Sunshine and Clouds

Monday evening after supper.  Carol sleeping in her chair and I will shortly move her into her bed.  Just want to get started because I’ve not been able to find time and ambition over the weekend.

About a week or so ago, when Ryan had joined us for dinner and was still here as I was transferring Carol from the wheelchair to her bed, he witnessed something startling.

I was talking Carol through the steps of the transfer process as I always do.  When I reached the part where I say that with my help she will stand up and dance over to the bed,  at that point as I started to put my arms around her, but before I began an upward motion, on her own she lifted herself up off the seat of the chair.

And began, albeit unsteadily and uncertainly, to stand.

Let’s be clear.  Without a doubt she would not have stood all the way up without my usual help.

But she had remembered the routine.  She had responded to the verbal prompt.

The next morning, the nurse practitioner was here and witnessed the same thing.  She was shocked.

In a good way.

And so, I ask myself has Carol created a new memory?

If so, how significant is that?

OK.  Got it started.

Tuesday night.  Just glanced through a document from my elder attorney which detailed the loose ends that have to be tied up for the trust to be prepared for all contingencies.  I confess my earlier interest in the legalism of this business has evaporated and I did not focus as well as I should have.  I understand that guarding against unfortunate contingencies is necessary even if my eyes start to glaze as I read about them

Continuing my exploration of the possibility that Carol has formed a new memory.

Perhaps that is not accurate.  I could see what I can find out on this subject by doing the appropriate neurological research.

But I won’t.

In the first place, although I know well enough how to do research, I never enjoyed doing it all that much.

Second, I anticipate that the research would not yield a clear consensus since so much about this disease is not yet understood.

So, I prefer to observe and think about what I see.

What is clear is that in starting to stand during our transfer process Carol is responding to a verbal prompt.  If I don’t say anything, nothing happens.

I have not tried that verbal prompt in other situations.  I don’t want to muddy those waters.  I believe that if there is a new memory, it has a fragile hold in Carol’s brain.  After those first few successful responses, on other occasions she needed more encouragement from me to begin to stand.

Another complication has also to be factored in.  I sense a war going on in Carol’s head between her primal fear of falling that still causes her to push back instead of forward and up, and her occasional executive function overcoming that fear.  This conflict is most obvious at the beginning of the transfer process when either from the chair or the bed, I move her into a sitting position as a prelude to getting her on her feet.  Sometimes this step goes smoothly, but other times she pushes back hard.  If I resist that backward movement for a little while and verbally coax her into relaxing, she generally does. Once relaxed, I am guessing that her executive function has asserted itself.

If not that, I don’t know what.

The larger point, however, the bigger question, is whether or not her brain even so compromised by this disease has any recuperative possibilities.

Does she, in fact, as I asked at the beginning, retain the ability to make new memories?

Maybe a new memory is not right.

Perhaps her brain is somehow recapturing old information still stored there.

In either case, though, she is doing something she had not been doing for a long time.  That in itself is remarkable.

And cause for a little good feeling.  I am not foolish enough to expect much more, certainly not any additional improvement.

And as always with this disease, even good news such as this is also a stark reminder of how far down this road, from which there is no real turning back, we have traveled.

In the community library Thursday afternoon.  Unusually active, as librarian seems to be introducing a woman and her children to the layout of books on the shelves.  Perhaps the family has recently enrolled the kids into the charter school, opening in a couple of weeks, that is replacing the public school in this building.

Pure speculation on my part.  But I am a fiction writer, an observer of people, and I do this kind of thinking automatically.  And if I choose to write a story about this family, my speculation can be the basis, the skeleton I will have to clothe and provide inner lives to.

I have completed setting up my trust although certain chores remain to finish its implementation, such as designating additional beneficiaries for an insurance policy that lists only me now, and for our joint checking account as well.  The trustees will need access to these accounts.

I will take a deep breath before proceeding with those chores.

All of this business turns my mind inevitably toward my own end of life.  When my father died some twenty-five or so years ago, I became the last survivor of my nuclear family.  An image occurred to me at about that time.  I am riding up an escalator with nobody in front of me.  I suppose in my imaginings this was my family’s private escalator, and ahead of me, having already reached the top and then disappeared ,were my mother, sister, and father.

In that order.

They rode up and then they were gone.

For some reason, I do not look back to see who might be coming up behind me.  Perhaps I am being self-absorbed.

Or don’t want to say good-bye.

But for better or worse, my focus is straight ahead toward that top over which at some point I will go.

And then disappear.

Enough of that kind of dark thoughts this sunny afternoon as my respite period nears its end.

As I start to pack up my laptop, a young boy, one of those who had been introduced to the library, sits down at an adjoining table and looks disapprovingly in my direction, perhaps unhappy with the noise of my opening the case into which I will put my laptop.  He has a pile of books on his table.  For a few moments, standing in front of him is an older woman, who probably is not related, but just another patron.  Still, observing these old and young users of this library provides a kind of antidote to gloomy speculations.

Saturday night.  Not really going to start a writing session.  Just want to record one incident that fits my exploration of the workings or non-workings of Carol’s brain.  So here it is.

This afternoon in keeping with my recent commitment to exercise on the treadmill three days a week, one of which would be Saturday, I changed from my sandals into my walking shoes.  Carol was in her bed.  I leaned over her to tell her that I was going downstairs to the treadmill.

Then I said, “Now, you just stay here.”  I often say that as a kind of way to thumb our noses at the nasty fates that have made that statement ridiculous.  This time I added, “And don’t party like you usually do when I’m gone.”

Her face opened into a wide smile.

And she laughed.

Not a big belly laugh, but a very discernible laugh.

She was with me in that moment, completely, and as fully as she used to be.

I don’t know if I had a lilt to my step, but my upcoming exercise surely seemed less a chore, if not quite a celebration.

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Of Then and Now

Monday night.  Carol dozing in her chair after supper. Before long, I will transfer her into her bed for the night.  Time enough to start a writing session and see where it might lead.

I’ve said more than once that weekends, actually the period from Friday afternoon when the week’s last relief aide leaves until Tuesday afternoon when the first aide of the week arrives, that four day stretch is difficult for me, although I doubt Carol is aware.  Ryan’s Monday night visits for dinner shortened that stretch but he is working six full days in the restaurant during this summer season and comes to mow the lawn and perhaps join us for a meal when he can find the time, usually later in the week.

These last four days have been different.  Tomorrow is an election day for primaries for state and local positions, and the phone has not stopped ringing with political robo calls. One such, which my caller ID told me was from Hamatrak, Michigan, by itself caused the phone to ring four times.  I did not total the number of such calls but I am confident that twenty for today alone would be a conservative number.

The calls started slowly on Friday and crescendoed about two hours ago.  Not the kind of human interaction I would prefer.

Late Saturday afternoon.  Carol and dog sleeping.  Just finished the Times crossword puzzle.

Through open, screened front door comes the constant sound of traffic going up and down Center Road.  Most of the vehicles are clearly those of tourists heading back and forth visiting the lighthouse and Hessler Log Cabin in the park at the north end of the Peninsula. They are driving fast along this state road that passes by our house.  In the spring, they move more slowly because they are looking for cherry blossoms; in the fall, they also travel at a leisurely pace checking out the colors of the turning leaves.  Only in the winter is this road quiet.

Yesterday was our anniversary.  It came and went like all other days.  Not surprising.  Carol and I used to celebrate by going out to eat, usually at an upscale restaurant.  We didn’t swap presents, nor did we encourage our daughter to congratulate us, which, is, when I think about it, a kind of silly idea anyway.  Why would she be congratulating us?  For conceiving her?

Maybe I’m being too literal, so I’ll leave that point alone.

Because Carol has lost weight, she no longer wears the diamond ring I bought for her years after we married when finances permitted.  One day I found it on the couch cushion where she was then sleeping.  I figured out a way to have it properly sized by using one of those ties that can be adjusted to a certain circumference.  I wrapped one around her ring finger until it fit securely as I would want the ring to do.  I thought I would take it and the ring into a jeweler and have the ring downsized.

I gave up on that idea after a while, and just put the ring in a safe place.  Seeing her finger sans the ring bothered me, but not for long.

I did tell Carol that it was our anniversary.  I do not know if she processed that fact.  I could not see any obvious reaction.

Some motorcycles just roared by to provide a different external audio.  If I were to keep track of the traffic, I would guess this would be one of the busiest days of the year.  There is barely an interval of quiet.  I need to draw on my ancient city mind set to block it out.

I have been thinking of writing again about what seems to be the central fact of my life now.  The thought was prompted, as it usually would be, by the appearance of something,  an object, innocent by itself, but emblematic to me.

In this case, the thing appeared when on my way into town I glanced in my rear view mirror and saw hanging from the mirror in the car behind me the kind of handicap placard we used to display, and which I still have in the brown paper bag into which I loaded stuff from the lease car I turned in last December.

There was no point in installing the placard in the new car so it remains in the bag.  Maybe I should just toss it.  Somehow, however, that act strikes me as being significant in a way I don’t feel like confronting.

Time to think about preparing supper.  Will pick this up later.

Sunday night. Watched a repeat of Sherlock on PBS.  Forgot how the series had fallen in love with special effects to reveal inner turmoil.  Find the technique somewhat distracting and irritating.  I prefer my Sherlock straight up.

Will try to pick up where I left off and see how far my limited energy tonight will carry me.

Seeing that handicap placard in the car behind me, and recalling the one we still have now in a paper bag rather than hanging in our car encapsulates the then and now mixture ever present in my mind.  However, that binary formulation is a little simplistic

Because the then, itself, is composed of various layers.  There is the then of the time before Carol got sick.  Objects reminding me of that then are all over the house, in her towel still hanging on the rack next to mine in the upstairs bathroom where I shower, in her glasses, which just the other day I took up to her dresser after they had been lying on the cocktail table in the living room for the past year and more since it became clear that they were no longer needed, in objects small like those and large like the piano she used to play.

I could make a very long list of such objects.

Or in the occurrence in some context of a particular word that resonates because of its association with the Carol of then.  For example, in a crossword puzzle the answer to one of the clues was “gist.”  Whenever Carol was trying to puzzle something out, she would say she was after the “gist” of the thing, as though she was seeking the hard kernel of fact or truth hidden somehow from her grasp.

Or a different kind of word association, such as reading in the daily newspaper’s column that gathers tidbits from a century ago, the name of Frank Edgecomb.  He was Carol’s grandmother’s first husband.  His family built the farmhouse in which Carol grew up.  He was not, however, her grandfather.  He died in the great influenza epidemic, and Carol’s grandmother remarried the man who became her grandfather.

But Frank was a presence in our house.  On the shelf over our bed is a book I bought for Carol about that influenza epidemic, and there is a picture of him on a shelf of the bookcase in the bedroom.

Perhaps more poignant are those things that mark the responses to the increasing debilities of her disease, such as the handicap placard, but also the grab bars in various places in the house, the walker, the shower stool, and the shower bench, the white plastic ruler sitting on the little table between the chairs in the green room, which we thought would enable her to keep her eyes focused on a line of text so that she could continue to read, these and others like them, signposts along the way toward the hospital bed in which she now spends a good portion of her life

Will try to wrap this up next session by moving into the now into which these objects intrude like guests overstaying their welcome

Tuesday evening after an eventful day.  The morning was ordinary, rising, breakfast, checking in with the world large and small.  Once the relief aide arrived, however, things got ta little more intense.

I had squeezed in a necessary appointment with my attorney to sign the papers setting up the trust.  Of course, that bit of business took longer than I had anticipated as I should have known would be the case based on previous life experiences in which I had spent  time conducting legal business

After leaving the attorney’s office, I still had the week’s grocery shopping to do.  Although I accelerated through that task I could not find, as usually I did, time for lunch out.  So I came home, tired and hungry and irritated.

Irritated because the Pandora app in my spiffy new Camry refused to load the program.  And worse, as I fiddled with it, it froze in its loading mode and blocked all other audio inputs from working, so I had to drive home in silence

I had a little rest before the speech therapist arrived to check out Carol’s swallowing.  More of that below. 

After she left and before preparing supper—frozen dinners for both of us—I addressed the Pandora problem in a long telephone conversation with Toyota’s tech support only to learn finally, after all strategies failed, that Toyota was aware of, and trying to find a solution to, the problem in the app that is part of its Entune suite.  I took small comfort that the problem was now out of my reach.  The tech gave me a work-around with which I had to be content.

The visit from the speech therapist was in recognition that difficulty in swallowing is a predictable occurrence in the course of the progression of Carol’s disease.   On the advice of the nurse practitioner some time ago I began adding a thickener to her liquids to prevent them from eluding the flap that keeps them out of her lungs.  Anything that doesn’t belong there that gets into the lungs is likely to lead to pneumonia.

But aside from liquids I had noticed that occasionally solid food would get caught in her throat going down, producing a coughing fit and once or twice the forcible expulsion of whatever had been trapped going down.

My daughter Tracy, who in her practice as a malpractice attorney has become aware of danger signs, had encouraged me to see about having a swallowing test administered as she has seen performed in a hospital setting

It turns out that kind of test demands a hospital setting.  But the therapist did  have Carol drink both thickened juice and straight water and observed how her throat managed these.  She did not see anything alarming.  I also told her what kind of food she ate without problems for the most part, such as chewy protein bars.

All of which leads to turning this line of thought into a positive direction.  Belatedly, I had realized that part of Carol’s problem was excessive phlegm in the throat.  This should have been apparent sooner.

Because I have the same issue, no doubt caused by all the dust and mold in this century old farmhouse.  I find myself blowing my nose throughout the day.

To clear the mucous.

Carol cannot blow her nose.

My theory, confirmed by the therapist, is that the mucous drips down into her throat, or perhaps just gathers there, where it has no place to go and where it becomes a kind of food trap.  Supporting this idea, again from my own experience, is that I occasionally have coughing fits from bits of  food caught in my throat.

I recalled that my physician some time ago had recommended Claritin for my running nose.  I had forgotten that.  I found we still had some pills.  I began giving them to both of us, once a day.

I blow my nose with less frequency.

And more important, occasional difficulties with trapped food bits have almost disappeared.

That is the beginning of the positive light in our situation.

About done for the night.  Will resume with relating a more significant improvement.

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Did You Miss Me?

Tuesday late afternoon.  Expecting Ryan who has been working a lot of hours in the restaurant in town where it is the busy tourist season.  He came by yesterday about this time to mow half the lawn, and will be back today at about the same time even though Tuesdays are usually his off days.

He would not have been able to do any mowing yesterday if it hadn’t been for the coke remedy suggested by Jim Keely whom I first hired shortly after we moved in to construct floor to ceiling bookcases in our dining room, and whom I now call when I confront any kind of fix it problem.  He suggested cleaning the battery and starter terminals with coke.  I did.  It worked.  Apparently others are aware of this odd sounding remedy.

Wednesday late after an uneventful day.

A brief but provocative conversation this morning.

After serving Carol her breakfast, and feeding the dog hers, I started fixing mine.  I realized that in my grocery shopping yesterday, I had forgotten to get milk, this even though I have downloaded a very serviceable shopping list app.  I discovered, however, it does not work if you don’t enter an item on it.  So although I knew I needed milk, I didn’t see it on the list on my phone, so did not buy it.

All of which is preface to my deciding that because I really wanted milk for my cereal,  I would hop in my car and drive to the market, some four and a half miles down the road.  I can usually make it to the market and back in about fifteen to twenty minutes and feel reasonably comfortable in leaving Carol alone in the house with the dog for that length of time.

Carol was sitting in her chair in the living room with classical music from the Interlochen station playinh. “I’m going to the store,” I said, “and will be back in a few minutes.”

She didn’t respond, which is not unusual.  In those situations, I do not know whether she has processed what I have said.  Perhaps she was so into the music, or even somewhere else in her mind, that my words did not register.

No matter.  She was securely belted into the chair.  Nothing bad was going to happen in those fifteen or twenty minutes, so off I went.

Even though I had to cross a double yellow line to get by a one man cherry shaker doing about five miles per hour, I was back within those fifteen minutes.  I walked into the living room, leaned over Carol, kissed her forehead, and said, “I’m back.”

At first she did not respond.

“Did you miss me?” I said.

And here’s the point of my describing this incident.

“Yes,” she said.  “I did.”

Let’s take a closer look at that response.

The first word, the affirmation, does not indicate much.  She could have recognized that she was being asked a yes/no question, and so picked one of the two appropriate responses.

But her unprompted continuation offers a more provocative possibility.  It declares that she knew what I was asking, and wanted to be sure she told me that.

Now, I don’t want to push this analysis too far.  My question was not serious, having been gone for so short a time.  My voice might have indicated that I was teasing her.

But I will go this far in the context of my attempts to imagine her brain’s activity to suggest that she moves back and forth between a connect and disconnect with the here and now.

As do we all.  Only for those of us not afflicted with dementia we are much more in tune with the hear and now, even when our minds, or part of our minds, are somewhere else.

I guess my question for Carol is where her mind is when it is so fully disconnected from the here and now.  It is somewhere.

But where is that somewhere?

Sunday night after a quiet weekend interrupted by virtually no human contact.  I believe I say that almost every time I sit down to work after a weekend.  However, the repetition doesn’t make that observation any the less true.

And as usual, the only face to face interaction this weekend occurred on my Sunday morning trip to the store.  I arrived a little later than usual, partly by design, and was rewarded by finding out that the Times had just arrived.  I miss reading from the physical paper rather than following links on my computer screen.  I find I dig deeper when I have all those sections sitting in my lap.

While in the store I checked, as I do only very occasionally, to see the status of the copies of my books being offered for sale, hoping to attract the attention of the summer visitors as the locals have already had ample opportunity to purchase them.  I noticed that the books were hidden behind a cart laden with ears of corn.  There is a metaphor lurking in this situation, but I haven’t discovered it.  Anyway I alerted the regular clerk who moved the cart so that my titles were again visible.

I have been exploring what I imagine to be the interior of Carol’s brain.  I have concluded that it is an active place, a workshop of ideas, and/or memories that prompt responses such as a sudden, inexplicable burst of laughter as if she had told herself a joke or just remembered something amusing.  At other times, she seems to be forming words but they are not clearly enough articulated for me to hear them.

What I want to add to this exploration is recognition of  her marvelous imagination that provided her the material for her stories.  I think it likely that her imagination continues to generate ideas even in her present impaired state.  Why would it not?  Why would it shut down?

Quite often her facial expression certainly looks as though she is deep in thought.  True, I sometimes think she is focused on the music that is coming from the radio.  But that is not adequate explanation for that expression, which also does occur absent any music reaching her ears.

Something very intense and clear is going on behind that expression.  I will never know what that something is, can’t even begin to make a guess.

Other than to be reasonably sure that whatever it is, it is the product of that same powerful imagination out of which arose her stories.

And speaking of her stories leads to my very recent decision to see about getting them collected into a book, a project we had, in fact, been working on when she got sick.

Tired. Will pick this up when next write.

Tuesday night.  Usual shopping day Carol has been eating with more appetite these past few days, and that is a good thing.

Yesterday, I got on the treadmill for the first time in probably almost two years.  I have a felt need to get back into regular exercise and hope to be able to continue.  Part of the problem is the location of the treadmill in the furnace room in the basement.  I like to exercise with music and I’m concerned about being down there with my music on for forty-five minutes or so.  I know I am exaggerating the risk and might even be using it as an excuse not to exercise.  A more legitimate impediment to my doing exercise is lack of energy or the need  at times to just chill out.  I have checked into buying a folding stationary bike to be used in the living room within sight of Carol’s bed.

All of this speaks to the problem of finding my footing in these difficult circumstances.

I have begun making inquiries concerning the publication of Carol’s stories by sending the beginning of the MS containing the first two stories to readers associated with Mission Point Press, which published my recent books.  Not surprisingly both these readers wrote back with strong praise for the stories.

As they should.

I will also get in touch with another well-established local writer who has connections with a university press, which would probably provide wider distribution and perhaps more recognition.

Which these stories very much deserve.

Returning to the question of Carol’s mental activity now, I wonder if she is still exercising her imagination to write new stories.  Sometimes it seems that she is deep in thought about something.  If I need her attention on those occasions I have to call her name a couple of times until she starts, and then responds with a look on her face as though I have pulled her back from the place to which her mind had carried her.

Other times, she suddenly laughs as though having remembered a joke.

Or perhaps has just created one.

Of course, I will never know.

And I deeply regret that there will not be any more of her wonderfully imagined connections to the natural world in which she grew up, the waters of the bay, the farmland carved out of the rolling hills, the flowers and fauna, all of which was so vivid in her stories that the reader is transported into that world.

That world is peopled by the characters she places there, Native Americans, some wise, some comic, or the young farm girl in some of them, no doubt a stand in for herself looking to move out beyond the borders of that environment.

And always a search for, and insistence on, basic decency, her declared intention being to use her stories to instruct us on how we should live.

So sad that,at best, the new incarnations of that fictional world remain locked in a mind that can no longer birth them into the present for us to enjoy and appreciate.

In a strange kind of way that thought, the idea that not only I, but the larger world, suffers a significant loss as a result of her disease, provides a level of comfort to me.

Being robbed of her talent the world can join me in regretting her sliding into the unreachable depths of dementia.

Small comfort indeed.

But I’ll take it.

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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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