Pulling Back the Curtain

Saturday late afternoon on a warm and muggy day in mid July.  The weather has been hotter than I recall it being during the fifteen previous summers we’ve lived here.  Rocco is across the road spraying loosener on his trees preparing them to be harvested by shaking.  Carol was the first woman shaker driver on the Peninsula.

She is sleeping now, and I have some time before preparing supper.

Music playing from Interlochen, and I find that I am wearing an ancient  T shirt, on the front of which is the image of a grand piano and some bars of music, and on the back the word “Dad.”  Clearly, the shirt was a gift from one of my daughters, but I no longer can recall which.  I had forgotten I had the shirt until this morning when I found it on the bottom of the pile of possibilities in my drawer.  It feels a little tight, so perhaps I was a bit thinner when I received it.  Or it was not correctly sized by the buyer.  Or it shrank.  None of which helps identify the giver.  But what is clear, the choice of the images reinforces the centrality of music in my life.

Which leads to a thought I’ve been playing with for the past few weeks.  Some time ago, Kyle said something to the effect that he would love to know what was going on in Carol’s mind.  Of course, on a basic level, none of us ever fully knows the workings of another person’s mind.  We guess based on all kinds of factors, and in the best relationships we probably come pretty close to getting what our mate is thinking.  In those relationships, we soon enough find out if we were right or wrong.

But Carol’s dementia provides a whole different, much more impenetrable barrier, made even more so by her loss, for the most part, of the ability to articulate her words.  She still can provide one word responses, mostly of the yes or no variety, and even the occasional full sentence, as one of the aides reported her saying “I like watermelon,” when being offered that as part of her lunch.

To further complicate matters, as Kyle also explored, it is not possible to know what exactly she sees.  I have known for quite some time that the communication between her eyes and her brain has been compromised by the disease.  That is why she can no longer read.  And why when on the occasions I have her with me in the television room, she listens, but does not look at the screen.

Yet, she still does seem to be looking at things, such as at my face when I lean over her.  Waving a hand, as Kyle once did, in front of her eyes produces a defensive closing of them.  So, I can conclude that the images sent to her brain by her eyes do stimulate a response, but the nature of that response is not at all clear.

Perhaps some sort of sophisticated neurological testing could provide an answer.

Or maybe not.

These thoughts are just the beginning of an exploration of what is going on in Carol’s mind.

Moving away from the visual to the auditory reveals a clear difference.  She does process auditory cues, be they in the form of words, or music.  In terms of the former, she does respond not only to remarks or questions aimed directly at her, but also to what she might hear from others’ conversation or even the words floating out into the room from the television or radio.  I am also sure by observing her facial expressions, and occasional movements of her hands, that she responds to music.

And still I am only scratching the surface of the question.  Deeper questions remain.  Kyle has talked about, for example, her loss of the executive function of her brain, so that more primitive impulses are no longer constrained and emerge to create their own responses.  Her fear of falling might arise from that situation.  The loss of memory in dementia is clearly another obvious factor.  But what replaces those lost memories?  Is each day a new experience, and if not, to what extent is it not?

In raising these questions, we are trying to get inside the dementia.

Which, no doubt, is impossible.

I’ve taken this as far as I can for now.  Perhaps I’ll dig further.

Or perhaps not.  It is a scary place to be.

Monday night.  Carol snoring, dog sleeping.  Just watched Netflix documentary Evil Genius about a most bizarre murder/bank heist case involving a pizza delivery man with a pipe bomb fastened around his next as the unwilling bank robber in one plot line, and a murdered man found in a  freezer on another.  Somehow the two plots will meet and all will be revealed.  Too weird to be instructive of anything but distractedly interesting.

And a little distraction is a good thing.  I take it where I can find it.

As I often do, I just want to start what follows, enough so I will be able to let it percolate  a little bit more, and then wade into it.

In my attempts to understand Carol’s dementia, to imagine what it must be like from inside her head, I have been thinking the word“fog” describes her mental state.

But it occurs to me that might be wrong, and therefore misleading.

A fog suggests an environment lacking clarity, where things cannot be seen easily, or perceived at all, if the fog is thick enough.  And because Carol often does seem somehow to lack understanding of where she is, the word at first glance seems apt.

But I have been observing indicators that suggest otherwise.  It’s not so much an inability to perceive her present circumstances, but rather that her mind is elsewhere.  And that elsewhere might be perfectly clear to her.

For example, sometimes when I am offering her food to her, she seems unaware that eating is her immediate activity.  I then say her name with some emphasis, and she starts as though she is being brought back to the present moment, and takes a bite of the piece of toast I have been holding in front of her mouth.

A start.  Wading into deep waters.  Don’t want to drown.

Wednesday afternoon.  A very noisy and somewhat busy day.  Outside, a constant stream of farming related vehicles, fork lifts, tractors, and various sized trucks, all part of the ongoing cherry harvest  In addition there are the tourist vehicles in an unending procession  north to the lighthouse, and south back to town, as well as the mostly quiet packs of cyclists, whose riders’ voices sometimes carry into the house as they zip by—all of it almost making me impatient for the quiet of winter when the only vehicles are the snowplows roaring by knocking down the occasional mailbox

Almost.

The phone, too, has been ringing all day, telemarketers and political robo calls as we approach primary day.  Among these I finally received one of those scam calls I’ve read about, an automated voice in the most somber tones instructing me that it is from the IRS, which has issued an arrest warrant for me, and I’d better call the specified number.  Immediately, or be ready to be fitted for an orange perp suit.  I don’t know whether I should be amused that I have reached the age where I am deemed a target for such a transparent fraud, or insulted that it is thought I would fall for it.  In that vein, I also received a call from somebody who claimed to have heard I was interested in getting my book published, and offered me some help in doing that.  Having published fourteen books, I felt like calling this one back and suggesting he update his list.

Friday afternoon, and I am in the community library again for the first time in weeks.  None of my lunch companions were available, so after dining alone, and with more time available, I came here to do a bit of writing.  I first edited the blog that will post tonight—I’ll look at it one more time later—and now I’ll see if I can move on into my speculations about what it might be like being in Carol’s head.

The library is unusually active, perhaps because of the book sale in an adjoining area.  There are a few patrons checking the shelves.  A couple of voices in animated conversation float back here from the front desk.  To my left, a businessman asks if it is ok with me if he makes a quick phone call.  I assure him that he can.

I note that there may be a tactile component to Carol’s connection to the here and now.

For example, she seems to enjoy holding hands.  She always did.  Now, when I take her hand, she squeezes mine as she used to do, and does not let it go easily.  If I offer her my other hand, she  takes it and holds both with some pressure.

I do this most usually when she is lying flat on her back in bed, so I cannot think she holds on to my hands with such intensity because she is afraid of falling.  When I release my hands from her grip, she remains comfortably lying there as she was before.

So, what is going on during this simple activity?

More noise coming from the front of the library.  It is almost getting to be distracting, even for one such as myself so used to blocking out background noise. A toddler’s complaining voice rises above the din.  In spite of the distraction, I am happy to see so much activity in the library.

Of course, I can only guess.  Perhaps the feel of my hands in hers gives her some sort of comfort or security.  I do not think, although I would like to, that she knows the hands holding hers are mine, that they belong to the Steve she seems sometimes to still associate with me, or  her memory of me.

In a similar fashion, when I have her sitting on the edge of the bed preparatory to helping her stand so that I can guide her the couple of feet to her chair, she first grabs my shirt or pants.  That action clearly arises out of fear of falling.

But then when I put my arms around her in a kind of an embrace so that I will be able to get her onto her feet, she rests her head on my chest.  She is calm at that point, perfectly comfortable.  It is hard to reject the idea that she knows she is in my arms as she had been so often for so many years.

I talk to her throughout this process.

But she does not vocalize anything with the exception of an objection to being turned around on the bed as I get ready to help her sit up.

So I am left guessing.

I conclude a couple of things, recognizing that all of this is the purest speculation, not a little colored by what I would like to think is going on.

First, although there might be a little element of fear of falling throughout I do not think it is significant.

Second, she seems to enjoy the physical intimacy, particularly of my arms around her.

Third, and most important, throughout this process, she seems  to be in the moment.

Does she know who is helping her?

I can’t answer that.

Does she appear to be confused?  In a fog?

No.

When I ease her into her chair, and I am no longer touching her, then, she looks a little confused, as though trying to orient herself to where she is.

I can add one other factor.

The auditory one.

As I mentioned, I talk to her during this process.  I first tell her we are about to have breakfast.  And I indicate the menu.  It always includes breakfast sausage, juice, toast with blueberry jam, and then some kind of fruit, a banana, or melon, or strawberries, or pineapple chunks.

Sometimes I get a response, a little smile, or nod, or even a word or two.  Often, not.  It seems to me at that point, she is not fully engaged in the present moment.

Meaning in her head, she had been somewhere else.

Not in a fog.

Just somewhere else that made more immediate sense than my prattling about the breakfast menu.

Respite time almost up and I have gone about as far as I can on this speculative subject for now. My companion, the business man, is still hunched over his laptop.  I’ll pack up and head home.

Monday night.  It’s raining again, as it has been doing off and on the past few days.  At least the oppressive heat is gone for now. 

Yesterday, in spite of my earlier decision to give up on keeping the piano tuned, I had Brant come out again to fix the E above middle C key.  He did that and more, devising a way to lubricate the action so the keys wouldn’t stick, all the while talking to himself, or his tools, or perhaps the piano.  He loves to talk, about all kinds of things, such as his discovery of a way to plant potatoes on top of the soil.

Given how starved  for conversation I usually am on weekends, the dog being particularly useless in this regard, I was happy to hear what he said on that and various other topics including environmental poisons of which we are unaware.

After he leaves, I sit down at the keyboard and reintroduce myself to Gertrude and her waltz by pecking out the notes in the first few bars.  She does not seem to mind nor does she appear to be happy to see me back.

Not a lot of energy tonight, so I will just try to get back into my thoughts concerning what is happening in Carol’s head.

At supper last night, without planning to do so, I held Carol’s hand with my right hand while with my left I held the fork of food in front of her mouth.  I can’t say why I did that, never having done it before during meals.  I do like to hold her hand because she returns the pressure and sometimes seems reluctant to let my hand go.  On other occasions, she will put her other hand on mine as well so mine is enclosed between hers.

I do not know what to make of this.  Perhaps her actions are no more than neurological responses having nothing to do with any thought process or emotion.  Or maybe they represent her happiness with the flesh to flesh contact.  In that respect, I frequently hold her hand(s) as she is going to sleep, perhaps fidgeting as she sometimes does, and it seems to me doing that calms her down, eases her into a sleep mode as she closes her eyes.

Of course, I can be making too much of some or all of this.

But I am not so sure.

Perhaps these moments of physical intimacy stir pleasant memories.

When I took her hand at supper, I think it was because, as often is the case, her hands were waving about.  I believe at those times, she simply cannot control them.  Maybe I just took her hand to stop it from moving about in the vicinity of the fork with food on it.

In any case, she squeezed my hand and the involuntary motions stopped.

Absent a better explanation, I will permit myself to believe there is some intent on her part to feel her flesh against mine.

 

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Past, Present and Future

Sunday night, late.  Just going to jot down a few words, so I’ll have a place to start, perhaps tomorrow.

On the front page of today’s Times book review section were the openings of two retrospective looks at To Kill A Mockingbird.

I never read it.  Saw the movie, but did not read the book.

It was, however, Carol’s favorite book.

That’s the start.  Let’s see where it goes.

Tuesday evening.  Carol in bed and will soon be asleep.  Will try to pick up the thread.

When it became clear that Carol would no longer be able to read because her eyes would not stay focused on one line of type, I decided to see if she would listen to an audio book.  The first one I took out of the library was Mockingbird, to which she listened attentively, often smiling at something Scout, the young girl narrator of the story,  said.  I am fairly certain that her love for the book had everything to do with Scout.  Maybe she saw something of herself in that character.  Perhaps, to go a step further, she also responded to Scout’s attachment to Atticus as an idealized version of her relationship with her own father.

I don’t think she paid as much attention to the novel’s depiction of racism.  She was a little conflicted on that issue.  Of course, she deplored racism but she also loved her southern mother who proudly had the stars and bars on the front license place holder of her car.  Her mother does not have a mean bone in her body, but she did grow up in Virginia and most likely just accepted without malice the south’s treatment of people of color.

One more point, and I’ll try to indicate the relevance of all this.  After the success of the audio book, I brought home Go Set A Watchman, the then recently published novel, rejected when offered to publishers, but that when rewritten became Mockingbird.    Carol did not listen as attentively to that book.  I don’t think we got all the way through it.  I tried other audio books by her favorite authors, such as Louise Erdrich, but they did not capture her attention.

Mockingbird was special, in part for the reasons already mentioned, and perhaps also because hearing it triggered her memories of having read it.

It was, and perhaps still is, quintessentially her book.

It is not mine. Both reviews in this past week’s Times, while recognizing the book’s status and accomplishment, also take a somewhat less than positive view of how it deals with the racial issue.  I don’t intend to go into that argument other than to say it does not explain my relative indifference to the book.

For a variety of reasons, I was not drawn to it.  Although when it came out in 1960 it soon became almost universally installed on high school reading lists, at that time I was a struggling pre-engineering student at Brooklyn College.  I don’t recall paying much attention to it then.  Within a year I realized that I was swimming upstream in the engineering curriculum and switched to English as my major.  I focused on American literature, but Harper Lee’s book did not appear on any assigned college or graduate reading lists.

I can’t recall when I saw the movie, whether in a theater or on television.  I enjoyed the movie, liked the cardboard virtue of Atticus and the sass of Scout, but not in any intense way.  I just wasn’t moved to pick up the book, as sometimes I did, and do, after first viewing a film based on a novel.

When I saw the reviews in the Times, my first thought, quickly abandoned, was I’ve got to show these to Carol.

A futile idea of course.

And the beginning of where this piece is going.

Monday night.   I have not written much the past few days for several reasons, beginning with a weird allergic attack that caused my skin to break out in blisters, and that required steroids to quiet it down.  At about the same time I was preparing for the arrival of Tracy and her family Saturday night, getting them settled in on Sunday, and  then dealing with a thunder and lightning storm Sunday night that knocked out our power for about six hours.

Which brings me back to where I left off, the reviews of Mockingbird in the Sunday paper.  Those reviews, it would seem, would have been fertile ground for a conversation with Carol, but that is not quite the point because while we were both serious writers and readers, we did not often discuss books.  We just appreciated each other’s interests.

So, the idea here is not that we would have responded, each in our own way, to the reviews.  It is unlikely we would have dealt, except perhaps briefly, on the question of southern culture since Carol was, understandably, defensive about her mother’s southern roots when it came to the south’s legacy regarding slavery and attitudes toward people of color.

More likely, I would have been happy to bring the reviews to her attention, and perhaps move into a conversation about Harper Lee’s unusual career arc as a writer, which we would each view from the perspective of our own careers.

A week later on Monday afternoon, settling into the usual routine after a week’s visit from Tracy and family that filled the house with energy, warmth and good feelings.  Grandkids, not surprisingly, are growing, their personalities emerging and becoming clearer.  Watched two or three episodes of The Staircase with Tracy and found we did not see the murder case in that documentary the same way. Talked politics with Fred, and finally, enjoyed the antics of Dylan, their family beagle who formed a relationship with our Daisy, urging the old Golden to play.

Although my writing routine was predictably and happily interrupted during my family’s visit, I see that I did find the time to leave myself a note about an email from the Shaw Festival.  Will try to sew that thought into the Mockingbird thread.

At about the same time as  the reviews of Mockingbird appeared, a notice about the upcoming Shaw ‘Festival, which we attended some years ago, arrived in my inbox.  Both of these threads, Mockingbird and the festival, share a common thrust: they are intrusions from the past, insistent reminders of what has been lost.  Carol’s favorite book, on the one hand, and on the other a vacation trip made all that more special by the fortuitous circumstance of finding that our very good friends, Lowell and Sheila, on the grounds of whose house we were married, were also going to the festival at Niagara on the Lake the same time we were.

As is so often now the case, these memories are bittersweet, with the first part of that oxymoronic word more prominent.  I could not, in any meaningful way, talk to Carol about either the book or the festival.

There really is nothing more to be said on that point, and I don’t want to start wading into the waters of self-pity, so I will move on.

On the Friday before Tracy and family arrived, a draft copy of the trust I am setting up came in the mail.  This morning I emailed my attorney with a few question I would like answered.

I will pause here, take a figurative breath, and dive into this intensely difficult subject when next I sit down to write.

Mockingbird insists on getting my attention.  Its author appears as a clue in today’s Time’s crossword puzzle.   I have inserted Harper Lee’s name in the puzzle and will move on, which in this case means working the puzzle.

Wednesday, early afternoon, an unusual writing time, but Carol is asleep, and since breakfast was late, lunch won’t be for a while.  Yesterday was a full day, shopping, Ryan for supper, and so I wasn’t up for sitting down with my laptop late as I had planned.  Try to make up some ground today.

I am setting up the trust for the obvious reason that I want to be sure that Carol will be well provided for should I predecease her.  Of course, being ten years older, I thought that would be the case, and having designated my beneficiaries, starting with her, the only vexing question was where I was to be buried, in Michigan or New York.  That question remains, but Carol’s no long being competent and requiring care, opens up a whole range of unanticipated questions for which I was, and am, unprepared to answer, but which, nonetheless, insist on being presented to me.

I have discovered, not surprisingly, that this is a particularly lonely activity.  My attorney, and financial advisor, can tell me how to do what I want, but neither they, nor anybody else, can help me decide what I want.

So, I begin with the need for Carol’s care, and thus the trust.  A trust must have a settler, the entity—in this case me—that establishes the trust, and then a trustee—again in this case, me during my lifetime—who manages the trust.  As such I determine the assets that go into the trust.  Apparently, I will also create a pour over will to deal with assets that are not in the trust when I die.  In my case, I imagine these will be mostly personal items.

That’s about as much as I now understand, pending answers to questions, and/or confirmations of what I think I understand from my attorney.

None of the above is particularly troubling to deal with, even a bit interesting, as the law has always fascinated me, in part because as a word person I appreciate the law’s attempt to provide precise relationships between language and the world. I had a glimpse into that attempt  when Carol worked her way to her JD.

Seeing Carol’s JD on the wall is a painful reminder of the was, just like the copies on her bookshelves of the journals containing her stories.

But that is not what I am talking about now.  Perhaps I am letting myself be distracted.

So, to refocus, the technicalities, the legalisms, of my trust appeal to me on an intellectual level.

However, the decisions those technicalities involve are the ones that are emotionally fraught, and ones I need to deal with by myself.

They include successor trustees, who will be responsible for Carol’s care when I am gone, and the ultimate distribution of assets that will remain after that care is no longer necessary.

Those questions are complicated by the fact of there being children from two marriages, and an anticipated inheritance coming to Carol from her family.

I have always posited fairness and equal treatment as the cornerstones of my parenting responsibilities.  I still do.

The application of that doctrine in the present and future is the challenge.

And I must handle it alone.

 

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Dark Thoughts

Saturday afternoon, humid and cloudy, rain possible, even another thunderstorm as we experienced last night.  Carol asleep in bed after the morning in her chair.

I have not been out to check my garden in a few days.  Last I looked the beans had not come up yet.  Each year I usually have to plant them two or three times before they arise.  I don’t know why. Maybe the ground has to reach a certain temperature.  I think the garden is going to have to accept my relative indifference to it this season.

Or not.

On Thursday when I returned from working for an hour or so at the community library I found the aide checking out the new book I had started reading and had left, as I always do, on the coffee table.

The book is a new biography by Erica Wagner of Washington Roebling, who took over the supervision of the construction of the Brooklyn Bridge after his father, John Roebling, the designer of that now world famous structure, died slowly, and painfully, from tetanus after refusing appropriate medical treatment for an accident that smashed his foot.

Clearly, I am somewhat familiar with that part of the younger Roebling’s life, having read David McCullough’s account of the bridge’s construction.  Of course, I am always interested in things related to my hometown of Brooklyn, and that bridge is central to Brooklyn’s identity.  At the time of its construction it was a ground breaking engineering miracle, and it is still a compellingly beautiful structure.

This wandering introduction does intend to lead somewhere.

So, here it is.

Naturally, as the retired English professor and present day writer that I am, I was perfectly happy to see the aide exploring the book.  I know she is taking college classes in the nursing program in the community college in town.  Wanting to indicate my approval of her looking at my new book, I started talking to her about the bridge.  Not surprisingly, given her aspirations to become a nurse, she was perhaps most interested in the senior Roebling’s death from tetanus.

Undeterred, I showed her how the bridge appears in the print of the Brooklyn Heights Promenade hanging over the fireplace.  She finally got the opportunity to break into my Brooklyn chatter to say, yes, she had seen the bridge herself years go on a trip to New York.

We are approaching the point.

Which I can articulate no better than to say in the words of the old cliché, what goes around comes around.

Looking at that print, then Carol in her bed not far from it, stirs my memory of that time, previously referenced in an earlier post, when she was living in Brooklyn and when I came in to spend some time with her, we would often dine in a café on Montague Street, and after eating, we would walk to the Promenade and sit on a bench very much like the one in the print and look out at New York Harbor, and of course at the bridge, visible on  the lower right, spanning it.

But I do not mean to dwell on either that or Brooklyn, although doing so is perfectly natural for me, and no doubt tedious to my poor audience,

Rather, I am thinking of other patterns of repetition.  This morning when I wheeled Carol into the kitchen, I was struck by the thought that my father, at about my age, wheeled my mother around because of her arthritic knees.  She was about ten years younger than he, as I am ten years older than Carol.

My sister, too, was wheelchair bound, as a result of crippling back difficulties.  My brother-in-law pushed her around in her chair.

One way of looking at these circumstances is to attribute them to coincidence, and leave the matter comfortably there.

But the way certain associations from the past continue to reassert themselves into the present offers the possibility of another explanation.

Karma?

But that would suggest some kind of cause/effect patterning.

My mother and sister died young.  And Carol is in the grip of this hideous disease.

So I don’t want to go there.

Let’s just say thoughts to occupy a rainy afternoon.

And leave it at that.

Monday afternoon.  Rain continues.  I shut off the irrigation system.  Carol noisily but deeply asleep.  A good eating day so far, full breakfast, and, unusually, a  good lunch of a yogurt, protein bar, and glass of juice.  Ryan will likely be here later, and I guess we’ll go with pizza. I had thought about grilling some burgers, but that will have to wait for better weather.

Yesterday was Father’s Day.  I always take a low key approach to holidays, so I was not particularly disappointed that Carol could not share this day with me.  On the other hand, I was happy to speak with my three daughters, Danielle in Brooklyn Park (I take note of the name) Minnesota, and Tracy and Kerri from Kerri’s house in Woodbury, Long Island where she and her sister’s family gathered for a barbecue.  That provided an opportunity to receive greetings from grandkids as well.

Those conversations took place in the evening at a time when the long, solitary weekend was drawing to its close, so they were especially welcome.

But, as pleasant and welcome as they were, they also stirred up thoughts of my future.  Increasingly, I find it difficult to see where I will spend my remaining years.  Carol’s longevity might take that decision out of my hands, for she will be here, either with me in our house, as now, or in a facility.  In either case, I, too, will be here.

So, my thoughts this gray afternoon as to my future contemplate the possibility of Carol predeceasing me.

I don’t dwell on such thoughts.  They just seem apt in part by yesterday’s contact with my daughters, and in part perhaps because of the absence these past few days of the sun.

I do not know, nor does Danielle, where she will wind up.  I don’t think she feels the pull to come back here.  It would be nice if things worked out whereby she could live close to me, but that seems unlikely.

My New York families are rooted there.

These idea are beginning to whirl around in my head, so I will pause here to let them settle down.

Thursday evening.  I am keeping one eye on the NBA draft to see whom the Knicks will pick.  I don’t follow college basketball, so I have no knowledge, and therefore no preferences.  But I have been following the Knicks since I listened to games on the radio when they had players named Ray Felix, Sweetwater Clifton, and Ernie Vanderweighe, and I talked with my father about the chances of the team reaching a hundred points.  That was long, long time ago.

An eventful day, including a visit from the nurse practitioner who found Carol to be in good physical condition.  She congratulated me on the good job I was doing, and talked about whether or when I should consider a respite break of a week or two.  She understood my lack of enthusiasm for that idea now, unless I used it to take a trip, perhaps to New York, or Minnesota to visit daughters.  That does appeal to me more than banging around this empty house and visiting Carol in a facility.

Highlight of the day, though, was lunch with Archie an elementary and high school classmate back in Brooklyn, now living downstate but up here for a few days.  He raised the question of whether I would return to New York, something he has thought about.

Today is also Danielle’s birthday, and talking to her, along with Archie’s question, brings me back to where I left off thinking and writing a few days ago.

Which involves musing about my future.

My immediate future is clear.  I continue as I am now, perhaps with the addition of a respite trip.  In that regard, it seems to me that Carol has plateaued.  I don’t see much deterioration in her condition.  I recognize living so intensely in this situation makes it difficult to notice change, but still I don’t think there has been much.  In consultation with the nurse practitioner today, we fine tuned her meds, but nothing very dramatic.  We removed the anastrozole, the hormone suppressor that was part of her post breast cancer regimen.  Doing so was a hard headed concession to a possible recurrence of cancer in light of her being in the grips of her present disease.  Unstated was the  thought that should that happen it might just be better to let that disease takes its course.  We made a couple of other minor adjustments but nothing indicative of a change in her condition that had to be addressed.

However, beyond that clear present is the much cloudier future.

I am setting up a trust to deal with Carol’s needs should I predecease her.

That, too, is clear and necessary.

But what about the reverse.  Carol predeceases me.  I am ten years older, but in fairly good condition while her disease will likely shorten her life, by an indeterminate, and at this point, impossible to predict degree.

Some time ago, I thought, briefly, about her funeral arrangements.  I first did so when one or two people suggested to me that I consider hospice for her.  That suggestion, though I am sure it was offered with the best of intentions, has proved to be seriously premature.  My thinking about her funeral started and ended with the idea that I would arrange something befitting this place and her family background, which is fundamentally different than mine.

I am content to leave it at that.

And I’ll just peek into the room in which resides the vexing question of the arrangements for my own demise, in particular, where I want to be buried or at least memorialized for I am sure I want to be cremated.  Spending thousands of dollars on a coffin seems ludicrous to me.  In one sense, this ultimate decision is, of course, a matter of supreme indifference to me.  But in another way, one that I need to deal with, I should think about those I will be leaving behind.  Where should my remains and/or memorial be?

Here where Carol will be, and where we have two graves reserved for us, or Long Island where my family is?

Impossible to know where Danielle will be, and how would she feel if her mother and father were separated in death?

I confess I cannot come to a decision at this time.

So I will, again, shut that door.

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Kyle’s World

Sunday evening.  Carol is asleep.  For the past four or five days I have been dealing with an old physical problem, one that has not really bothered me for some time.  But it decided to remind me that it could still make my life miserable.  I have been fearful of the return of this condition because in my present circumstances I cannot afford, Carol cannot afford, for me to be disabled.

I want to locate the problem in my back, but that may not be clinically accurate.  The symptom of the problem, though, is clear enough, a shooting pain that accompanies the slightest movement, such as sitting down, or getting up, or walking, or picking up something, any such ordinary motion produces a jolt  strong enough to make me grunt and stop whatever I am doing.

That nexus of that pain, as best I can locate it, is my lower right back and right hip area.  It definitely does not feel like a joint issue.  Rather I’d guess it is a soft tissue problem, a tendon or ligament stretched or strained.

This condition first introduced itself to me when I was in my thirties.  Typically, it would slowly ease up over a couple of weeks.  It was largely indifferent to rounds of physical therapy, or treatments from chiropractors.  Muscle relaxers didn’t really help much, but a scotch and soda sometimes had some effect.

Now, however, I just have to grit my teeth and try to be careful although the motions that bring a stab of pain are so inconsequential there really is no way to avoid them altogether.  Advil, which I don’t recall ever trying in the past, seems to provide a few hours of relief.

All of this provides the immediate context for what follows, and which I will begin writing for as long as the Advil enables me to sit and hit the right keys on my laptop.

In reviewing the blog that was to be posted yesterday, although written as usually is the case some time ago, I was struck by how prescient Kyle had been.  His goal was to condition Carol to be able to stand supporting most, if not all, of her weight long enough to then turn and sit down.  This would be the essence of the transfer from bed to wheelchair, and from wheelchair to bed.  The key was for her to cooperate in sitting up so that her feet would reach the floor.  She would have to be made to overcome a primitive impulse to throw herself back.  It became clear that she would not do this by herself.  But she could be made to accept a hand behind her neck pulling her into an erect sitting position.

That has been achieved.  Sometimes she vocalizes her unhappiness with being made to sit up this way, but most often she accepts the pressure that achieves this movement.

The next step is to get her standing.  The whole point of this procedure is to avoid having to lift her up.  Once she is sitting, her feet must be on the floor.  Sometimes she needs encouragement, pressure on her thighs to get her legs down and feet grounded.  Then, with verbal encouragement, and providing a little lift, she rises.  Once on her feet, she might need to be steadied, but she is bearing most of her weight.

When she is standing in a kind of embrace, my arms around her, we  do a little two-step shuffle to turn her around so that she can sit again either on the side of the bed or the seat of the wheelchair.

Throughout this procedure we have a medically necessary physical intimacy that is both a mocking shadow of our marital physicality but also a present time version that warms my heart.

In any event, I have learned how to do this transfer fairly well.

But now that my—I’ll call it my back– is barking at me, performing this process can be problematical.  I don’t want a shooting pain to hit me at any point where I need to be steady.

So far, with the help of the Advil, I have managed.

Will pause now.  I expect to continue later tonight or tomorrow.  In the next section, I thought I would describe a typical Sunday morning now that Kyle’s goals have been reached.

Late Tuesday afternoon, classical music from the Interlochen radio station filling the room.

On the way back from town this afternoon after grocery shopping, my car sound system was playing music from my old MP3 player.  More specifically, it was playing albums in alphabetical order.  The browse album function does not respond when the car is once moving, so I let it do what it wanted to do when the album I had chosen a couple of days ago ended.  That album was Ray Charles’s Genius Loves Company.  So the alphabetically minded system moved on to Coltrane’s Giant Steps, which accompanied me back and forth to town. It finished when I was almost in sight of home, and transitioned to Paul Simon’s Graceland as I drove into my driveway.

During my drives back and forth to town I was struck by Coltrane’s music in my ears, its mournful, sometimes seemingly nervous complexity, and outside my car  the hills, orchards, and blue waters of the bay flashing by in a restful panorama.

A striking contrast. That somehow suggests how Carol and I now live betwixt and between our then and our now, not quite finding our footing, just as the probing, unsettled and unsettling music coming out of Coltrane’s horn is at odds with a landscape that speaks of eons of continuity.

Carol is asleep in her bed, the dog dozing on the floor.  A combination of Advil and the activity of a shopping day seems for the while to have eased my back discomfit.

And so I’ll do a bit of writing picking up where I left off.

Which was to describe a typical Sunday morning in my world as created by Kyle and his wonderful chair.

Sunday mornings begin the same as the other six days.  I usually rouse somewhere between six and eight.  I rouse.  I do not get up.  I am not a naturally early riser.  But the combination of sunlight working through the blinds, and my awareness of Carol sleeping in her bed a few feet away begins my waking.  Sometimes Carol vocalizes in some fashion.  When she finds her left hand through the rails on her bed, she becomes afraid, perhaps because she cannot easily guide the hand back out.  That causes a cry of distress.  Other times, she laughs at some thought.  Most often, though, what I hear is her labored, open mouthed breathing.

Which in its forceful expression of life is a welcome sound.

Once up, I greet her and assess how much work I will have to do to ready her for the day, and then do whatever is necessary.

On the other six days, I would then effect Carol’s transfer to the chair, and head into the kitchen for breakfast.

That is the first tangible indicator that we are in Kyle’s world.  Previously, I would just go myself into the kitchen to prepare Carol’s breakfast and then bring it back to her and serve it to her while she remained in the bed.

But we’re talking about Sunday.

On Sundays, I throw some clothes on, leave Carol in her bed, get in the car and drive the four and a half miles to the market where I buy her blueberry muffin, and, if I am lucky, the Sunday Times will have arrived, and I will pick that up as well.  If not, I resign myself to reading the paper online, and head back home.  All of that takes about fifteen minutes, a brief enough time to leave Carol in the care of the dog.

Back home, I now move Carol into the chair and then wheel her to the kitchen table.  Her breakfast is the same as other days—melon or banana, breakfast sausages, juice—and the muffin in place of the usual toast with blueberry jam.

And because it is Sunday, after serving breakfast to Carol, and then feeding the dog, and letting her out for her morning constitutional, I toast a frozen bagel, which I had left out to defrost before my trip to the store.

For me, a bagel on Sunday morning is a requirement.  Even a frozen bagel.  Fortunately, the market stocks a product that claims to have been baked in New Jersey, and is actually an almost acceptable substitute for the freshly baked ones I grew up on.

The radio is tuned to Sunday Morning Baroque while we all eat.  When we’re done, I wheel Carol back to the living room, and turn on the old boom box sitting on the piano away from the interference of the cordless phone so the music can continue into the room with us.  I read the Times if I have it, or leaf through the Sunday edition of the local paper if I don’t.  I’ll get to the online version of the Times a little later.  When Carol settles back to sleep in her chair, I wheel her to the bed and transfer back into it.

And thus is our Sunday morning.

In Kyle’s world.

Which is different in the fundamental way that Carol eats breakfast in the kitchen, as do I.  We are functioning in a way that resembles our pre-dementia life.  The chair makes this imitation possible.

It is one more stay against the inevitable conquest of the disease.

And I am very happy for it.  Carol, too, seems more alert and more of the present moment.

The dog has not offered her opinion.  Wherever we eat she waits for something to fall to her on the floor.

Sometimes I am envious of a life governed by such simplicity.

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The Tale of the Piano

Thursday night.  It’s been a few days since I had the time and energy to write.  It’s not that late, but I don’t feel particularly energetic.  Today was active, beginning with the arrival of our piano tuner, followed almost immediately by my usual lunch, this time with three of the four attending.  A little rest when I came home, then supper preparation and into the evening.

Where last I left off, I was starting to talk about our piano.  I’ll pick up that thread.

Early in our marriage, our finances were, to put the matter gently, strained.  I knew that Carol very much wanted a piano.  She grew up with one in her house, her mother played, and she herself learned on it.

Not being able at that time to afford a piano, I instead bought a refrigerator magnet in the form of a grand as a promise that some day we would have an instrument, most likely not a grand, but a serviceable one that she could play.  Eventually, we reached the point where our finances permitted the purchase of a used Musette, circa approximately 1930.  It offered a nice cabinet and matching bench, both featuring spindles and curved legs that somehow, at least to me, suggested something musical.  And it produced  decent sound.

Carol happily began reacquainting her fingers with the keyboard, working on, I recall, the Moonlight Sonata and Pachelbel’s Canon.  I enjoyed listening to her play and to see how happy she was.  We started lessons for our daughter.

The piano moved with us to Michigan.  However, we did not hire a piano mover  Rather it came along with the rest of our belongings.

It did not survive the trip well.

Which leads to the particular piano tuner who arrived this morning to work on it.

Will pick this up next writing session.  I think it is leading to something good.

Sunday night near midnight after a cool and rainy weekend.  The weather cannot seem to make up its mind as we slide into June.

Where I left the piano story off, the instrument was installed in our new house awaiting to be tuned after its thousand mile trip in the moving van.  However, the tuner we hired declared that its sound board was now cracked, and he could not tune it.   Somehow we managed to get it into the garage without having made a decision as to what to do with it.

Carol still wanted to play so we purchased an electronic piano.  She never liked its sound although I enjoyed its ability to emulate various instruments, such as a harpsichord.  That was not enough to keep it so we gave it to Carol’s sister.

I am compressing time to keep this moving along to its point, which I hope to reach before I forget what it is.

The piano from New York remained in the garage as we still neither came up with a plan for it nor felt particularly motivated to resolve the situation.

Until we needed that space in the garage.

Rather than figure out how to get rid of it, sell it, junk it somehow, whatever, I decided to revisit the question of whether it could be made to play in tune.  To that end, I got in touch with local jazz pianist Jeff Haas and asked him who was the best available tuner.  He recommended Brant Leonard, the tuner who came a few days ago to once again work on the piano.

When he first came years ago, he checked the piano in the garage, declared that, of course, he could tune it, it was just a question of getting the tension on the strings right. My recollection is that he then, by himself, moved the piano back to its original location in the house.

The piano, though, remains difficult to keep in tune, primarily Brant says, because it sits in front of baseboard heating, which dries its wood every winter, loosening the pegs that hold the string wires.

And there really is no other place in the house to which it can be moved.

Now, we are getting to the point of this story.  Why did I, knowing how difficult the piano is to tune, and that I will not be able to keep it in tune over the winter without heroic, and at this time, ridiculously difficult, effort that involves sliding it out of its place every morning to fill up the humidifier that will keep it from drying out, and there is no doubt  that I will find that chore too burdensome as I did last winter, and very likely will not do it–why in view of all that did I arrange once again for Brant to tune it on the same day he was tuning our neighbor’s piano?

True, as long as he was coming out here, and since he charges travel time, we could split that part of his bill and both save a little money.

Which begs the question as to why I would want to tune it.

Carol of course is not going to play it.

I can play a little.  I had a couple of years of indifferent lessons when I was about ten and much more interested in playing ball in the streets than practicing the piano.  Still, I was always a good sight reader, as my teacher so many years ago declared while suggesting that I should try practicing between his lessons.  With some effort I can still read as long as things don’t get too complicated.

Getting too late to continue.  Will try to finish this section tomorrow.

Tuesday night.  Yesterday left me with no energy to write.  The morning was ordinary enough, but then I had an appointment with the dermatologist in the early afternoon.  She saw spots on my head that could have been new, or the remnants of those she had removed some time ago.  To be safe, she hit them with liquid nitrogen producing an effect very much akin to having an axe cleave your skull.  I went home with a serious, lingering headache.  Rested for a while, and then Kyle came for what was to be his last session.  He said we had a few paid sessions left, and he thought it prudent to save them, particularly in light of his conclusion, to which I assented, that he had done what could be done to that point but other circumstances requiring his assistance might come up.

Back to the piano story.  I have to add, as memory now insists, details in this evolving tale.  Early on in dementia’s attack on Carol, when we had no clear idea of what we were dealing with, when we both believed she was just suffering the after effects of chemo, which would wear off in time, she very much wanted to resume playing the piano.  But she was having difficulty remembering how to find the right keys.  That should have told us we were dealing with something quite serious, but we were ignorant, perhaps willfully so.  She tried taking lessons.  They didn’t take very well.  We stopped by a music store in town to get sheet music with which she could practice.  She was thrilled, telling the owner of the shop that he had given her back something precious.

But he hadn’t of course.

She still couldn’t play.

With the piano again in tune thanks to Brant’s wizardry, I sat at the keyboard from time to time seeing if I could learn to play Beethoven’s Waltz for Gertrude. Which, I have learned, Beethoven probably did not write.  No matter.  It seemed within my limited reach.

I played it.  Sort of.  After a while I could read the notes and connect them to the keys and I liked the sound.

I was kind of making music.

Carol could still hear when I hit a wrong note, and she would not hesitate to tell me.

I think I can now bring this meandering tale to a focus and to its point.

To do so, I have to answer the question already posed as to why I, at this late date, had this failing piano tuned yet one more time.

I believe the answer is composed of several threads, one of which is most important.  First, I still want to work on Gertrude even though I have little time or energy for practice.

Second, and this is getting closer to the main thread.  Building on my interest in playing, even badly, I am doing something very specifically for myself.  Carol is unaware.  She does not point out my wrong notes.

Third, as a corollary, the tuned piano represents a kind of transition, a bridge from the Carol past to the Steve future.  It is both a reminder of Carol’s attachment to the instrument she can no longer play and a glimpse at my life ahead.

When I will make decisions looking forward rather than back.

To be clear, I do not envision developing  a serious interest in playing the piano.  I may never tune this instrument again.  And if I don’t I won’t replace it either.  That decision most likely will mark another step in the process.

The process of leaving behind the then, moving through the now, into the new future.

What is clear, though, is that I will carry into our past into that future. That will be a mixture of necessary pain sweetened, I trust, but also a little comfort.

Note: since I drafted this post, the piano has again fallen out of tune: the E above middle C is seriously out.  The piano is well on its way to becoming no more than a piece of furniture.

A stubborn reminder of what was, and an indicator, perhaps, of what will not be.

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Music Hath Charms

Late Wednesday afternoon.  Kyle will be here within the hour.  We are nearing the end of Medicare supported visits.  Had a brief discussion last time about continuing his therapy on my dime.  I don’t know if that is practical.  Carol has made such good progress under his care, but it is also possible we are nearing the ceiling of what he can accomplish.

The disease will win out in the end.  The only question is where or when that end is.

I am not feeling perfectly well today.  Even a restorative nap has not fully recharged my battery.

I will soldier on as I have always done.  I have experienced very few debilitating illnesses that prevented me from going about my business.  I had the chicken pox as a young adult and that kept me home from my new teaching job for about a week.  I have spent one night in the hospital when two coronary stents were inserted.  There were probably a few other occasions that do not come to mind but I have been remarkably durable, retiring after thirty-five years with most of my sick leave unused.

All of this is said in the context of my now self-defined identity of caregiver.  More than at any other point in my life I cannot now afford to be sick to the point of becoming unable to function.

Kyle has just arrived.  His arrival times are always approximate.

Saturday night.  I have been too tired the past few days to attend to this writing.  I think I might be dealing with a bug.

I’ve got my Simon and Garfunkel Pandora station streaming in my ear buds.

That is because a little while ago I played the CD of the duo’s concert in Central Park.

I need to make two points about my choice to play this music.

The first is general concerning music, the second is particular to that concert.

Several days ago, as we were having breakfast, for some reason I took note of the small Sony radio sitting on the butcher block top of the wheeled cabinet that serves as an island in our kitchen.  That radio has been there literally for years although we did not turn it on that often, probably mostly to listen to the Prairie Home Companion while eating Saturday evening dinner.

But on this morning, I turned it on and fussed with the tuner until I found the classical music station from Interlochen.  I listen to that station on my car radio, but for whatever reason not in the house.

I don’t know what motivated me to turn it on that morning.  I will say I am embarrassed I did not think to do so sooner.  I knew, or at least was aware in a dim kind of way, that music is reported to  penetrate the fog of dementia.  In fact, one aide some time ago asked if she could play music, and if so, what did Carol like.  I suggested blues, particularly of the Delta variety, and dug out a couple of CDs.  I had plugged in an old boom box on the end table next to the sofa so I could play audio books for Carol.  She listened with some interest to her favorite book, To Kill A Mockingbird, but others did not keep her interest.

We tried a blues CD.  Carol did not listen, and we abandoned that idea.

However, her response to the classical music on the radio was positive.  I saw her nodding her head to it, and changing her facial expression to reflect changes in the music.  Then, I remembered her father loved classical music.  He had a large, old fashioned stereo system set up in the dining room, and I was aware that he and Carol’s mother attended concerts at Interloochen.

I don’t know for a fact, but it is likely he played classical music on that stereo with some regularity.  What I do know is that music was prominent in Carol’s family.  Her mother played the organ for her church for fifty years, Carol’s sister plays violin for that same church, and others in the family play.  Carol herself had years of piano instruction.

So it is not surprising that she responded to the somewhat tinny music coming from that little Sony radio.

I’ve been turning it on every morning since.  And when we move into the living room, I tune to the same station on the boom box, and let it play all day.

Which takes us a step away from Simon and Garfunkel.  Let’s get back to them and their famous outdoor concert.

At dinner time today, the programming on the radio turned to a nightly show that features a lot of analytical talk about the music being offered.   Wanting to continue listening to music without the talk, I sorted through a pile of CDs next to the television.

Where I found the Simon and Garfunkel CD.

And now the particular reason for pulling it out of the stack instead of something classical like a Bach compilation that was also in the pile.

Carol had attended that concert.

That was in 1981 before she entered my life.

She often spoke of the experience, how far from the stage she and her companion was that they could not really see much, and how the music filled the park.

I asked if she would like to hear it.

“Yes,” she said.

And she listened with head nods, foot wagging,  smiles, and at least one laugh at one of the lyrics.

So, yes, music apparently does penetrate, does, perhaps, wake up some memories.

And we will continue to listen.

Past midnight of Memorial Day, the end of seventy-two hours of almost complete isolation, broken by one telephone call I initiated, one greeting to the owner and clerk at the market on my Sunday morning trip to pick up the Times and Carol’s blueberry muffin, and two brief conversations with neighbor Brad.  The first occurred in the street after I had picked up the mail and then strolled over to him where he was weed whacking some brush.  I wanted to follow up on the suggestion I  had offered concerning his getting in touch with our piano tuner to service  the used instrument they had just obtained at a fund raiser. The second, brief, conversation with him during the weekend was occasioned by his stopping by with some food from a holiday barbecue at their church attended by a number of members of the historical society who sent their regards to me and Carol, a most welcome and unexpected visit.  Even the telemarketers seem to have taken the weekend off.  I initiated the one  telephone call, phoning that same tuner to see if he could do our piano after Brad’s.  He called a couple of days later to say he would.

These arrangements concerning piano tuning lead naturally back to the reintroduction of music into our household.  I now have the radios, one in the kitchen, the other in the living room, tuned to the Interlochen classical music station from morning to night.

I cannot be sure how consistently Carol listens, but sometimes it seems her head or her hand moves to the rhythms.  In any event, her mood has been more even keeled, and I attribute, however tentatively, that effect to the constant music.

The choice of classical music was a natural for me although, in truth, I like many genres.  At the moment, KNCX a jazz station from Seattle is streaming into my ear buds.  I listen to folk, and to classic rock as well.

But classical music, I believe, is a better choice for Carol in her present condition.  True, she used to love Motown and blues, as well as sharing my interests.  However, without any research into the question, I am hypothesizing that the more complicated structure of classical music engages her brain more fully.    That, plus the possibility of the music reawakening the auditory memories of the music she heard in her house growing up.

It would be foolish  to suggest that Carol’s listening to music can stay the progress of her disease.  In spite of my generally optimistic attitude, I long ago gave up on the idea that anything less than divine intervention, which I confess is more than a little unlikely, would stop that progress.

All that can be done through medicine is try to slow the inevitable deterioration, and as with Kyle’s introduction of the tilt chair, improve the quality of our lives.

I don’t know if the music now playing pretty much all day every day in our house will have the salutary effect of stimulating brain activity, and thus slow down that deterioration.

But it certainly seems to have a positive impact on her mood.

And mine as well, as all my life I have listened to music whenever possible.

As William Congreve  opined centuries ago, “Music hath charms to soothe a savage breast.”

I don’t know about the “savage breast”–often misquoted as “savage beast”–but its ability to charm in a variety of ways is palpable, a wonderful gift I will make  a permanent resident of our household through these difficult times.

There is more to the relevance to our situation of the story of our piano and piano tuner.  Will explore that in the next post.

 

 

 

 

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Being a Caregiver

Tuesday night.  Seattle based jazz station streaming into my ear buds.  Went into town for weekly shopping but with first stop at UPS store to send back an incorrectly ordered beard trimmer, one that did not have an adjustable length setting option, and while there also shipped a copy of my latest book to my old Fort Salonga friend, from whom I just received a stack of his films along with a novel.  Also sent to Danielle a Tee shirt decorated by grandson Brandon with images of cats, intended for Carol.

Sometimes a day is punctuated by everyday chores, such as arranging for a plumber to come fix a leaky kitchen faucet, or for Carol’s hairdresser to come out to cut her hair.  And sometime, a chore is less ordinary, such as spending an hour on the phone, mostly on hold listening to all the wonderful services Michigan has to offer, while working my way to a person in the Secretary of State office who will authorize re-sending the forms necessary to provide Carol with a personal identification number, which can be used in lieu of her expired drivers license number for the next time I will file our income tax return.  The form had apparently been sent in late March when I first became aware I would need one such down the road, but it never arrived.

Doing these mundane matters provides a small sense of accomplishment that is largely absent from my life these days.  A very welcome glimmer of normalcy movement, however inconsequential, toward something a little better or as in the case of the personal identification number, necessary.

Before finishing for tonight, as I am tired, I will record one small but not insignificant moment from a couple of days ago and contrast it with a larger non-event.

First the small one.  I was working on my laptop in the late morning researching markets for my writing.  A Google search had brought up a useful list and I was exploring it for a while.  Absorbed as I was in this task, I lost track of time.  I happened to look up from the screen and saw Carol stirring in her bed.  I glanced at the clock and saw we were already a little late for lunch.

I got up from my chair, walked over to Carol, and said lunch would be ready soon.  I added an apology, saying “I was just trying to make us rich and famous, and if not famous, I will take rich.”

She offered a genuine laugh.

Once again, for that brief moment we were together in the here and now.

I knew it would not last, but I savored it.

Now the larger.

Mother’s Day.

How to deal with it.

I could, of course, just ignore it.  Carol would have no idea that it had arrived.  This was the same kind of dilemma I faced with the Kentucky Derby the day before.

I had thought of buying a half dozen roses as I had for her birthday in January.

But somehow that idea didn’t sit well with me.  The best explanation I can offer for my discomfit was not so much that it would probably be a waste of money, but rather that it was a futile attempt to continue a fiction, to pretend that we were still living in a time of celebrating such holidays together that was most definitely gone.

I had mentioned this situation to the aide on Friday.  She offered the very practical suggestion of cutting some of our daffodils, now in full bloom  I believe she is used to being quite frugal, and so was probably drawn to this solution by it being cost free.

At first that idea did not appeal to me.  But after a while I came to see it as a  way of doing something I was comfortable with, probably because it was both fitting and new as I had never cut our own flowers to mark an occasion, although I seem to recall bringing in some of our yellow roses last season.

Sunday morning I did the deed, went out onto the front lawn to the daffodil bed and snipped off enough to fill a vase I had found in a closet.  I placed the flowers on the kitchen table and wheeled Carol in.

I don’t think she actually saw them although I placed them right in front of her eyes.

Yet, I am content that I had tried.

That afternoon our daughter called.  Apparently, she had dealt with the issue from her perspective.  She knew from her own experience that her mother could no longer respond to her as her mother.  But she felt she should call.

So she did.

We had a long, warm and useful conversation,. I filled her in about how Kyle was working with Carol to get her on her feet, at least in a limited way, but mostly we talked about other things, how for the first time in sixteen years I actually happened to look out of the kitchen window when the flatbed truck arrived carrying the bees imported for the orchards across the road, how there was an article in the paper concerning a study of the feasibility of restoring passenger train service to our town, and other such.

It seemed right on Mother’s Day to have a good conversation with our daughter, who after all, is the reason the holiday has any significance for us.

Last note.  As I got into the flow of these ideas, I did not hear the music coming through my ear buds.

I hear it again now as it pauses to provide time for a news update concerning the unrest in Gaza.

The world will be heard, even her in the bubble that is Old Mission.

Thursday night.  Carol asleep.  I am tired.   It seems I am always tired these days.

Which leads me to the idea that has been gestating in my head for several days.  I’ll see what it has to offer, or at least start so to do.

I remember hearing some time ago that people in my situation, that is caregivers, become just that, to the exclusion of what they had been before.

What does that mean?

Well, it opens the broader question of how do we think of ourselves, how do we define ourselves, how, in effect, would we answer the question What do you do?  That question is similar to, but more provocative than, Who are you?

The who are you question can  be answered in a number of fact based ways depending upon the circumstance in which it is asked.  The question might simply require providing a name as in arriving for an appointment.  Or perhaps its answer must place you in relationship to some other person, as at a social situation at which people who don’t know each other, but do have some common purpose for being at the event, introduce themselves to each other, Oh I work with so and so.

In contrast to those simple factual questions and answers the What do you do? question demands self-definition.  The answer that seems to spring to mind is to indicate what we do for a living.  We define ourselves by our jobs.  I am a lawyer, I teach, I own a restaurant, I am a housewife, or a house husband, I have a soy bean farm.  Whatever we spend most of our time doing, or perhaps better expressed, whatever we have to do.

To indicate the centrality of this kind of response, an answer such as Oh, I am retired, usually elicits the follow-up, Yes, but what did you used to do when, in fact, you had to do something.

That’s a start to looking at the point with which I began.

Do I now say I am a caregiver?  And similar to a retired person, do I add but I used to be a college professor, or after that was no longer true,  say I was a writer?

A start.  Weariness is stopping the flow.

Sunday night.  I’m looking across at the tilt wheel chair that has made such a difference.  The leg rests and the left arm rest are off, removed to make transfer easier.   I have WSHU streaming some nice music into my ear buds.  Above the music I hear Carol’s open mouthed sleep breathing.  On the floor to the right lies the sleeping dog offering an occasional doggy snore.

Let’s see if I can pick up the thread and transition back to the question of what am I.

Doing the arithmetic 24X7 tells me there are 168 hours in a week.  For all of those hours, minus the nine of relief, or to be precise for 159 of those 168 hours, I am Carol’s caregiver.  That’s a whole lot more than the traditional forty hour work week.

Of course, one could quibble and say, at the least subtract sleep time.  I will give a qualified agreement and reduce 56 hours to account for sleep at eight hours night.

That’s a qualified concession because even when sleeping I am still on duty.

I sleep near Carol’s hospital bed in part because I want still to be near her, to hear her breathing, or the occasional sleep talk she offers.  But I stay close because I want to be sure insofar as I can that I will know if anything medically significant occurs so that I can respond to it.

All of this talk of numbers is natural to me.  Focusing on quantifiable facts is one of the ways I mediate my interaction with the world, which makes more sense to me when numbers are overlaid onto the flow of events and perceptions.

But I am also making a point, however labored.  Nothing I have ever done in my life up to this point demanded such a commitment of my time.

On that basis, if one identifies oneself by what one does, and if factored into that what one does element is the time spent doing it, I am a caregiver.

More than I ever was as a college professor, or a writer.  Of course, as a husband or a father, I was on in those roles every minute of every day.  But just as clearly, I was doing other things at the same time.

Now as a caregiver, I am acutely aware  that I always have one metaphorical eye on Carol whether I am attending to something outside, running off to the store, or as now, as she sleeps, sitting perhaps fifteen feet away writing on my laptop.

To put an exclamation point on the point, I can say that I do not spend much time in my office upstairs where I could work on my newer, more powerful, more comfortably situated desktop computer simply because I would feel I was neglecting my caregiving responsibilities.

I conclude, therefore, that what I am now, more than the writer I still try to be, or the retired professor with continued interest in his fields of expertise I remain, more than anything else, I am a caregiver.

Not a job to which I had aspired, but one thrust upon me, and one I strive to do as well as I can for as long as I am able.

 

 

 

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Like Ocean Waves

After midnight Tuesday, up in my office on my desktop PC instead of in my chair with the laptop in the living room.  Came upstairs to use my good toothbrush and decided to write a bit on this computer.  Carol is comfortably asleep downstairs.  I have a little concern being up here because her last seizure a couple of months ago was silent.

I won’t stay up here too long.  I just want to get this next section started, and hope to be able to resume it tomorrow.

When I was growing up in Brooklyn, the Atlantic Ocean was a bus or subway trip of less than half an hour away.  My buddies and I would just wear out suits beneath our jeans, roll a towel up into our back pocket and make our way by public transportation to Bay 8 of Brighton Beach, down the shore from Coney Island.

I spent one summer when I was thirteen with my family in a bungalow in Rockaway.  Same ocean, just some miles east.

In short, I became very familiar with the ocean.  In particular, I learned, as a matter of necessity, how to handle the ocean’s waves.  The one thing you did not want to do was get hit full force by a breaking wave.  Those waves could easily knock you off your feet and under.

An unpleasant but not life threatening situation.

You learned to either go over or under the wave depending upon where you were standing as it approached you.  If  you weren’t too far out from shore where the waves would break, you would advance toward it and dive under it before it reached you and then you surfaced on the other side.  If you were further out where the wave was just starting to crest, your job was a little easier. You just went over the top of the cresting wave.

All of which is preface to the metaphor that has been sitting in my head since the Kentucky Derby on Saturday.

That’s enough of a start.  I can pick this up fairly easily when next I have the opportunity.

Friday afternoon in town in the library after a couple of errands.

Strange as it might sound, deciding whether or not to watch the Kentucky Derby this past Saturday caused me considerable stress.  This seems like a decidedly unimportant television viewing decision.

But it wasn’t.

Because it drew me back hard into the world Carol and I together had created and shared.

When talking about horse racing, or horses in general, I like to joke that growing up in the city my exposure to these large beasts consisted of the very occasional mounted police officer, the even rarer and perhaps unreliable memory of a horse drawn vehicle for a knife sharpening business, and much more prominently, horses of the wooden variety, such as those on the merry go round at an amusement park in Coney Island.

In the interest of historical accuracy, I will point out that I possess a picture of my young self, sitting uncomfortably on a horse somewhere on a family vacation trip.  My dim memory of that event is that I could not convince the horse I was on to move in the proper direction.

In short, that brief, unsuccessful close-up experience with horse flesh, did not do anything to change my indifference to horses and horse racing. That there are several race tracks in and around New York City including Belmont, home for the last of the triple crown of races, was a fact to which I paid no attention.

I do not know why horse racing didn’t register in my consciousness since I enjoy competition in almost any form.  It simply was not of interest to anyone in my family or among my friends or their families.  It is true that my first wife’s family, particularly her father, were serious followers of horse racing.  But I was never invited to share that interest with them, nor do I think I would have cared to.

I had no objection to following, or betting on, the horses.  I was just indifferent to them.

Until Carol changed that.

She grew up on a farm that still used work horses as indicated by a picture of her father with two such animals.  She had her own horse for a time, and spent a year in a private high school in Pennsylvania, which featured, among other things, training in equipage, including jumping.

When she lived in New York, her life was filled with a whole list of  new experiences and challenges, none of which involved horses.  It is possible—my memory is uncertain—she might have taken me to a horse show somewhere on Long Island.  I know we attended such an event.  I just can’t be sure where.  Long Island, particularly in the upscale north shore communities, does have the kind of horse owning culture associated with old money.  So the show might have been there.

But when we moved to rural Michigan, we were in serious horse country.  Our neighbor to the north until recently kept a couple of horses in a fenced area behind his house.  The owners of the house we bought had a horse stabled in the building we converted into an office.  Carol’s brother and his wife had their own horses and also even now make their barn and pasture available to renters.

Respite time over.  Will try to continue, perhaps tonight.

Monday night.  Kyle had a tough session with Carol who was non-co-operative.  He cajoled her onto her feet several times.

Ironically, she awoke from a short nap after he left in a remarkably good mood, alert state of mind and with a healthy appetite for the pizza we were sharing with Ryan.

Kind of a microcosm of the maddening ups and downs of this disease.

I’ll try to pick up the thread I dropped a couple of days ago.

All of my ruminating about horses is the context for my dealing with the Kentucky Derby.  Doings so reminds me, if such is necessary, of another indication of Carol’s love of horse racing,  So here it is.

Some years ago, in fact I believe not too long after we moved here, Carol took herself off to a writers retreat.  Three details remain in my memory.  First, the Subaru dealer in town managed mess up a routine service so that we deemed it unwise for Carol to take the car until the problem was resolved.  That fact also helps date this incident within a year or two of our arrival here in 2002 when we were still relying on the dealer for service.  Carol rented a car and went off.

I can’t remember where exactly the retreat was, perhaps southern Ohio, but it was not far from Louisville.  That is the second detail that is clear.

Which leads to the third.  I flew down to join Carol, and together we went to Churchill Down.  It was off season.  So no race, but she thoroughly enjoyed walking about the grounds and building.  I recall we also took a boat ride on the Ohio.

My musings about the Kentucky Derby takes me back to the metaphor I had begun to develop built on my recollection of navigating ocean waves.

I simply could not make up my mind first whether to watch it.  I knew we could not talk about it, at least in any meaningful way.  Perhaps I mentioned it.  I don’t recall.  If I did there surely was little response.

Sitting in the green room with the television remote in my hand, I was paralyzed by an indecision that was rooted in the heavy wave of sadness that had rolled over me.  It was the same kind of wave I experience regularly when I am forced to confront a reminder of what we used to share.

These waves can and do crop up without warning. There are hundreds of objects in this house that can be the occasion for one of them to arrive, uninvited and unwanted.  I live among them.  Most often they cause nothing.  But then something, the silly sign in the upstairs bathroom announcing baths for five cents, or the laptop sitting idly on the desk we bought and set up in her now unused office, the nightgown hanging on a hook in the bedroom I enter only to retrieve my clothes, the salmon rub she insisted we buy still on the shelf in the cabinet in the kitchen, these and all the others I encounter every day every once in a while raise that wave of sadness that engulfs me.

Unlike the ocean waves, there is no learning how to dive under them or ride over the top of them.  They will sweep over me.

But also unlike the ocean waves that smash you with tremendous force if you fail to implement one of the avoidance maneuvers, knocking you around and down, these waves of sadness instead are almost gentle, yes gentle, but not in a soothing way.

There is no physical beating.

Just the feeling of being enveloped in a gray mist, not black enough to lead to despair, but thick enough to create the physical sense of its cold embrace.

The moments pass.

But there will be another and then another, on and on, like the endless repetition of ocean waves against the shore.

 

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A Useful Fiction and Real Progress

Friday afternoon, In the main branch of the library, looking out of the window at the Boardman Lake, out of which flows the Boardman River, which, in turn, empties into Grand Traverse Bay a mile or two from here.  I can see the old railroad tracks on a  swath of green.  Beyond that is a small parking area bordering the lake.

Altogether a charming view.  I cannot imagine a better spot on which to plant a library, redolent of history and natural beauty.

I am getting more practiced transferring Carol from bed to chair and back.  She accepts these movements without too much opposition although she still exhibits moments of panic as she is between the two.

When I came home from my shopping on Tuesday, the aide told me that she had great difficulty effecting this transfer and that it took her and the trainee who was with her that day to get the job done.  That tells me that Carol was offering significant resistance because this aide is both physically and professionally competent.  She is the one who gives Carol her weekly bed bath.  In fact, she was teaching the trainee how to execute that task.

Perhaps it was all more than Carol was in the mood to accept.  And in spite of her dementia, Carol’s base personality remains very much in evidence, and that base has an ample store of toughness and independence.

The bad taste from that afternoon seemed to have spilled over to Kyle’s session the next day when even his best banter and blandishment could not elicit much cooperation.  He came with the ambitious expectation to move to the next step, which was to work with Carol so that she would handle a stand and sit transfer, whereby she would get off the bed into a standing position, turn ninety degrees and sit down into the chair.

He could not get Carol into a sitting position, which would be the precursor to getting her feet over the side of the bed.

She was having none of it.

Kyle did not push the issue.  That is one of his finest attributes as a therapist. He knows when to stop, something previous therapists did not seem to understand.  He said he did not want his voice associated with what seemed to be Carol’s memory from the day before.

So, he just stopped and said he would try again on his next visit.

My respite time is drawing to a close.  I will try to resume and round this off tonight or tomorrow.

Sunday night.  As per usual watched Masterpiece Mystery alone in the tv room.  The dog remained in the living room.

Kyle will be here tomorrow evening no doubt to try again to condition Carol into a stand and sit routine.

Whether or whenever he is successful, the presence of the chair has already had a positive effect.  For the most part, Carol and I are eating together at the table, either in the kitchen or the dining room.

Well, to be more accurate, we sit together, but for the most part I help Carol eat first, and then I turn to my own food.   But the point, as small as it might seem, is that I have been able to move past the mealtime fiction I have been observing particularly for supper when I set two plates on the dining room table.  Then, I have been bringing over the meal in service plates, and while sitting in Carol’s chair, fill up her plate with as much food as I think she will eat.  Having done that, I carry the plate over to her bed and serve her meal to her there.

For all these month, I have been doing supper this way, always setting the supper table for two.

But now when I do that, I bring Carol over in her new chair, and we do sit side by side at the table.

In the mornings, I had been eating my breakfast alone after taking Carol hers.  Now, we eat together at the table in the kitchen.

Lunch is still not settled.  Where Carol eats that meal depends upon how long she has been in the chair when lunch time arrives.  Sometimes, I may have decided it was time for her to be back in the bed.  And, in any event, she seems to have less interest in lunch.

Thus, these details, as trivial as they are against the backdrop of the larger picture, serve to lift my spirits.  On the one hand, I fully recognize that the course of her disease has not changed.  On the other, notwithstanding that fact,  they do manufacture another useful fiction that our lives sort of go on as before.

And those kinds of fictions are necessary.

Carol, on some level, seems to agree.

In the morning, I ask her if she wants to get into her chair and go to the kitchen for breakfast.

She says yes.  If she hasn’t articulated the word clearly, I ask again, and she repeat in a firmer voice.

The same holds for supper.

She tolerates my transfers into her chair with only minor upset.

Together, then, we both buy into this most useful fiction.

Tuesday morning.  Carol in her chair, dozing after breakfast.  I am snatching a little writing time before the aide comes and I go to town for weekly shopping.  Want to set down two tracks to develop: progress Kyle is making, and entirely unrelated thoughts prompted by Saturday’s Kentucky Derby.  The two are joined only by time, but I don’t want either to slip away.

After a non-productive session last Wednesday, Kyle arrived yesterday with his usual optimism and forward looking attitude. His plan, I thought at the time, was audacious, a big step from the slow, cautious approach he had been pursuing.  I’m guessing, since we didn’t talk about his thinking, that he saw last week’s problem as an aberration, a bump on the road, and he had determined to erase any trace of it by moving boldly forward.

He had decided to see if he could get Carol to stand.

Perhaps because I had been successfully managing the transfer process into and out of the chair for the last five days, by carrying her, or because the dosage of Busbar had been increased a little, or some combination, Carol offered less resistance to his initial efforts to have her sit up next to him on the bed.

From that position, he tried to lift her into standing.  That didn’t go well, so he switched to another strategy.  He transferred her to the chair.  Doing so placed her immediately into a solid sitting position.  He placed a walker in front of the chair, and tried to get her to grasp its handles.  He didn’t have much luck with that maneuver, so again he switched to another approach.

He removed the walker, stood in front of her, and then several times he lifted her onto her feet.  Later, he reported that although he was largely supporting her in these instances, to a certain extent she was putting weight on her feet.

A start toward her standing.

Perhaps with the support of the walker, or even on her own.

As  a kind of reward, he wheeled her out the back door onto the deck to enjoy the early spring weather.

Somehow, he had observed in the rear of the garage a piece of wood that had been part of a platform bed I constructed many years ago.  The piece had a flat surface and on one end a right angle lip of two or three inches so that when laid on the ground it formed a kind of ramp.

I no longer remember how it fit on the bed. But it turned out to be just about the right size to provide the ramp he had previously envisioned as being helpful in easing the wheelchair over the door sill and onto the deck.

He marked the piece to indicate its proper width,and indicated he would find a saw to cut it.  I told him I could manage that, and took the piece back into the garage where my ancient radial arm saw was available for the job.

It did most of the cut.  But the lip raised it too high so that the bottom of the motor prevented the cut from being finished.  I dug out my circular saw, finished the cut, and brought the piece back out to Kyle.  He placed it against the outside of the doorway and nodded his satisfaction.

A little later, when we had sat outside for a while, he tested this makeshift ramp and judged it adequate.  It is difficult to assess how much Carol processed what was going on.

But she did seem to enjoy the sun on her face.

We brought her back in, and I kept her in the chair, for Ryan was due shortly for his weekly visit.  Kyle left, Ryan arrived, we chatted, and then I drove to town to pick up Chinese take-out.  Carol ate with decent if not great appetite.

A most successful several hours.

It did not halt the progress of the disease.

But for the while it drove it back into the dark corner out of which it had risen.

I haven’t forgotten that I want to deal with thoughts raised by the Kentucky Derby. Will get to it next.

 

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The Chair

Friday afternoon in the main library in town.  This is a lovely building constructed some twenty years ago, and it is bustling in a quiet kind of way, with a variety of patrons.  That variety is the primary reason I drove the extra ten or so miles past the small community branch to which I usually go.

Sitting across from me is a Native American man, who judging by the plastic trash bag tied to his suitcase, is homeless.  A young woman who had been working industriously at a neighboring table, just packed up her things, including two computers, walked over  to this fellow, and handed him a couple of bills, two twenties, I think.  He demurred, saying he was fine.

But he took the money.

He mostly sits, eyes sometime closed, but also takes out his phone every once in a while.  Perhaps he is expecting a message.

It is good to get out of my bubble and see how the rest of the world is getting on.

He has moved to the table vacated by the young woman.  Apparently on it there is a port for charging a phone, as he has plugged his into it.

A colleague years ago told me that he believed I am a people watcher.

Of course, I am.  That is why I write fiction.  Perhaps this man, and that woman, and their brief interaction will wind up in a story.

Carol is having a pretty good day.  She ate her breakfast with some enthusiasm and seems less drowsy.  Last night, as well, she finished off her supper.

Perhaps her body is adjusting to the new meds.  If so, I am relieved.  I don’t know much about precisely how her disease wreaks its damage but I am on the lookout for lack of energy and appetite.

The Native American man has just walked over to talk to a man at another table.  They seem to know each other.

There is an obvious train whistle coming through this building’s windows. The depot building for the Pere Marquette train line is nearby.  Google tells me that building, dating from 1927, now houses a microbrewery establishment.  The train whistles emanate from freight trains.

And I just heard another train whistle.

Native American man now hunched over his phone.

I have clearly been distracted.  But I am not at all unhappy.  In fact, I am delighted to have broken out of my isolated little caregiver’s world.  Even more so to learn something new about this town, after living for sixteen years fifteen miles up the road from it.

These distractions, however, have taken me away from writing about what will be happening on Sunday when Kyle arrives with the tilt wheelchair and we start the process that might result in a dramatic change to that world in which Carol and I have been living.

Monday night after an exhausting but quite productive day.  It is approaching midnight, and I have just enough energy to write what will amount to a head note to be developed at the next opportunity, perhaps tomorrow night.

So with that limited objective in mind, I can state that this day, the last in April, was the best in a long time.  First, Carol ate three good meals, the last being most notable.  Second, I managed to get to town to deal with my own medical problem, a highly irritating infection in my left eye.  Third, Kyle devoted his session to making an adjustment to the chair he had dropped off yesterday.  Fourth, he got Carol into the chair, and wheeled her out onto the deck.  Fifth, Ward, Carol’s younger brother and father of Ryan, expressed his desire to stop by this evening.  Sixth, he joined us, Carol and me, and Ryan for dinner, with Carol in her new chair sitting at the table with us.  And seventh, I managed, with Ryan and Ward standing by, to lift Carol out of the chair and back onto the bed.

All of this is noteworthy.  I will decide how to shape it when next I sit down to write.

Tuesday night.  Time to pick up the thread where I dropped it.

Before breakfast I debated with myself whether I should transfer Carol to the tilt chair.  I had performed the reverse action last night, transferring her into the bed while I had help available if needed.

This morning I would be on my own.  Another complication was the fact that today’s aide who would be giving Carol a bed bath would be arriving in a few hours after breakfast.  Perhaps, I thought, I should take the simpler route and wait until I returned from town later and then do the transfer while the aide was still here.

I asked Carol if she wanted to get back in the chair, like last night, and eat her breakfast in the kitchen.  To my surprise, she said she did.

I decided to take the plunge.

My first task was to reassemble the pieces of the chair that I had removed last night so as to eliminate anything that would be in the way of moving her into the bed.  Those pieces included both leg rests, and the left arm rest.  With these pieces off when I positioned the chair next to the bed, there was nothing in the way.

They were now lying on the unused leg of the sofa.  I wanted to be sure that once she was in the chair, I would be able to put the pieces back on.

It took a little time to remember what went where and how.  Fortunately, my memory was good enough so that with only a couple of snags, I was able to get everything back where it belonged.

Then I took them off, and moved the chair into position next to the bed.  I made sure to tell Carol what I was about to do.

I put her shoes on so that if during the transfer process she put some weight on her feet, the shoes would provide traction on our slippery wood floor.  Then, modeling my actions on what I had seen Kyle do, I first swiveled Carol on the bed so her feet were over the side and touching the floor.  I then slipped my arms underneath her armpits and wrapped them around her as in an embrace.   I took a breath and lifted her up.

I’m not sure if her feet ever did hit the floor.  What I am sure of is that I was able to swing her into the chair.

She gave one little verbal complaint, but then settled in.  I put the various pieces back on, found the gate belt and secured it around her waist.

And very happily wheeled her into the kitchen next to the table.  There she sat while I fixed her breakfast.  She was alert and ate without much hesitation.  After she was done, I fed the dog, let her out, walked across the road to get my newspaper, and then prepared my breakfast.

Carol seemed to be getting drowsy, so I wheeled her back into the living room, tilted the chair back, and she was soon asleep.

The aide arrived, accompanied by a trainee.  I asked the aide if she was familiar with this kind of chair.  She said, no, but she knew about wheelchairs.  I showed her how I had prepared the chair for transfer.  And then left to do my shopping.

When I returned later, Carol was in the chair.  The aide said that it had taken the two of them to get Carol onto the bed for her bath, and then off and back into the chair.  Carol, they said, had stiffened her back, so that they had to struggle to complete the transfer.

That is not surprising.  All of this was new.  And she had just had the bed bath, which she is not always happy about.

I suggested, as Kyle had indicated to me, that through repetition Carol might become more comfortable with the transfer process.

We had supper at the kitchen table, and without too much stress, but not as smoothly as I would have liked, I got Carol back into bed, where she is now sleeping.

I expect with Kyle’s help I will refine my transfer process.  The whole idea is to avoid my having to bear her weight.

All of this detail probably obscures the significance of what has been accomplished these past couple of days.

Carol has been out of that bed for the first time in months.  She has eaten at the table.  She seems somewhat energized.

I know too well not to start thinking ahead.  This is all very well and good.  Perhaps it augurs a stay in the inevitable decline.

I will permit myself just a sliver of a hope that it might be a little better than that.

That hope, like a sliver of sunlight through darkening clouds, is enough to brighten my life, at least for a little while.

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