decision that is crushingly difficult to contemplate.  I have acquired retrospective respect for all those grievers who organized the funeral I in the past have so mindlessly attended.

I have been keeping Carol’s siblings and my daughters informed.  I asked the siblings to communicate these sad tidings to the extended family.  I am aware that Danielle, our daughter, now intent on leaving her current job as well as the state of Minnesota, is in the process of long distance interviewing for a new position in Pennsylvania.  She said she would find a way, whether or not she gets the new job, to spend some time with me and her mother.

I also, in the context of pursuing my intention of getting Carol’s story collection published, contacted friends at Mission Point Press, and informed them of the turn Carol’s condition had taken.

I might send separate emails to particularly close life friends, and perhaps a few writers who knew us as fellow practitioners.

As devastating as all of this has been, as emotionally overwhelming as it no doubt has been, and will continue to be, I find a little relief in brushing off my ancient administrative tools to work my way through this uncharted territory.

Doing that, and finding the time, energy, and inclination, to keep my writing career going by producing columns, keeping this journal and from it creating blog posts, and occasionally, still, marketing my work, all of that is necessary to keep my equilibrium.

Time to leave the library.

Friday afternoon, eight days after the above.  I am in my office at my desktop, and will summarize those intense eight days.

On the previous Friday, Carol’s swallowing difficulties had increased. I stopped trying to feed her nourishment. Hanna and I talked about transferring Carol to Munson Hospital Hospice on Monday. I agreed with Hanna’s suggestion to hire a private duty caregiver, who arrived in the early evening. She was willing to stay around the clock until Monday morning although she was not sure we had that much time.

She would keep Carol comfortable, her mouth moistened, her position changed, and any pain deadened by a steady dose of morphine.

I told Danielle that now was the time for her to come for what looked like a last visit. I also kept daughters Tracy and Kerri in New York informed. Danielle set out from Minnesota and arrived Saturday evening, a little after Allison, the private duty caregiver had arrived and had taken over responsibilities.

On Sunday evening, after what were now regular visits from the hospice nurse, Danielle and I went out for dinner after waiting for the hospice grief coordinator who was scheduled to come. She was delayed, and so I informed hospice to tell her we were going out and she could visit tomorrow.

As we were about finishing our meal, my phone rang. It was Kristi, the grief coordinator. I began to apologize for postponing her visit until tomorrow.

As soon as I got those words out, she said, “Carol just died.” She asked if I wanted to stay at the restaurant while they took care of things. I said we would be home in a few minutes. Once there, when the workers from the funeral home came, I talked with them as to the best way out of the house, and then sat in the green room until they were gone.

I did not want to witness the removal itself. I had said my good-bye with a kiss on Carol’s still warm forehead, looked for as long as I could tolerate, only a few seconds, at her still very pretty face.

Danielle stayed through Monday, and then got in her car to travel back to Minnesota. Tracy flew in from New York and arrived not long after Danielle left. She provided immense comfort over the next few days as I, along with Ward and Jane, met with the funeral director and worked on composing the obituary. When I wasn’t writing, Tracy was there to talk to or just as important to be there when we were both working, she on the work she had taken with her, and I on the obituary. When the funeral director called, I put him on speaker phone and asked Tracy to listen to what he said with her attorney’s head so I got things right. I was not thinking all that clearly.

Ward and Jane helped me disassemble the hospital bed and move the pieces into the garage. I did not want to see it.

I went about informing friends and relatives.

Arrangements that had to be made have been made. There will be a graveside service. With the help of the family, I have written the obituary, and made plans for a memorial reading of Carol’s stories.

This hideous ride is over.

Epilogue

At ten thirty at night, I sit in the green room watching a March Madness basketball game without much interest because one team is getting thumped and the outcome is not in doubt.  I think about finding something else to watch because I am an hour or two short of my usual bedtime.

But the clock turns my attention to the hospital bed in the next room. Isn’t it time, in a few minutes, to settle Carol for the night?  To make sure she is clean and comfortable?  To climb into the bed with her lying on her side and throw my arm around her, take her hand, feel, perhaps a responsive squeeze from her, stay there with her until her breathing announces her sliding into sleep?

But she is not there.

The hospital bed is disassembled and in the garage waiting to be disposed of some way, along with all the other medical equipment associated with her illness.

I realize that for the past two years or so I have been living a fiction of my own creation that I was still living with the Carol I had loved for almost forty years, a fiction fed by occasional real or imagined responses that encouraged me to continue talking to her, to tell when I was going out to get the newspaper or the mail or upstairs to shower or that we were going to move into the kitchen for breakfast or to the dining room table for dinner, what we would be eating at either of those meals, to sit with her while first I fed her meal to her, her own hands useless, watching her swallow and drink, finish meals with her meds in applesauce, and on days certain plan how to use my respite time whether shopping or having lunch with my buddies or working in the library, and then back home again to pick up the same routine from morning to when the clock reached just about eleven at night after which I would work on my laptop for some time and then settle down myself onto the couch  a couple of feet from her bed, where I could hear her restless movements and her breathing.

But not now.

That book is closed. 

I must somehow start a new one.

Later, upstairs in my office.

I reach over to my desk on which sits the ancient, manual perpetual calendar reading August 12th, the day Carol could no longer climb the stairs up to our bedroom and her long decline began.

I turn the device’s wheels to today’s date.

And so I begin.

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Like A Body Blow

Tuesday afternoon of a lovely spring day. I notice in my journal a remark from about a week ago: Just saw a blue jay land on the table on our deck amidst the still falling snowflakes, and shake its feathers as though to say what the fuck is going on? 

The blue jay if it is still around would be happy today, sunshine decently warm, temperature about 40, snow melting.

I, on the other hand, for reasons I will set out when I get back some energy, find this lovely weather in complete opposition to my mood, not because I don’t, as the blue jays no doubt do, luxuriate in the return of spring, but because that return of spring and all it suggests is particularly difficult for me to contemplate after the events of the last six or seven days.

I am writing when I am usually resting after coming back from my weekly shopping excursion, and I am way too tired to continue.  Will pick it up perhaps later tonight.  But what I have to say must out.  And soon.

Tuesday night.  Dog snoring, Carol sleeping.  I’ve turned off the late baseball game I was watching.  It is time to uncap what has been brewing in my head.

What started last Wednesday morning is what makes this glorious spring like day hit me like a body blow.  Spring is a time when we see life waking  up again, particularly after the harsh winter we have just endured.  So while that is what, I expect, most folks are feeling, that feeling in me is crushed under the weight of an approaching dark shadow.

At breakfast last Wednesday, Carol experienced a choking episode, apparently on a piece of breakfast sausage, the same kind of breakfast sausage she has been eating for years before the onset of her disease and all the way through it.  The night before, she had eaten the usual frozen lasagna that I serve on shopping days.  The night before that, she had eaten pork chops with me.

So although I have been aware for a very long time that swallowing issues are absolutely predictable as her disease progresses, and although there had been minor signs of that difficulty, I was not prepared for the chain of events triggered by that episode last Wednesday.

That afternoon, she developed a fever of something over 101.  I called hospice, and a prescription for an antibiotic was phoned in to the pharmacy in town.  Ryan came and stayed with Carol while I fetched the antibiotic, which I administered over the next couple of days.  I also noticed even more phlegm accumulating in her throat, some of which I was able to scoop out.

I cancelled my relief aide on Thursday and stayed home to monitor Carol’s condition.  The fever came down somewhat, and she seemed to be recovering.  The cause of the fever was determined to be that bit of sausage, getting into her lung, which I learned is highly susceptible to infection. On Friday, she seemed on the mend so I joined John for lunch.  I had been serving her easily swallowed yogurt since the incident.  Because my stock of yogurt containers was running low, I asked John to drive into town with me after we ate so I could buy some more of the coconut based variety that Carol needs because of her lactose intolerance.  He came along, and on the way back he was in the car when Hanna called and I discussed with her what foods I could safely add to Carol’s diet and when I should do so.  She recommended continued caution because of the danger of a repeat choking incident. When she came for a visit, she reiterated that warning.

By Saturday, I was feeling uneasy, and felt I wanted confirmation that we were over the hump of the infection and that her lungs were clear.  I called hospice, expecting to ask for a visit from a medical professional on Monday. Hanna had told me that there would be a nurse on duty over the weekend, but to my pleasant surprise I learned that meant the nurse would come out to our house.

He did.  He confirmed that Carol’s temperature was normal and that he detected no continuing problem with her lungs.  We discussed food possibilities, such as bread, crust removed, with peanut butter for protein.  Greek yogurt because of its high protein quality.  We were looking for easily swallowed but nourishing foods.  I jotted down a tentative menu.

The weather was warming up, and my spirits were rising with it. 

But there was a warning sign.  I admit that I was anxious to see Carol on a more normal diet, so I called Chip, the covering nurse on Sunday to check with him about what I was thinking of serving for dinner—elbow pasta with pesto sauce, a dish Carol always liked, as she was particularly fond of pesto.  Long ago, she made her own. He thought it would be alright, but recommended that I cut the pasta pieces into smaller chunks.  I did, but Carol did not seem interested in them.  I switched to chocolate yogurt, and she ate most of one container decently well.  She had little interest in the protein drink I also served her.  At that point, I was not too concerned about her mixed dinner appetite since it was not unusual for her to have little enthusiasm for either lunch or dinner, and I supposed this was an occasion when her dinner appetite was limited. I had certainly observed that kind of thing before.

I was not prepared, therefore, for what followed.

On Sunday, I had picked up some Greek yogurt.  I served that yogurt to Carol on Monday morning, but she did not swallow it, nor did she have much interest in the protein drink.  She almost always has an appetite for breakfast so this was concerning.

Hanna came in the late afternoon just before Ryan arrived for our usual supper.  Her prognosis after examining Carol was devastating.  First, she found a sore on the roof of Carol’s mouth, which she attributed to acid from food being stuck there rather than being swallowed.  Then she observed a choking fit when Carol was served some yogurt.

She said that it was time to consider switching my thinking about food from providing it because it was nourishing to withholding it because of the danger it presented of a fatal choking episode.  She also, in answer to my question, indicated that the phlegm I was observing in Carol’s mouth was the result of swallowing difficulties and not the sole cause of those difficulties.  Not being able to swallow efficiently prevents dementia patients from getting the phlegm down their throats as healthy people can do.  Limiting it, as we had been attempting, is helpful, but not a definitive answer.

Wednesday evening.  Carol in her chair having eaten some of her supper.  It’s a little early for me to write, but I want to keep this section going with the hope of perhaps picking it up later after Carol is asleep.

I  understood Hanna’s concern, but I confess I was not ready to concede that we had reached the point where withholding food to initiate the slide into death had arrived.  After Hanna left on Monday, and after Ryan and I had our dinners, I swabbed Carol’s mouth as I had been instructed to do.

To my pleasant surprise, she was clearly swallowing the water in the sponge-like head of the swab.  Swallowing it without difficulty.  Ryan confirmed what I was seeing.

The next day, by coincidence Clare from Chronic Care the supervising practice responsible for Carol’s being in hospice was scheduled to come by to continue certifying her eligibility.  Hanna arranged to be there at the same time.  I deliberately did not attempt to feed anything to Carol before they came.  I wanted them to witness what I hoped they would see: Carol still able to swallow.

I had pureed some bananas, which Carol had been able to eat on Sunday morning.

With Hanna and Clare watching, Carol ate the pureed bananas.  They went down without much apparent difficulty.  The two medical professionals agreed to hit the pause button on moving toward withholding further attempts to provide food.

Just a pause button.

I know that.  And also know there is no way to predict how long the pause will continue.

Hanna was here today, and insisted on that point, and I didn’t need the insistence.  This disease has been a very effective, if harsh, tutor for me.  And I have been a stubborn, resistant, but ultimately accepting student of its hideous machinations.

Will stop here to catch my breath.

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Of Then, Now, and the Future

In the community library on Thursday afternoon. With my computer on my lap, I have just finished an edit of the post that I will publish Saturday morning.  My neighbor, a senior citizen of my vintage, sitting to my left is doing some kind of low tech work using an actual pen hovering above a piece of paper while he studies the page of a magazine.

A nostalgic and refreshing sight. 

This morning for the first time in months, Carol said my name.  She might have been a little stressed as I got her ready for the day.  For whatever reason, she looked in my direction and clearly articulated “Steve.”  Later in the day, but much less clearly, she seemed to say my name again.

A short, but meaningful messenger from the past, announcing that it is not quite dead.  Some form of me still resides in her brain, available to her under certain conditions, whatever they might be.

And to whomever, specifically, that form is directed, the me sitting next to her, or the remembered me.

I don’t, at this point, try to pin that distinction down, nor do I really care.

What I do care about, as I have written about before, is that there is some form of we still alive and, if not well, at least hanging on.

Rather than ponder the imponderable, there are practical matters to deal with. In that regard, the first thing I did when I arrived at the library today was to draft a letter to the insurance company that holds a life policy on Carol.  We took it out years ago, calling it her funeral money  And I suppose that is what it still is.

We thought then that my retirement funds would certainly cover putting me in the ground, or in the cremation furnace, but there was no similar pot of money for Carol.  Of course, the money that would take care of me, could just as well serve for her.  But, if my memory is right, Carol in her usual way wanted this matter to be taken care of in her own way.  In her own name.

Thus, the policy.

My task today was to make sure that the money would be available to whoever would be responsible for Carol’s end of life arrangements, should I predecease her.  I am now the beneficiary of that policy, and so it seems a good idea to put a next beneficiary in the event of my already being gone.

The letter I drafted to the insurance company asked that our daughter be added as the next beneficiary.  No doubt, there will be more paperwork, but this is a start. When I get home, I’ll print up the letter and an envelope in which to mail it.

One more thing about to be taken care of.

This chore leads into the thoughts I have been having about the possibility that the predeceasing might go the other way, for in spite of Carol’s being ten years younger than I, her disease might eliminate that advantage.

She might die before me.

That is a really unpleasant thought.

Sunday night.  Woke up to more snow, wet and heavy.  Driveway not cleared, road not plowed.  I decided discretion was the better part of valor, fought off the tug of entrenched habit and routine, and chose not to drive down to the store for Carol’s muffin and the possibility of picking up the Times.  The road just looked dangerous with several inches of wet, heavy snow.  Although there were tire tracks, so some vehicle had come by at some point, there was no sign of any traffic now as I waited for ten or fifteen minutes before making up my mind to stay home.  This winter does not seem to understand that we are a week away from St. Patrick’s day, followed by the first day of spring.

Had to set the clocks ahead last night, and because I got up at the usual time I lost an hour’s sleep.  That, plus  the snow, started the day off on the wrong foot.  But Carol had a good breakfast, I did the Sunday Times puzzle on line and read a bit of the paper, watched a little baseball, served Carol pork chops with applesauce for dinner, which she enjoyed, and finished the day viewing a very nice fund raiser special on PBS showing an ancient but very well preserved Tony Bennett working with the much younger and vibrant Canadian jazz singer Diana Krall in the process of making an album.  Their music was wonderful, but even better was seeing how they worked out their back and forth handling of the lyrics, and how the piano player leading a trio including bass and drums added his view of how the song should be presented in terms of the intro and pacing.

After the show ended and it was time for Carol to head toward sleep, as has become a habit, I lay spoonwise in the bed with her with my around her until her eyes closed and breathing became regular. She is sleeping now but restlessly for some reason.  I can only guess her mind is active, exploring, or remembering, or inventing.  For example, I’ve noticed a new indicator of some kind of cognitive activity. When she was listening to a piece of music, her left hand seemed to be mimicking the movements of playing the piano.  It did not look spasmodic; rather the movement was more controlled, going from left to right and her fingers, so it appeared, doing a little up and down action.  I can’t be sure, but that’s how it looked.

I do guard against reading innocent signs into something more significant, so I offer these observations to myself while admonishing myself not to take them too seriously.

And yet, the impression came to mind with an immediacy that argues for my having seen something of note.  I’ll keep an eye out for a repetition.

All of this, the going to sleep routine, the meals, the close observation tell me, as if I needed to be reminded, how much a part of my life Carol remains.  It’s the reason that after more than a year, approaching two years now, I think, at the expense of my back I still sleep on the couch so that I can hear her breathe.  There is really no practical reason for me to do that.  She is perfectly safe in the hospital bed.

But  the thought of being on a different floor overnight just does not work for me.

I am sneaking up on the topic I thought I would be working on tonight, namely, my thoughts concerning the possibility that Carol might predecease me.

I’ll try to attack it next time.

Out of time for now.  My neighbor still hard at work.  I’ll leave him to it and head home.

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Just Letting It Be

Sunday night a little after midnight.  The dog is snoring loudly, an uneven accompaniment to “After Hours” played by Gillespie and the two Sonnys, Stitt and Rollins, in my earbuds from Pandora. 

It’s been a quiet weekend with a little more snow but nothing serious.  The Times hadn’t arrived at the store when I came for Carol’s muffin, so I read parts of the paper online.  I had done the Sunday puzzle last night.  Watched hockey and baseball this afternoon and the season ending episode of Victoria tonight.

Carol just laughed in her sleep.  She does that from time to time although perhaps less often than she had been doing.   I don’t know whether to attach any significance to the change in frequency.

More importantly, it opens the door, once again,  to speculation as to what is going on in her mind to which she no longer can give voice.  But that there is some cognitive or memory activity seems beyond doubt, and trying to penetrate the mystery of that something demands my attention even though I know that I will never be able to peek behind the screen of her disease to discover what prompts that occasional laugh.  A joke?  An incongruity?  A physical stimulation caused by her movement in the bed?

I have not heard her say my name in a long time yet it seems clear to me that on some level she knows me.  Perhaps not as her husband.  Maybe as her caregiver.  Maybe not even anything as specific as that.

When Tonda left Friday afternoon, after commenting that she had had a good day with Carol, she said something like, “I’ll leave you now with your beautiful wife.”

Of course, whether or not Carol still knows that she has a husband, I think of her, even in her reduced state, as very much my wife.

Which leads me to a thought I have been having lately, namely, my reaction when people, in all good conscience, compliment me for being a good husband, for taking such good care of my wife.

I am doing the best I can to make Carol’s quality of life as best as possible.  For example, I picked up on Tonda’s suggestion, after all this time, to raise the blind next to the hospital bed, which I had kept down to keep out the draft, and then have Carol lie on her right side, so she could look out of the window at the huge lilacs on that side of the house.

She must have loved the outdoors, Tonda had opined.

Indeed, she did.

And perhaps still does.

The constant question.

How much of the then Carol persists in the now Carol?  I’ve gotten used to her new normal, grafted it, in a sense, on my memory of her as she had been.  I am holding on to that composite of the once was and now is Carol.

When I am complimented for my good care of Carol, I want to say, “But yes, I am doing this for me as much, and perhaps more, than for her.  It is possible that were Carol in a facility her care would be as good, maybe even better, than what I can offer.  At least, it would be professional. I am taking care of her in our house because I cannot imagine, at this point, being without her physical presence in my life.”

But I don’t say anything like that because I cannot imagine that anyone who has not experienced what I am living through could, despite his or her best efforts, understand. So, I just accept the compliment and say “We’re doing the best we can.”

Not, I’m doing the best I can. But we are. Because I insist there is still a we.

And I also tell myself, with some justice, I can give Carol what no nurse or other medical professional can and that is a bridge to whatever memory however faint, she retains of me and our life together.

That is no small thing.

But I still haven’t touched on the other side of the coin.  Which is I am standing on the other end of that bridge reaching toward her, so I can bring myself to her.

In deep waters.  Will pause.

Tuesday night.  The dog, after rousing herself to walk into the kitchen to slurp a drink of water from her dish, has settled into her bed.  The electric heater, set to automatic, has just turned itself on filling the room with its noisy hum. Carol is sleeping peacefully on her side.

That is the important fact with which to start this writing session.

Carol usually sleeps, rather restlessly, on her back, from which position she manages to still get her feet jammed between the mattress and the bumper, or sometimes even to throw her leg over the top of the rail.  In that position as well, she usually breathes noisily through her mouth.

But now, her breathing is quiet and she is mostly still.

About an hour ago, she fell asleep with my arm around her and my hand in hers.  We were lying together on her bed in the spoon position.  Reaching this point evolved over several stages.  At first when it was time for her to go to sleep, I leaned over the bed and held her hand.  I noticed that this contact seemed to settle her into a sleeping mode, and so I would wait until her eyes began to close.  Then, I would say good-night, release my hand and fix the blanket around her.

But standing in that position, sort of leaning toward her, was difficult to sustain for the length of time it took for her to reach sleep. I began to sit on the edge of the bed.  But that, too, was a bit awkward as the back of my thighs pressed onto the top of the lowered side rail.  I began to shift my weight toward her with my arm across her chest to reach her hand.  Again, I was not happy with that arrangement.  I did not want my body weight to come down on her and it was a bit of a strain to prevent that from happening.

Thus the spoon position, in which both of us would be comfortable, I would still be holding her hand, and the same relaxing into sleep process occurred.

None of this would have mattered if I were going to just wish her good-night, and then go about my business, just like I always used to do. But now I enjoy watching her relax into sleep.  For that moment, all is well in our little world.

When she feels my presence, she relaxes.   I stay with her like that for a while until her breathing gets regular as she drifts into sleep.  I cannot explain why she reacts this way.  I imagine she feels safe.  Perhaps a shard of memory from our past sleeping together in the same bed rises from some distant corner.  In a way, her reaction in this situation is an amplified version of what has always seemed to happen when I take her hand.  On those occasions, as well, I noticed a calming effect, and sometimes what appeared to be a reciprocal pressure, a bit of squeeze around my fingers.  I thought, then, and do now still believe, that such a response might well be more neurological than emotional.

But maybe not.

I simply cannot know.

I have decided that I don’t have to.  What is more important is how I feel about these occurrences, particularly when I have my arm around her and hear her regular sleep breathing.

At those times, I am holding on to a memory.  Or more precisely, I am recalling that memory.  And, I too, for those moments, feel at peace.  I know nothing about our situation has changed.  She will not miraculously get better and be the person she was.  That is not going to happen.

Yet, in those moments, without conversation, it is as though we have agreed to just live in that moment and not ruin it by burdening it with analysis or expectations or regret or hope or anything else.

Just let it be what it is.

And that is more than good enough.

For it establishes a way for me to deal with the perplexing and frustrating task of living with what remains of the woman who has been so important to me every day for almost forty years from the beginning of my middle age to where I now sit in my senior years with the prospect, perhaps, of outliving her, and so face my own end alone.

And so with due apologies to Paul McCartney, without asking any help from Mother Mary, with no attempt to sing the line on key, but with a bit of Brooklyn emphasis I insist that I will just damn well let it be.




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Her Book

Monday night.  Jazz from KNKX in my earbuds.  The dog slurping water from her dish.  Carol quietly and peacefully asleep, which is both welcome and a bit unusual.

Spent the day in the house with the electric heater trying to provide a little warmth against the cold aftermath of the blizzard that roared through last night and into the morning.  Looking out of the kitchen window while getting breakfast ready, I was pleased to see my driveway already cleared.  I had no plans to go anywhere during the day, but it is always good to know I can get out if I need to.

I received several congratulatory responses to both my column published yesterday as well as my announcement concerning my short story publication.  It’s hard to quantify such occurrences, but I would say there was a definite uptick, including hearing from friends and family I had not been in contact with in some time.

All well and good.

But in spite of that attention directed toward my writing, or perhaps because of it, I spent some time trying to make good on my intention to find a publisher for Carol’s story collection.  A Google search brought up a list of possibilities broken down into three categories: big house, academic, and independent.

I don’t think it useful to spend time checking out big houses since I am reasonably sure they would require to be approached through an agent, which at this point I do not have. I will take a look and hope to be pleasantly surprised.

I scanned the independents and found three whose names are familiar to me.  A couple that looked promising will open for submissions on March 1st.  Among those supported by universities, a number seem to want work to be submitted to a contest.  Interestingly, I never liked that approach for my own work, but Carol, on the other hand, not only did but won recognition in doing so.  I guess I should pursue that approach both because it is hard to avoid and maybe some of Carol’s good vibrations will work again. These contests all charge a reading fee. I just don’t like the idea of paying somebody to read my work.  I suppose part of me, driven by my not inconsiderable ego, believes it is their privilege to be given the opportunity to read what I have written. The same holds for Carol’s excellent work.

I do recognize these publishers, even with university support, could use the money to offset costs, and perhaps as well need to limit the number of submissions to those serious enough to pay a few bucks.  I don’t recall Carol paying such fees years back, but maybe she did,

In short, very few writers and/or publishers make much money from short story collections.  The fees, from that perspective make a certain amount of sense.

Friday is March 1st, and I will send out at least one submission.

Tuesday night after midnight.  The forecast is for three to five more inches of snow arriving by late tomorrow afternoon. 

My recollection is that Wednesday’s weather has been bad more often than not.  Fortunately, I don’t have to go anywhere on Wednesdays although Hanna makes her weekly nurse visit on that day.  This week, though, Hanna is in Hawaii, and I do not know if someone is scheduled to come out in her stead.  I suppose I’ll find out in the morning.

At the butcher shop today, I bought a pork tenderloin and a small roast. Both anticipate a dinner with Ryan.  Last night, I cooked up a pork tenderloin with his assistance.  I had intended to make it for Carol and me, but saw that it was big enough for the three of us.

Which it was.  Just barely.

Carol seemed to enjoy the meal, as did Ryan and I.  That success encouraged me to plan on a repeat, and as long as I was in that frame of mind, I bought the roast for another time.

I never claimed to enjoy cooking, but the takeout possibilities here are not particularly appetizing.  The Chinese takeout is closed on Mondays for the winter, and there are just so many mediocre pizzas I feel like eating.

So, I’ll do a little cooking for our Monday night dinners.

Shopping day tomorrow.  I should get some sleep.

Wednesday night, quite cold, but no wind or falling snow.  Portable electric heater doing its best to provide a little warmth.

Spent way too much time watching the Michael Cohen hearing today, but I am a news junkie.  Cleansed my viewing palate a bit tonight by watching a good hockey game even though my team, the Rangers, lost.

This morning, I stood by Carol’s bed and pulled up the blinds and looked out at a light snow shower.  Nothing too serious but still most unwelcome.

“Carol,” I said, “It’s f***ing snowing again.”

She laughed. Which raises the question as to what amused her

Perhaps it was the expletive.

Or maybe just her northern Michigan heritage.

The first is more interesting and requires a bit of context.

I’ll begin by saying I am bilingual in this way: I can do the Brooklyn street argot of my youth or that of the English professor, complete with doctorate, of my adult life, and pretty much anything in between, depending upon my mood and circumstance.  In the Brooklyn of my youth becoming comfortable cursing was a rite of passage.  I can’t explain why that was so in my circle.  In truth, I never heard my parents or other adults in the neighborhood utter even a mild profanity.  They were probably aware that profanity was associated with the lower classes with whom they did not want to be identified. As for us, their children, maybe that class sensitivity was the reason we cursed, to differentiate ourselves from our staid, striving parents.  After all, these were what the poet Robert Lowell called “the tranquilized Fifties” that soon gave way to the raucous 60s. In the middle of that tranquilized decade, Allen Ginsburg published his profanity laced “Howl,” which is a literary version of what we were doing on street corners at night, offering a middle finger reprimand to all that social climbing niceness.

Be that as it may, profanity became a natural part of my linguistic tool box, available for humor or anger.  I recall our daughter saying she learned curse words from me when we were stuck in an interminable traffic jam on the Merritt Parkway approaching New York from Connecticut.

Coming from a very different background, Carol did not curse much, if at all.  In searching my memory as I sit here writing, I cannot bring up a specific memory of her using profanity although I believe she did on rare occasions.  I just can’t be sure.  What is true is that I am keenly aware, after seventeen years living on Old Mission Peninsula, that if folks here curse they must do it outside of my hearing.

Carol never expressed any unhappiness with my every once in a while cursing.  Maybe she just thought that was the Brooklyn part of me coming out.  She had loved living in Brooklyn, the energy and the expressiveness of its people as contrasted to the reserve of those she had grown up among. She told me many times that she enjoyed and respected that expressiveness.

So maybe that was what she was responding to this morning.  I hadn’t used the f word in anger although perhaps a little bit in frustration.  It was just a modifier, an intensifier.  To have just said, “Carol, it’s snowing ”again would have been inadequate.  It wasn’t just snowing yet again.  It was f***ing snowing again.

There is a difference.  And I suspect that is what Carol was responding to. I want that to be the case. I think it shows that from time to time, perhaps more often than I am aware, she is in the moment with me.

And I treasure those moments, not so much for her sake.

But for mine. And getting her book published, if I can manage it, holding it in my hand, will in a much larger way serve as a physical manifestation of all the moments I want to remember of our lives together.

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Of Music and Writing

Wednesday late morning between breakfast and lunch, the dog rises stiffy from her bed, old joints beginning to stiffen, Carol restless in her chair, music playing some kind of classical trombone piece, didn’t catch the name, but an unusual sound of the brassy trombone against a string quintet.  The  piece ends and the announcer tells us that the trombone we’ve just heard is of the alto rather than the usual tenor version.

I don’t write during this time period.

Ever.

But today I want to capture a moment, which in some ways is insignificant, but in another perhaps quite meaningful.

During our breakfast in the kitchen I have, as I do throughout the day, the radio  that sits on top of the refrigerator tuned to Interlochen Public Radio.  After breakfast when we move into the living room, I turn on the second radio, this one sitting on the piano,  to the same station.

Because it is Wednesday, the program that comes on at ten o’clock when we are pretty well through with breakfast, Performance Today, offers a once a week feature—the piano puzzler, wherein the very talented Bruce Adolphe rewrites a familiar tune into the style of a classical composer, let’s say Over the Rainbow as Beethoven would have composed it.  Fred Child, the host of the show, invites a telephone caller to identify tune and composer.

I have become addicted to this challenge.  Sometimes I guess the composer.  Sometimes the hidden tune.  Rarely both.

That’s not particularly important.

What is important is that Carol listens intently as well.  I am reasonably certain she is playing along.  I mutter my thoughts.  Today, after hearing a few bars, I said, “I think it’ Debussy.”  I don’t know enough music terminology to explain why I came to that guess.  I’ve just been listening to classical music my whole life, starting when my parents bought me a subscription to an RCA program that on a regular basis sent an LP of some famous piece of music along with a smaller disc that provided an analysis.  I listened to the music.  The analysis, not so much. As I grew into my teens, of course, I listened to the emerging rock and roll, and later developed an interest in folk and jazz. But always at certain times and in certain moods I would switch back to classical music.

So, I heard Debussy this morning.  And then I heard the tune.  I said, “There it is.  But what the hell is it’s name?”

Carol was listening.  To the music.  And perhaps to me.

I hummed the tune.The caller was having the same problem.  She nailed Debussy, but said the tune was on the tip of her tongue but she couldn’t pin it down.  Bruce Adolphe played it again.  I hummed along.  Carol nodded with the rhythm.  I remembered a snatch of the lyrics

“Smoke Gets In Your Eyes,” the caller said.

“Oh, yeah, a Platters tune,“ I said.  I could hear Tony Williams’ soaring lead tenor voice.

Carol did not seem to respond.  Perhaps her interest flagged.  Or the Platters, of my generation but not hers, meant little if anything to her.

But we had, I believe, shared the experience.  And that is the more significant point to be made, an indication that her impaired cognition still responds to music as well as my words, and can provide us a moment when we are in the same place.

A little later, I checked my memory.  Yes, the Platters did produce a hit version of the tune.  But it had been written twenty or so years earlier for a 1933 musical and had been recorded by among others Judy Garland.

Getting close to lunch.  Need to shut down this brief writing session

Wednesday evening after supper.  Carol was sleepy and did not eat with much enthusiasm, and now she is asleep across from me in her chair.

  I have been thinking lately about my very good relationship with Ryan.  Over the years, he would lend a hand for us, sometimes, but not always, on a paid basis, such as mowing the lawn, or dealing with the fall leaf cleanup.  More recently, that relationship has deepened as I have, without having intended to, assumed a kind of mentoring role as he navigates some life difficulties.

Nothing unusual in that.  If not by blood, I am his uncle, and I have a life of experience different from the members of his farming family.  And as one who taught young adults for over thirty years as a college professor, mentoring comes natural to me.

But the idea that struck me just a little while ago, not to make too much of it, is that he is sort of the son I never had.  Not for a moment do I regret the luck of the biological draw that gave me three daughters whom I love dearly.  Nor did I ever at all lament not having an offspring of the male persuasion.

Still, I realize that I am enjoying this opportunity to discuss matters with Ryan,  to offer him perspectives not readily available to him, such as talking to him about writing and publishing since he has some ambitions in that direction.

His weekly visits have deepened our relationship. It is a pleasure to have his company and he, without being asked or prompted, joins in my caretaking responsibilities, such as standing behind the wheelchair as I transfer Carol to it, and securing her in the chair with the gate belt, all the while encouraging her. He does this, I believe, in part because it is in his nature to be helpful, and more practically because he served as his grandmother’s main caregiver for a number of years. Other visitors, understandably, don’t quite know how to interact with Carol. Nor would I if I had not been obliged to learn.

Lately I have been telling Ryan that I expect to soon receive contributor copies of the magazine in which my short story will appear. He asked me if I knew when they would arrive, and I replied that I knew that the copies had been mailed.

Yesterday, Tuesday afternoon, into my repaired mailbox there arrived a fairly thick package.  The packaging was an oversized manila envelope, not the kind that would contain any product I might have ordered.  A glance at the return address showing Wisconsin confirmed my guess.

I brought the envelope into the house and opened it up, not too gently, and removed my three contributor copies of Rosebud Magazine in which on p. 56 I found “Like Water Over Stones,” my Holocaust themed story written originally years ago, and then rewritten a number of times to reach its final neat and clean self. It actually grew up to be a novel, still unpublished, but stands up admirably as a short story.  I stood in the kitchen looking at its opening page.

Of course, I was pleased to see my name in print. I would read the story over another time. Along with the jolt of excitement, there is also always the lurking suspicion that I will be disappointed in the rereading.

I closed the magazine and enjoyed the positive energy until the sense of satisfaction I always experience when I get something published faded. 

There would be little point to hurry over to Carol and show her.  In fact, I decided, doing so would not only be futile, but bittersweet with the emphasis on the bitter.  That time of sharing such good news with Carol was irretrievably gone. I would mention the news later when it was no longer buzzing around in my head.

From a different perspective, the magazine in my hand underscored my commitment to that part of my life. That will continue. I will show Ryan the story when next he comes. I will order copies and send them to my daughters. I will get the word out through social media.

But more important than any of that, I will rededicate myself to getting Carol’s collection of stories published. The collection is out at one university press now. I need to research other possibilities.

If Carol can no longer participate my my writing life, I can still work to get her the recognition she so richly deserves. She was always passionately supportive of my work as a writer, as I was about hers. I make sure new acquaintances are made aware of how good a writer she was.

When I do so, as happened recently, the individual will ask where a copy of her work can be found. However, since the stories were published individually in various literary magazines, they are nor readily accessible.

A collection will take care of that problem.



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Major and Minor

Monday night after a couple of days of warming that provided a respite from the polar vortex that drove temperatures to below zero with highs topping out in the single digits.  It was small comfort to know that a wide swath of the country was experiencing the same and worse.  In such circumstances, the old saw that misery loves company rings hollow.  Misery yes.  Loving the company.  Not so much. 

As if to somehow emphasize the point, the cold air hitting the back of my neck after breezing through the window air conditioner reminds me that the cold has returned.

I hear Carol restless in her sleep as she usually is.  Between me and her on the wood stove sit the flowers that the bad weather, whiteouts and icy roads, caused to be delivered a day late.

Not surprisingly, her birthday came and went with little notice.  The weather was so bad that not only were the flowers not delivered but Hanna did not come out for her weekly visit. 

However, Jane did stop by late in the afternoon when I was napping. I did not hear her if she rang the bell or called out.  She messaged me later to say she had left a card and gift for both of us on the bench in the entry way.  The gift turned out to be a package of mini brownies and the card featured a  historical photo of the Peninsula’s volunteer fire department in 1945. Each member in the picture was identified and I recognized some of the old family names.  Thoughtful gifts, both, and I regret I was not awake to receive them properly. Jane did say that the dog had done her best to welcom her.

I brought the flowers to Carol.  She seemed not to react to them.  I read Jane’s card, as I had the others that had arrived.  I detected some level of recognition.

It is clear that all of my preparation for her birthday, like so many things, such as insisting I get a muffin for her on Sunday, are much more for me than for her.

That is not surprising.

The noisy little electric heater just kicked on.  I have my ear buds on tuned to jazz from KNKX, Seattle.  The buzz from the heater almost drowns out the music.

I got a bit of good news and not so good news.  The good news came yesterday when I saw a notice that the new issue of Rosebud Magazine containing my Holocaust themed short story has just been published.  I am in good company with this fine little literary mag based in Wisconsin as this issue includes a conversation between Allen Ginsberg and William Burroughs  I have no idea how that conversation has surfaced so many years after the death of both of these counter culture icons.  I’ll have to find out when my contributor copies arrive. When they do I’ll order a few more copies to send out.

And I’ll announce this latest publication to the world. Whether the world will be duly impressed is another question.

But every publication reinforces my commitment to my writing career. In this instance, this publication encouraged me to send out two queries, one for each of my unpublished novels.

The not so good news came today in a telephone call from my dermatologist’s office to inform me that the growth removed from my scalp last Thursday was precancerous.  My doctor is sure she got all of it, and will have me back to take a look in six months, so clearly there is no urgency.

Still I would have preferred to have heard that the growth was innocuous.

It wasn’t, and naturally enough raises my concern not only for myself but for Carol.  In that regard I tell myself I’ve done all I can to prepare for the possibility of my predeceasing her. That is good, but not something I want to dwell on.

I think I’ll end on that note for tonight.

Saturday night, quite late. 

Thursday I went to town to at long last deliver to Munson Hospital the final wishes document I finished preparing a while ago.  I suspect I was delaying doing this task because on some deep level it required me to think about end of life matters.  Of course, I know I should do that planning, as unpleasant as it is, and  so I dutifully went through the forms, got the appropriate signatures for patient advocates, indicated what I want done with my dead body, and how I want to be comforted before breathing my last, all of which it is well to document now, but clearly pertains to a situation I have shoved into a closet in my mind to be taken out only when the urge to put the matter to rest motivates me to open the door to it.

I also have a couple of loose ends from setting up my trust that I need to intend to.  Nothing that consequential, but again I find little motivation to take care of them.  Which is not like me.  Generally, I do not like things hanging over my head that I know must be attended to.

It is likely that my present unanticipated situation is providing me with a somewhat different frame of reference for these kinds of decisions.  It will take some work to unravel that idea.

I can start that unraveling by setting out a an incident seemingly of much less significance than end of life planning. When I came home from my lunch yesterday, I intended to retrieve my mail before settling back into the house.  I pulled into the driveway, hit the button to open the garage door, eased the car in, got out and walked back onto the driveway my eye across the road toward the mailbox.

Which wasn’t there.

A snow plow had knocked it off.  The post stood naked.  When I got to it, several feet away in the snow I saw the box still attached to the cross piece that had been bolted to the post .

End of life planning on one day, and a mailbox problem the next.  I’ll take a look at each in turn.

If Carol were well, it is likely that I would not yet have filled out the papers I just delivered to Munson Hospital, let alone set up a trust. Perhaps at my age, my previous indifference to these matters was irresponsible. Carol and I did have wills, and I probably thought that was sufficient.

Maybe under those prevailing conditions wherein both of us were healthy a will would have been enough preparation. I remember that years ago we had investigated purchasing insurance that would pay for assisted living or nursing home care should either of us reach that stage. But the cost for such insurance, as I recall, was exorbitant at our then ages, so we dropped the idea, settling for each of us having a will. Other than that we assumed we would take care of each other.

I’m doing my best to hold up my end of that supposition.

It is, however, a more complicated story when I think about how I reacted to the mailbox being knocked off. Naturally, I was irritated. But more or less than I would have been before Carol fell ill?

It seems to me, I should be considerably less concerned about my mailbox on the day after I filed my last wishes, and walked into the house where I would take over Carol’s care from the relief aide. If I imagine one of those ancient scales, the kind with two shallow bowls suspended from a fixed arm that pivots to one side or the other depending upon which bowl has the greater weight, in such a scale the side containing my emotional attitude toward contemplating the end of my life would, I imagine, lean down much harder than the other side containing my irritation at having to repair a mailbox in the dead of winter when beneath the snow the ground was frozen solid making replacement impossible until the spring thaw.

While yet alive, I can avail myself of work-arounds to the mailbox issue if repair is not possible. Life would go on albeit, perhaps, with some inconvenience. However, I don’t recall any place on the forms I filed at Munson concerning the receipt of posthumous mail.

So why do the petty concerns bother me as much as they would if I weren’t acting as Carol’s caregiver, and in that context making sure she would be taken care of?

I think the answer is that part of me remains consistent with the man I was, and that man never reacted with equanimity to certain relatively minor assaults on his sense of how the world should be.

Such as there being in that world a mailbox remaining upright and available to receive mail.

That I still value that kind of mundane element in my environment, is as important to me as my admittedly much more important responsibilities. In fact, that retention of who I was enables me to be what I have to be now.

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Snow

Late Sunday night.  More snow expected overnight and into tomorrow. 

About six inches greeted me this morning.  What didn’t greet me was the service I had contracted with to keep my driveway clear.  On Sunday mornings, I always drive down to the market to pick up a muffin for Carol and the NY Times, if it has reached the store.  So, I was not happy.

I eyed the driveway calculating whether I would be able to drive over the snow and up onto the road.  I had already put on my snow boots to trudge across the road to pick up the local paper.  That walk back and forth over and through snow drifts argued against trying to back my car out onto the road. That now seemed like a really bad idea with the prospect of my getting stuck at the edge of the road where the snowplows deposit their loads.  I started to walk back into the house.  After all, I could serve Carol  her regular breakfast featuring toast instead of the muffin.

And I could read the Times online as I do when the paper is not available at the store.  And it was about five degrees and windy, so getting back into the relatively warm house seemed like a good idea.

But not good enough.

A combination of my dedication to routine and irrational urge to get Carol her muffin even though, if I thought about it, I am sure she would be indifferent to the breakfast menu sans muffin, these factors pushed me to get my car out.  I also recalled that I had spent a fair amount of money getting my old snow blower in shape before I had decided to save myself the stress and strain of snow removal and contracted with the service that had failed me this morning.

I went back into the house to don my ski mask, extra heavy double gloves containing one pair within another, flipped up my hood to cover my hat, walked into the garage, propped open the door with my splitting wedge to clear my egress behind the snow blower and onto the driveway.

I primed the snow blower, set the choke, maneuvered my clumsily clad fingers onto the pull cord handle and yanked.

Nothing.

Yanked again.  And again.

Still nothing.

Right after it had been serviced, the snow blower had started at the first yank.

Not today.

I can be stubborn when an idea has rooted itself into my brain.  I remembered that I had a spray that encouraged non-cooperative engines to start.  I located the can, aimed it at the carburetor intake, sprayed.  Then checked the choke and throttle control, just to be sure, grabbed the pull cord handle, and yanked.  With a spark coming from the intake, the engine roared into life.

It took me about fifteen or twenty minutes to clear the driveway.  At one point, I almost walked out onto the road in a whirl of blowing snow that hid an oncoming car.  Fortunately, I saw it in time.

By this time, my hands, in spite of my gloves, were achingly cold, as was I, and tired as well from all the effort.  I came back into the house, sat down to rest and wait until my fingers stopped aching.

I told Carol that I was now off to the store.

I returned a little later.

With a muffin and the paper.

Carol had her usual Sunday morning breakfast, and about that I felt very good. Admittedly an irrational feeling, but still enough to lift my mood as I sat down to read the paper.

Tuesday late.  The wind is howling outside and snow is coating the windows.  We are in the midst of an on again off again snow storm that is supposed to continue into Thursday.

I managed to get into town to do my shopping.  Driving in I encountered a couple of near whiteouts from blowing snow, and the roads were icy.  Driving in these conditions always makes me uneasy with the thought of Carol lying helpless in her bed.  I know my concern is exaggerated, that sooner rather than later she would be taken care of should I be disabled.

But knowing that does not free me from the concern.

My plan today was to get my shopping done fast enough to leave me time to go to the florist we had been patronizing since moving here seventeen years ago, and pick up a flower arrangement for Carol’s birthday tomorrow.  I checked with Lexie, today’s aide, and she said she could stay a little while longer if necessary.

My timing worked out even better than I expected so I finished my last stop at the grocery store on Eighth Street and drove east the few blocks to the florist.

Only to find out, and then to recall, that it had closed.  Not for the season, but closed, as in out of business.  That florist had been in business for seventy-two years, and picked now to quit.  Actually not now, as I was reminded when I checked online: it had announced its closing last July, but I had not remembered.

I still wanted flowers for Carol, knowing, once again, my emotions were triumphing over my reason since the latter told me that it was an open question as to how tuned in Carol would be to her birthday. In the best of times, she was largely indifferent to the calendar although she was careful to keep a list of family birthdays that she could consult.  Her indifference was to time in general.  For birthdays, or appointments, she required some form of external prompt, such as a date book.

Now, of course, she is even less aware of what day it is.  Still it is her birthday.  I will read to her the few birthday cards that have arrived from those who apparently share my conviction that we need to honor the day whether or not she can be made aware of it. With that in mind, once I got home and had with Lexie’s help unpacked the groceries, I looked up florists in town, found a couple, chose one that had the best review and called up.  I had an unexpectedly pleasant conversation with the person who took my call.  She asked if I were from New York.  I confessed I was born and raised in Brooklyn.  She was pleased.  She said she thought so, being herself from New Jersey, and so we agreed we were both fish seriously out of the water.

I ordered an assortment that would be colorful but left the details to her.  My knowledge of ornamental flowers does not extend much past roses.  They will be delivered tomorrow.  I will show them to Carol, and read her cards to her. I am aware that I am insisting on doing all of this even knowing that if I let the day pass by without notice of its significance, Carol would be every bit the same as she is.

But I would be unhappy, remorseful, an obligation unfulfilled, one that belongs to the Carol that was.

On this one day I am perfectly fine with that.


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On Caregiving and Writing

Monday night after a brutally cold day.  This morning the thermometer on the outside wall across from the window in the green room hovered at zero.  Our heating system could not warm the air in the house to a comfortable level, so I went downstairs to the furnace room to find the noisy, but effective electric heater that Danielle used in her bedroom, brought it up to the living room and aimed it toward Carol’s bed.  I sit with my laptop in front of the window in which our air conditioner is permanently installed, so every once in a while I am treated to an icy breeze coming through the machine and the blinds I have hanging in front of it.

This evening Ryan came for a pizza dinner, and we discussed arrangements for the viewing tomorrow evening for Carol’s uncle. We’re going to try work it out so I will join him and his father and wife for the ride into town.

Tomorrow is my usual shopping day, but because I didn’t want to have to go back and forth to town two times, I availed myself of the Shipt delivery service for delivery today, and it worked so well I might just start using it in the future to free up some more time, perhaps to go see a movie.

Having decided not to tell Carol about her uncle’s death, I still wanted to have her represented at the service on Wednesday to which I am not going.  I asked her cousin Phyllis if it would be appropriate for me to write a few words on Carol’s behalf that could be read at the service, and Phyllis thought that would be a good idea.

And so I’ve been working on a short piece that, as best as I can manage it, will provide a sense of how I observed the relationship between Carol and her uncle, as well as including my memories of him.  I edited the piece one more time this evening,and printed it out to give to Phyllis tomorrow evening at the viewing.  I’ll probably take another look at it tomorrow morning.

I will do that because that is what as a writer I do.  I find it is always a good idea to take another look even though I will say without any false modesty my first draft of any piece of writing is always more than serviceable.  It’s applying my craft through several reviews of that initial effort that I find so satisfying.

Wednesday night.  Cold and snowy weather, so I only left the house to go across the road to retrieve the newspaper in the morning and mail later.  Hanna came as usual in late afternoon and after checking Carol informed me that she would have to do the paperwork to recertify Carol’s eligibility for hospice.  As if she has gotten better and will no longer qualify.  It’s a crazy system born out of our country’s reliance on some form of insurance to provide health care.

I attended the viewing for Carol’s uncle yesterday evening, and it was good to spend some time again with the extended family even if it took a sad occasion to provide the opportunity.  Phyllis read and approved the words I had written as a way for Carol to be present at the service today. She said it would be too difficult for her to read it. Instead she gave it to Carol’s sister Jane for that purpose.

I had taken my time writing those couple of pages through several edits. I was happy to put my writing skills to such a good purpose.  My writing life is the second of the three areas I have chosen to explore, beginning with my role as a caregiver, and intending to move on to parenting my three daughters and four grandchildren as best I can in spite of geographical separation from all of them.

I was not always aware of how central writing would become to my sense of myself.  I suppose I could always write well.  I don’t recall ever struggling, nor do I remember paying much attention to or being aware of my innate ability.  In high school I was invited to take honors English, but didn’t see the point of taking more of a subject that, for the most part, bored me, although I was then, and always had been, an eager and voracious reader.  That interest just did not transfer to my school experience.

I started college in the age of Sputnik as a pre-engineering student when  the country wanted engineers.  I had done well enough in high school math and science, acing my physics Regents exam my senior year, my father was an engineer, and so my choice made some sense.

However, it did not take long for me to discover that my relative success in high school was not a good indicator of my potential as an engineer.  I got through that first year working harder than I was accustomed to, and decided I was swimming upstream.

I took a summer course to finish my English requirement while figuring out what I would pick as a new major.  To my surprise, I thoroughly enjoyed that course, and rather than finishing a requirement I instead chose English as my major, figuring,that I might as well do what always came easy to me.

Then I joined the college newspaper, became its feature editor, and at the end of my college career I won the Brooklyn College senior essay contest, in spite of, or perhaps because of, the fact that I wrote the contest essay in one sitting in a lecture hall, and my handwriting is famously bad. My prize was a ten dollar credit for the college bookstore, which in those ancient days enabled me to buy two or three decent books.

At that point, writing remained an essential but not a primary part of my life. Earning a living and starting a family came first. To that end,  I became a college English professor, which gave me the natural environment in which to launch my efforts as a writer. I started publishing short stories and then my first of six college textbooks along with fiction and poetry.

When I completed my doctoral dissertation, I managed to place its last chapter in an academic journal, my one and only scholarly publication. That I managed to do that is perhaps one of the best illustrations of my lifelong intention not only to write but to publish. I cannot speak for other writers, but for me writing and publication are two sides of the same coin.

Simply I must write. If I am not working on something, I feel unmoored. If I were not Carol’s caregiver, I would be writing a new novel, or story, or poem, although now that I am retired I can say there will be no more textbooks.  I started this blog as a journal–something I occasionally assigned to my students but had never undertaken myself– at the suggestion of a good friend who thought it would not only be good for me, but sharing my experiences as Carol’s caregiver would be a service to readers in similar situations. Thus this blog, which provides me immediate access to those readers as well as others interested in learning about this dread disease. 

Most important, my commitment to my life as a writer prepares me for the transition I have been going through, and from which at some time I will emerge. I cannot imagine with accuracy when that emergence will occur as it can arrive a number of different ways.

But what I see now is that as a consequence of becoming Carol’s caregiver, I am losing my role as her husband. I suppose now I am her husband/caregiver.

Of course, I will always in fact and emotion be Carol’s husband until one of us dies. But in my day to day life I do few things that are purely husband functions.

Or perhaps I am more accurately her caregiver/husband as that balance ever so steadily moves in that direction. The interesting corollary to that movement, however, which only recently occurred to me is that my continuing investment in my writing career is nudging its way as a possible replacement for my role as husband.

I recognize that, I live with that.

Writing takes a bit of the edge off that stark acknowledgement while providing me a way to deal with it.


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A Most Difficult Decision

Friday afternoon in the community library.  As I pulled into the parking lot I saw several dozen, or perhaps more, children going up and down the large hill at the side of the lot.  Those going down were doing so on their bellies.  No sleds.  I’m guessing they were enjoying recess time from their classes.

Yesterday morning, I received a text message that Carol’s uncle of whom she was very fond had died.  I’ve been thinking about that message in two very different ways.

The first way was the wording of the message, which stated that the uncle was completely healed.  I was, reasonably I think, at first a bit confused.  Healed from what?  Injury? Sickness? The question popped into my mind.  The next sentence answered that question by announcing that the viewing would be at such and such time, with the service the next day.

So I understood.  I will return to the cause of that initial confusion and what that confusion leads to for me.

The second, and more significant response, to that news was a different question, namely, should I tell Carol?   Maybe the answer either way seems obvious, but it was not, and still to a certain extent, is not so clear. I’ve been anticipating facing this situation in terms of Carol’s mother who has been for several years in a skilled nursing facility.  She is, I believe, 94.  About the same age as the uncle, who as far as I know had been living by himself although always with his daughter, Carol’s first cousin, nearby.

The uncle’s death, then, arrives within the context of the preparatory thinking I have already been doing concerning Carol’s mother.  The decision I have made after wrestling with the question since I received that message, and in part based on a couple of more professional recommendations, will likely guide me in deciding what to do when Carol’s mother’s turn arrives.

The first professional recommendation came in a purely coincidental conversation with Hanna, our hospice nurse late Wednesday before the text message concerning Carol’s uncle arrived the next morning at 7am.  I do not recall why I raised the subject with Hanna, but I shared with her my question as to how I should handle Carol’s mother’s death. I do believe my opening concern was securing relief coverage that would enable me to attend the funeral, which would be announced with little precise forewarning.  Hanna assured me that hospice would patch together some kind of coverage.

Having settled that concern, I moved on to the deeper more difficult issue.  Should I at that time tell Carol that her mother had died.  Hanna answered the question by reflecting her own experience that suggested that the only time she had observed a problem with informing a dementia patient of the death of a loved one was when that patient, lacking memory, but still capable of verbal expression, would repeatedly ask after the person who had died, and not remembering that she had been informed that the person had died would have to be told each time that the individual was no longer available.

In Carol’s case her verbal expression is severely limited, and I cannot measure her memory loss with precision.  She may no longer know who I am, but she seems perfectly comfortable with my caring for her.  Not too long ago, but still not recently, she would occasionally call out for her mother, and I would assure her that she was being well cared for where she was in the facility, and that comforted her.

So Hanna’s informed response did not help me much as my unanswerable question concerns whether there’s a place in Carol’s inaccessible long term memory for her mother.

Is her mother still in her mind?

I don’t know.  I suspect not, but I cannot be sure.

If she is, wouldn’t it be the right thing to do to tell her when her mother dies?

Maybe yes, maybe no.

My rational self tells me that no is the better answer.  What point would there be to giving Carol any sorrow at this juncture in her life?

My emotional self, however, feels that I would be doing her an injustice if I didn’t tell her something so vital as the death of her parent.

The balance was shifted to the negative today, albeit perhaps only for now,  by the answer I got to the question from Tonda the very experienced aide.  Tonda simply declared that in her view Carol would not understand what I was talking about should I tell Carol her mother had died.

For all her experience, though, I am not sure Tonda is right because there continue to be instances where although Carol lacks the ability to articulate her words, she does definitely seem to be processing what she hears and responding to it facially or with a laugh, or with the one or two words she can still say. In that latter regard, a week or two ago, she uttered a complete sentence, “You can’t do that,” apparently to some thought in her mind.

In less fraught situations, I deal with this question when Carol, as she is doing now, receives birthday wishes, or a note from some friend or acquaintance, which still occurs, coming from people either unaware of, or the degree of, Carol’s dementia. In those cases, I have no problem passing on the greeting to Carol, and cannot say with certainty as I sit here typing whether the names of these individuals register. It doesn’t seem to matter. These correspondences do not arrive with any emotional baggage.

But the ones concerning her mother, and by her extension her uncle, are certainly in a very different category, one for which my decision, at least as I see it, is consequential.

So without clear guidelines based on discernible evidence, the question remained. My head argued with my emotions, and my head prevailed in that it could see no good outcome to telling Carol her uncle had died. If he still resides in her memory and resurfaces into her conscious mind at some point, I decided, let it not be spoiled by the fact that he is no longer a part of her life.

Whether my decision concerning Carol’s uncle will set the pattern for her mother or not, I cannot at this point know. Likely it will, because Carol shared a deep and aiding bond with this man, not equivalent to the one with her mother, but not very far short of it.

In any event, I have arranged for Wendy, our very accommodating neighbor, to stay with Carol while I attend the viewing. 

Returning to the phrasing of the news from Carol’s cousin, that metaphorical view of life as an illness from which at death one is cured immediately took root in my brain as something worth writing about.  And, no doubt, that root will grow into a column, which is already forming in my head, an exploration of the different ways in which writers over the centuries have presented attitudes toward death. 

But for the present, it is enough to say that writing about this difficult decision has brought it into a focus, has placed it out on the table where I can poke it, turn it over, and make up my mind.

And that is the best I can do.

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