Music Hath Charms

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where I found the Simon and Garfunkel CD.

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

Carol had attended that concert.

That was in 1981 before she entered my life.

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

I asked if she would like to hear it.

“Yes,” she said.

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

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

And we will continue to listen.

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

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

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

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

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

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

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

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

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

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

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

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

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





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Being a Caregiver

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

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

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

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

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

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

She offered a genuine laugh.

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

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

Now the larger.

Mother’s Day.

How to deal with it.

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

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

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

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

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

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

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

Yet, I am content that I had tried.

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

So she did.

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

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

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

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

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

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

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

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

What does that mean?

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

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

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

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

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

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

A start.  Weariness is stopping the flow.

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

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

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

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

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

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

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

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

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

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

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

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

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

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




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Like Ocean Waves

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

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

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

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

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

An unpleasant but not life threatening situation.

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

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

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

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

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

But it wasn’t.

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

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

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

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

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

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

Until Carol changed that.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is no physical beating.

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

The moments pass.

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


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A Useful Fiction and Real Progress

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

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

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

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

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

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

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

She was having none of it.

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

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

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

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

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

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

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

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

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

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

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

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

And those kinds of fictions are necessary.

Carol, on some level, seems to agree.

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

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

The same holds for supper.

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

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

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

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

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

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

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

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

A start toward her standing.

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

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

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

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

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

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

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

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

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

A most successful several hours.

It did not halt the progress of the disease.

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

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


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The Chair

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

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

But he took the money.

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

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

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

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

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

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

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

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

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

And I just heard another train whistle.

Native American man now hunched over his phone.

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

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

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

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

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

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

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

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

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

I decided to take the plunge.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The old English professor hiding inside of me emerges and insists I correct my incorrect usage.  Carol was not agoraphobic, fearful of an unsafe environment, such as a crowd; she was acrophobic, fearful of heights.

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Hope Rides in on a Chair

Sunday afternoon.  Spring has finally arrived. Swaths of browned grass emerging from beneath the snow on the margins of the lawn.  Still significant piles of snow in other places, but the process has started.

Solitary bicyclists riding up and down Center Road.  Soon, they will gather into packs and spill over into the roadway, asserting their right to the same road as the cars.  On this twisty, hilly state highway, not always a sensible choice, particularly when there are ample shoulders to accommodate bicyclists even two abreast.

Carol sleeping, classical music from WSHU in my ear buds. 

The arrival of the sun and warming temperatures suggest an upswing after the very long winter.  Along with the seasonal shift, there is a tenuous reason, shadowed by a great deal of uncertainty, that our lives might improve.

Kyle Hamilton, the new physical therapist, messaged me a week or so ago with pictures of a tilt wheelchair.  In truth, I did not know what it was until I asked him.  I could see that it was a wheelchair, but there wasn’t enough detail beyond that.

It turns out that as the name suggests this wheelchair’s hydraulic system can adjust the chair from a reclining to a sitting up position and anywhere between. Kyle, who saw this particular item advertised on Craig’s List, explained that because Medicare no longer pays for them, manufacturers have stopped producing them, and therefore, they are, in his words, “as rare as hen’s teeth.”

I appreciate both the fact and its expression in that hoary phrase.

But what, I asked, is its relevance to my situation?

It will be a boon to Carol, he declares, get her out of the bed, reduce the threat of pressure sores from lying on her back, enable me to wheel her about the house, even take her to the outside.

All, well and good, I respond, but do you really think we will be able to get her into it, or to use your jargon, enable transfer?

Having worked with her a couple of times, and after extensive conversations with me, he believes this improvement might be in reach.

He came to this conclusion not only from his own observation, but also by factoring in my insistent emphasis on Carol’s paralyzing fear of falling.  If we can tamp down that fear, he thinks, she might regain the confidence to first sit up, then stand up, and if she does those things, she can then be helped out of the bed to a standing position and then to sit in the chair.

He provided what seems to my lay person’s mind a very logical analysis.  Having learned from me that Carol long ago was agoraphobic, and that only by an exercise of her formidable will did she overcome that fear sufficient to enable us to fly, he concluded that her dementia had robbed her of her executive cognitive functions, so that the fear, which he describes as primitive, reemerged with nothing to counteract it now.

Therefore, if we can diminish that fear there is  reasonable chance, as years ago she was able to work through it and get on a plane, that perhaps now she can reach the more modest goal of getting out of bed and into this marvelous chair.

I take due note of all the qualifiers.

Nothing is certain.

But certainly, worth a try.

What we need is something to tamp down the fear.

His answer is buspirone, an anxiety reducing medicine that he says he has had good success using with other patients.  He provided video evidence showing an elderly man pushing backwards as he is encouraged to stand.

Just as Carol now does.

But later, standing, and even walking.

The result of a regimen of buspirone.

Carol is now on it.  He noticed her being more cooperative during his last session as he worked her with stretching exercises.

We shall see.

I have noticed a troublesome increase in drowsiness and some loss of appetite.  I am told that these conditions might well be the body adjusting to the new medicine.  It is very hard to isolate causes, to divide those resulting from the meds, and those the product of the disease itself.

The situation will have to be, and will be, monitored.

I know, too well, how extraordinary it would be to achieve this reversal.

I did ask Kyle for the width of the chair so I could see if it would, in fact, fit through the doorways in this old farmhouse.

It will.

Fragile hope is growing along with the warming sun.

As if in counterpoint, from outside comes the roar of motorcycles, indifferent to all those still inside.

Tuesday night after an ordinary day of my shopping while the aide gave Carol a full bed bath.

 I continue to monitor Carol’s drowsiness and diminished appetite, trying to determine how much of these two conditions result from the progression of the disease on the one hand, and her body’s getting used to the new med on the other.  Today, she ate a full breakfast, but the aide said she was not interested in lunch.  She was sleeping when I came home, but when she got up expressed interest in supper and finished off the frozen lasagna I always serve her on shopping days.

I don’t cook on shopping days.

Yesterday, Kyle started his visit by measuring doorways to confirm what I had already told him in response to his concern, namely that the tilt wheelchair he wants me to buy will pass through these openings.

It will.

He worked very hard to take a step toward providing a solid reason for obtaining this wheelchair.  He assures me that the price is a bargain, that years ago when his family got such a device for his quadriplegic father, it cost, literally, thousands more.

We agree that although the price is a steal, the main question is whether it will be of use to Carol.

Kyle was reasonably sure when he first proposed my getting it.

After today’s session, he was more convinced, as was I.

Because with great skill, determination, and patience, he got Carol to sit up on the side of the bed, and then bodily lifted her into our travel chair.  She was not at all happy being made to sit up and resisted strongly his first several attempts.

He persisted, offering self-effacing chatter, attempting to bribe her with offers of money if she would co-operate, and finally succeeded  to obtain sufficient cooperation from her to get her into the travel chair where she sat, more or less comfortably for perhaps ten minutes.

Then she then did what she has always done when in that chair, and that is to slouch and start to slide off.

With my help, we righted her once, but when after a few minutes she started again to slide, we decided enough had been accomplished for one day, and Kyle hoisted her back onto the bed, where after a few moments she appeared to be again comfortable.

Lying flat on her back.

Still, progress had been made, sufficient to feed a small stirring of hope in tune, for the moment, with the promise of spring settling in outside our door where I see the daffodils, free of their snow blanket, raise their heads to the sun.

Wednesday night.  Carol and dog sleeping.  I am starting  this writing session a little earlier than usual because I am tired.  It’s been an eventful day. 

Or more precisely, it was a very quiet day until Kyle arrived at about six o’clock.

As he did last time, Kyle chatted, joked, and prodded Carol into some very positive results.  He managed to have her sit up on the side of the bed two or three time.  She offered strong resistance the first time, but after he let her rest for a while, the next times went more smoothly.  She sat quietly with him at her side.  He worked the bed’s controls so that both the head and the foot of the bed rose forming a kind of valley where she sat with cushions placed behind her to support her back, and her feet over the side and reaching the floor.

All of this took some time, and I didn’t think he was going to attempt much more.

But he did.

He wheeled the transport chair over next to the bed.  He sat in it and pulled the seat belt around himself, trying to guess at a setting that would fit Carol.  Then, having asked me to stand  behind the chair to steady it, he placed one arm under Carol’s legs at the back of her knees, and the other around her upper back and lifted her into the chair.

He secured her with the belt.  I remained behind the chair, stroking her cheek, assuring her she was quite ok.

And she was.

And she sat.

Kyle wasn’t done.

He wheeled her over to the dining room table where I removed a chair from the head of the table to make space for the transport chair.  For reasons we have not yet determined, she always looks either straight ahead or to the left.  Kyle had me sit where I would be in her line of vision on the left, and took the chair on the other side.

There were three fortune cookies on the table from Monday night’s Chinese take-out.  I offered Carol one, read her fortune, which had something to say about behind every able man was another able man, and I played with the gender designation a bit.  Carol happily ate the cookie.

I was quite pleased that she did because her appetite has diminished on buspirone, and keppra which she takes to prevent another seizure.

Then Kyle wheeled her back to the bed and lifted her into it.

Carol did not always accept these transfers without expressing her unhappiness in a voice that hit some loud, high notes.  Other times, she was quiet and accepting.

All in all, quite a productive hour.

I believe Kyle pushed faster than I thought he would, although remaining careful not to stress Carol, because he plans to close the deal on the tilt wheelchair.  Convinced now that it will work for Carol, he will pick it up from Cadillac on Sunday, and bring it here.

He will need to customize it to conform to the dimensions of Carol’s frame.

I did not know that was involved, but he says it is and he has done it before, just a little deconstruction and reconstruction.

He remains confident that, given the progress he has made, we will reach a point where I alone can get Carol into and out of the chair.  She will spend her days in it instead of the bed.  She will eat at the table, and perhaps even, with the help of some ramps, be wheeled outside.

Where she can see the daffodils closeup.

And perhaps with some kind of implement do a little gardening.



But why not aim high and see how close we can get?

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Party of the Second Part

In the last post, I proposed myself as the party of the first part in this life situation and certainly in the blog as well.  Carol, of course, in both ways is the party of the second part although I admit she would no doubt bridle at the second billing.

In any event, I will focus quite directly on her through the lens of her journals.

Sunday night, the end of a weather dominated weekend wherein a raging snow storm, perhaps unaware of, or indifferent to, the calendar showing us to be in the middle of April, arrived Friday and still hasn’t found the door.  Saturday morning I removed a foot of snow, some of it accumulated into drifts nearly twice that height.  This morning more snow fell and drifted, but removing it proved much harder because it was mixed with ice.  I decided to skip my usual Sunday morning visit to the local market even though I had cleared the driveway well enough to get the car out.  With all the ice and snow it just seemed a better idea to stay in the house.  I am a creature of habit, and so it was with great reluctance I came to this decision.  No doubt, in part, I was influenced by my concerns previously expressed about making sure as best I can that I keep myself safe.

My mind does flash to the end of Malamud’s The Assistant wherein Morris Bober, who I believe is younger than I, dies of pneumonia after shoveling an early spring snow.

As to my health, I was glad to receive the dermatologist’s judgment that the spots on my head, at this point, were not dangerous.  As a precaution she sprayed them with liquid oxygen to freeze them off and had me schedule a follow-up appointment in a couple of months.

One less thing to worry about.

Because dealing with the weather these past few days has sapped my energy, and eaten up my time, I am only now getting back into a writing rhythm.  In so doing, I have extended these introductory, here and now, remarks and now feel I should think about sleep.  If I were living alone, I probably would be indifferent to the clock, maybe even as I almost always did, read in bed for half an hour or so, but Carol will rise when she does, and her needs will call to me, sometimes with serious insistence.

So, I will, as I sometimes do, just begin what I intend to explore in my next session with my laptop.

In considering the material that I was about to post in my blog this weekend concerning Carol’s journals, and in reviewing the journals themselves, a couple of ideas emerge.

Those journals primarily cover 2005-2006.  One of them then continues briefly seven years later in 2013, a couple of years before Carol’s bout with breast cancer.

In them, I noticed the almost frenetic energy with which Carol was trying to shape her fiction, first her stories, and then a possible novel, or non-fiction book, and finally at the end of the period covered by the journals, a reasonable compromise moving from short stories to book length publication by marketing her stories as a collection.

I think I now understand two factors, which unnoticed at the time explain this intense energy.

The first belies an assertion that I made in the already published blog post, and that is namely that the years in question, those covered by her journal entries, were unremarkable.

Not so.

They were remarkable in one most significant way: our daughter left for college and we became, although I never thought in these terms, empty nesters.

I don’t know if Carol saw herself as the mother bird watching her fledgling take flight, but it seems abundantly plausible that she consciously or not was profoundly influenced by our daughter’s leaving.

In danger of getting too caught up with this line of thought, which would result in inadequate sleep for me, and thus lead to a difficult day, when the weather, according to a recent forecast, promises to continue unpleasant.

Monday night. Just short of a  month into spring and yet another day of snow dumping four or five inches.  Snow blower acting like it just has had enough.  Tosses the snow but barely moves.  I had to supply the muscle to get it up and down the driveway.  Not a very good idea, but I do get stubborn.  As I was straining I worried about Carol in her bed, but continued anyway.

 Dealing with the weather yet again has left me too tired to write tonight.  Hope to pick it up tomorrow although it is my shopping day.

Tuesday night.  Another six to eight inches of snow.  Neighbor Rocco on his riding snow blower cleared the driveway  in time to provide access for the nurse practitioner, then the aide, who came with a trainee, and finally, for me to get out and to the stores.

Carol never indicated how hard it was for her to deal with our daughter’s leaving.  Perhaps she herself was not aware.  Outwardly, she was delighted.  She had invested so much time and emotional energy in enabling Danielle to overcome her Asperger’s sufficiently to let her native intelligence carry her through school and into college.

And there probably was a certain amount of relief for Carol as well.  Satisfaction, too, of a job well done.

Later, when Danielle had graduated and gotten her first job in Cleveland, we refitted her bedroom as an office for Carol.  In it, she could devote herself much more fully to her writing career.

That explains part of the stimulus for that frenetic energy evident in the journals.  But there there is that second factor, which this late I have come to believe was just as important.

In 2005, the year Carol starts her journal writing, my novel Murder On Old Mission came out.  I now believe its arrival amplified Carol’s writing ambition.

Of course, one reason I am late to this realization is that I had already published five novels during the time we lived together.  The publication, therefore, of another novel from that perspective does not appear particularly significant.

But I now think it was.

For several reasons.

First, Carol’s own career seems to have stalled after significant early success with her short stories. One of them, “Dancing Feather Light,” appearing in the South Dakota Review, attracted the attention of a well-known New York agent, who contacted her to see if she could send him a novel.  Stories are all well and good, but they rarely generate anything like serious money.  Novels can.  Others of her stories were recognized with prizes.

However, those successes in 2005 were beginning, I suppose, to look like they were in the rear-view mirror.  Without checking dates, I am fairly confident in saying they all predated our move to Michigan.  And the prospect of a novel dangled by the agent’s query no doubt motivated her to try the longer form.

Then my novel came out, based on a suggestion from Carol’s father, and set on this very peninsula on which she had grown up and on which we now lived.  The book did well locally, receiving critical praise.  Carol, no doubt, was happy for me.  I do remember her saying early on in our relationship how delighted she was to have fallen in love with another writer.

Still, putting all this together, I now see that she so much wanted to get her own career back in gear but was finding it so difficult.  There was her ADD, which her journals make clear she always battled.   In fact, there is a brief note written in a large hand in her journal that “He,” meaning yours truly,” will never understand my ADD.”

There was the vacuum created by our daughter’s moving out on her own, and then there was my very local, but still intense, success rooted in her turf. I can even imagine that had that 2005 book been set in my hometown of Brooklyn, it would not have moved Carol as much to get her own book out.

Now, with the cliched wisdom of hindsight, I can see how hard Carol worked in those years to get her own book out.  My guess, knowing the strength of her ambition and her stubbornness,  she would eventually have succeeded.  She had overcome so much, her natural shyness by getting her JD, her small town rural consciousness by immersing herself in New York, her agoraphobia by willing herself to travel by plane, all of those obstacles unable to block her on her way to wherever she chose to go, convince me she would have gotten her first book out, and then there would have been others.

Had not first cancer, and dementia intervened.  The cancer alone would only have slowed her down. But the dementia, striking at her cognitive abilities, was too big a barrier.

One last, sad note on this topic, at the end of the journal that continued into 2013, I observe that her wonderful handwriting was beginning to deteriorate, just a little.

Another very early, unnoticed, sign, not visible to me until a few days ago, of the beginning of where we now are.

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Party of the First Part

According to the calendar, we are two weeks into spring.  However, winter does not seem to be paying attention.  The cold continues, as does the occasional snow.  Several more inches are forecast for tomorrow.

It is approaching midnight, and since I have to be up fairly early tomorrow to accept the delivery of the repaired window blind, I don’t want to stay up too much longer.  Still, an idea wants to out itself onto the page.

My neighbor Wendy, who kept her husband home as he withered under the relentless attack of dementia, came to stay with Carol so I could go into town for my fasting blood test ahead of my annual checkup tomorrow.

On the way into town I was reminded of the last time Carol accompanied me into the lab for one of these occasions, which occur every four months.  My memory blurs a little as I try to pin down which exact ride into town I am recalling, but I am guessing it was about a year and a half ago, before her disease had manifested itself so forcefully.

We had secured the handicapped placard for the car, and Carol was still fairly mobile.  Otherwise, she would not have been accompanying me to the lab.

However, this time we never did get there.  As we drove, Carol became increasingly uncomfortable in the car.  I did not know then, nor can I say for certain now, what exactly was distressing her.  But distressed she was.  Perhaps it was the motion as the car followed the up and down and winding road, the same road she had been traveling much of her life except for those years when she was not living on this peninsula.

As we neared town, her discomfort was so intense that I decided I could not contemplate taking her into the lab with me.  I turned around and drove us back home.  Once in the garage, I could not manage to get her out of the car.  She was in a state of panic, or maybe, it was anger, but whatever it was, she was not going to co-operate.  Finally, as I had done on other occasions when her behavior had gone beyond what I could handle, I called her brother Ward who always seemed able to soothe and calm her.

Not this time.  He could do no more than I and urged me to call 911.

I did.  An ambulance came and she was taken, not happily, into the vehicle and I followed it into the hospital.  There, predictably, we spent hours while tests were run and the emergency room doctor consulted with both Carol’s primary care physician and the neurologist she was also seeing.  The result of the conferencing was the hypothesis that her behavior resulted from a new medication, I believe it was Namenda, that we had recently started.  Since none of the tests indicated any other likely cause, this was a reasonable guess.

All during this time, she was very upset, and disoriented.  She insisted she wanted her husband and rejected the idea that I was in fact there.  Eventually, she calmed down enough to be released, and I was able to take her home, pretty much without incident although she still was not comfortable sitting in the car.

I took her off that medication, and her behavior returned to its usual patterns.

Looking back with the clarity of hindsight, attributing this entire incident to the medication is perhaps overstated.

As in so many other ways, now clear to me but hiding their true identity at the time, this event was just dementia flexing its muscles.

Perhaps as a warning.

Or maybe a boast.

Saturday afternoon, an unusual writing time for me.  But a couple of ideas are swirling around in my head and I want to snatch them, lay them out on the table, and see where they want to go. I am familiar with this kind of experience, of ideas seeming to rise up from some hidden factory deep in my brain whenever I am heavily involved in a writing project.

It will be lunch time soon, so I will just get started dealing with this idea effusion, planning to pick it up later, perhaps even this afternoon, for what else am I going to do on another day when winter refuses to leave, offering temperatures going down into the teens, accompanied by occasional snow showers.

I don’t know whether I am the party of the first part, or party of the second part in this blog.  Apparently, my readers share my confusion.  Some see this blog as Carol centric, others as Steve centric while still others seek the middle between those extremes.

Comments on my recent post include one instructing me to “reinvent” myself and just move on, while others express empathy for my situation.  Still another wishes Carol were able to read my words, and yet another sees her own experience in some of the details about Carol that I present.

My conclusion is, first, that the comments, as is always the case, tell a great deal about the commenters, and second, that there is truth in all of them.  This blog is about both of us.  Sometimes the focus will swing one way, sometimes the other, but always it is about the bond between the two, that bond in the past, the present, and the future.

Tuesday night, squeezing in a little writing instead of watching a television documentary about how Hannibal crossed the Alps on elephants.  I’ve heard that story, of course, but somehow it never registered in my mind as real.  It was too spectacular, too long ago, seeming to exist in its own time and space, not the one I inhabit. 

I’ve got that show set to be recorded along with the one following it on public television, that one about the famous Leopold and Loeb thrill killers in the 1920s.  I have read about that case, and I recall Clarence Darrow tried to save the two young men from execution.  I can’t remember if he succeeded.

Though the shows will be available at my convenience, I find I record many more shows than I actually wind up watching.  That is why I’ll keep this writing session a little short, so I will be able to watch the thrill killer one when it actually is on.

I’ve been thinking about my relationship to Carol, using the terms party of the first part or party of the second part.  Something is coming into focus, although I do not yet have a name for it.  Instead, I can think of specifics that lead to some kind of understanding, and then perhaps a word to describe it.

The specific detail that jumps to mind is, admittedly, almost silly sounding when I look at it as others might.  Nonetheless, it is a strong presence in my mind.  It goes this way.  Every day I cross the road twice, once in the morning to retrieve the newspaper, and then in the afternoon, to pick up our mail.

Each time I do so, I make sure I have my phone with me.  Now, here comes the seemingly absurd part.  I want to make sure that if I suddenly fall down from a heart attack, I will be able to dial 911.  The possibility of a heart attack is not the absurd part.  About twenty years ago, while we were still in New York, I had two coronary stents inserted to relieve blockages.  I was asymptomatic at that time, but the stress test revealed the problem, and there certainly is abundant history of heart problems in my family, including my mother, two paternal uncles, one maternal aunt, and my father, although his problem arose when he was eighty-six while the others’ lives were shortened by coronary disease.

Still, all that being true, why do I obsess about having my phone?  Well, for one thing, houses north and south of us are some distance away, and there are none east and west where there is orchard on one side and undeveloped land on the other.  Therefore, conceptually, I could lie on the ground unseen for some time.  On the other hand,  if I had landed on the road a car driver might  see me or  or more likely ride over me, in which case, the phone would do me no good.

Writing this out demonstrates how ridiculous these ideas are.  But what is not ridiculous is the stimulus for these thoughts.

My bed and dementia ridden wife would not know what had happened to me nor would she be able to respond to it if somehow she were made aware of my lying outside somewhere.

It is necessary to point out that my concern is not primarily my own safety.

Rather it is I have to keep myself alive.

For Carol.

Wednesday evening after a quiet day at home.  Spent an inordinate amount of time revisiting family history on my mother’s side, prompted by shortcuts on my desktop to census documents, which in turn reminded me that grandson Peter wanted to know my mother’s maiden name for his own family research project.  I sent links to the documents to him, care of his mother Kerri, but then jotted down what I remembered about that side of the family, and when I could not recall a detail, I dug out a folder that contained the information.

All of which was a useful distraction on a day when not much else was going on.

Tomorrow I have an appointment with the dermatologist to check out precancerous cells on my scalp.

Which leads into what I was writing about last session.

Namely, how my thoughts concerning my own mortality are now inextricably bound up in my self-defined role as Carol’s caregiver.

Ordinarily, I don’t dwell on my demise.  And I wouldn’t be doing so now except for the responsibility I feel for Carol.  I confess I am concerned about how she would fare without me.  Somebody would have to take over.

But who?

Our daughter now lives in Minnesota, and has not yet established herself solidly on her career path as a programmer.  She is getting closer to that goal, but it is not at all certain where she will wind up living.  Probably not here because the job she seeks is likely not going to fortuitously turn up where the main industries are farming, tourism, and medical care of an aging population.

Of course, there are Carol’s siblings, but frankly I don’t see any of them stepping forward.  At the moment, they are still involved with their mother, now living in a care facility herself, and otherwise they seem to be settled into their own concerns.

Which do not seem to include their sister in any meaningful way.

So, I think my concerns are just realistic.

Which leads to the exaggerated, somewhat comical concern of making sure I have my phone with me so I can call 911 should I find myself disabled on the road on the way back from the mailbox.

Somehow in my imagination, the disabling incident always occurs on my way back.

Perhaps it is my fiction writer’s flair for the melodramatic.

Struck down steps away from his ailing wife.  Mail strewn across the road.

A letter from his publisher in one hand, the other reaching for his phone.

Which he left in the house.


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The Insistence of Hope

My old friend the deity I named George decided to pay me a visit today, either to distract me from the serious business of Carol’s seizure or to just pile on, I’m not sure which.  Either, no doubt, would amuse him.

When I saw the message from eBay in my inbox, I recognized George’s hand, for that message informed me that my recent order had to be canceled because of a problem with the shipping address.

Yes there was a problem, but not with the address.

I hadn’t ordered the item.  When I went to my eBay account, I saw the recent history of items I had checked out.  But, of course, I didn’t recognize them, for I had not trafficked on eBay in quite some time.

Most of my morning was thus spent, all the while keeping one eye on Carol, doing the protect the security of my account dance, the steps for which I am now familiar with from previous experiences with Amazon and my email account.

I finished all that just in time to give Carol lunch before the aide came, releasing me to go to town for my weekly shopping.  So here I am at the end of a very long day, trying to pick up where I left off concerning the seizure.

The nurse practitioner came out within an hour or less from the onset of the seizure.  She checked Carol’s vitals, and looked to see responses to visual and audio stimuli.  She snapped her fingers near Carol’s eyes or asked her to move her head toward the right.  Carol’s responsiveness was limited.  She then, with my help, took a blood sample, which she would drop off at the hospital in town to see if a cause for the seizure would be revealed.  Her best guess is that the seizure was just a product of the progress of the disease, and probably not caused by stress as had been suggested when she had the first seizure in December.

Today, the lab test results reported nothing that would have caused the seizure, and Carol seems mostly recovered.  Last night, she had trouble eating because of her injured tongue, and would tolerate only cottage cheese.  But today, she had her usual breakfast, and half a sandwich for lunch.  The aide reported that Carol resisted a full bath, permitted some washing, and went back to sleep.  She roused for a full supper, including a large cookie for dessert, and then went back to sleep.

I’m assuming that tomorrow, she will be fully back to what I now know as her normal state.

Lost in all of this is the fact that yesterday I had to cancel the first visit of the highly recommended physical therapist. He had scheduled two visits this week, and said that unless I otherwise advised him, he would keep tomorrow’s appointment.

I hope Carol is up to it.

I hope he is as good as advertised.

I know both hopes are fingers in the dyke of Carol’s disease.

We are now three days past the seizure and things seem to have settled back down into our regular patterns.  I had lunch today with two of my usual group, one of the others now in Hawaii visiting his son, and the other off on some domestic errand.  I left Carol in the care of a new aide substituting for the one on vacation this week.  She worked out just fine.  Because Carol slept most of the time after eating lunch this aide looked for things to do, to the extent of cleaning windows inside and out.

Carol would surely have appreciated that.

Yesterday, the new therapist arrived.  He is as advertised.  We agreed on setting both unrealistic and more realistic goals.  The former would be success in getting Carol back on her feet, confident enough perhaps, to again use a walker.  The latter started at enabling her to sit up.  That simple fact would facilitate my dealing with her change of clothes.  More ambitious progress would extend that sitting up to a stand and sit transfer into the transport chair so that I would be able to wheel her to the table, and maybe even outside, although that latter would involve figuring out how to navigate steps.

Besides setting these goals, we also discussed strategy of treatment. I was delighted to discover that he believed in going very slowly.  The implementation of that strategy during this first visit centered on his establishing a level of rapport through a lot of conversation.  He did a little bit of range of motion exercises, but mostly talked.  Every once in a while, I would add a comment to his patter, just to keep it moving along.

All in all a very good start.

I will end this writing session on that happy note, for if I continue I will no doubt feel compelled to state the usual cautions.

They can wait.

Good Friday night and also first night of Passover.  Carol is asleep, and I am snatching a little writing time away from watching the Dodger game streaming on MLB network.  This will be a short session, perhaps developed at greater length over the weekend.

If we were still in New York, or if Carol were still well here in Michigan, I would nod my head toward my holiday by having matzohs and macaroons in the house and perhaps cook up a brisket for us and a couple of friends.  That would be my substitute for a full dress seder, which I haven’t really experienced very often in my adult life.  In New York, I don’t recall us doing much more for Easter than getting some chocolate bunnies.  Here in Michigan, we would usually be invited to a family celebration of the holiday, which when the kids were young on at least one occasion included an Easter egg hunt.  More recently, as Carol’s siblings would sometimes attend holiday activities at spouses’ houses, we might go out with sister Jane and family to a buffet in town.

In short, neither of us were seriously invested in holiday celebrations, and left to our own devices would pay minimum attention to them.

So, I do not mind that we will pretty much ignore both holidays this weekend.

The game calls and will not be denied.

It is Sunday night approaching midnight.  As expected the holiday weekend passed quietly.

And that suits me just fine.

 I did a little book business, and attended to a broken string on one of the blinds in the living room.  I arranged for it to be picked up today by the woman from whom we bought these blinds years ago and who repairs them when necessary.  She has family on the Peninsula and offered to pick up the blind today after visiting her relatives.

Winter decided to inform us that it was not done yet, offering some snow and wind on Saturday, followed by dropping temperatures today.

As I was thinking about what I could prepare for supper, the doorbell rang, and there stood Brad from next door, accompanied by Marty, two of my lunch companions.  Brad had plastic containers in his hands, which he offered to me, saying that he was aware that it was Passover but Amy had prepared an Easter dinner for us.

Lovely people, dealing with their own problems but thinking of us.  Brought a smile to my face and lifted my spirits.

Tuesday afternoon in the library.  Lots of noisy chatter from some kids.  Although it is again snowing so far the predictions of a serious accumulation have not occurred.  Roads are still clear.  Snow is anticipated through the night.

We shall see.

An April snow is not particularly unusual hereabouts as the Facebook You Have a Memory on this Date reminds me by reposting images from years back showing the property around our house beneath a white blanket.

But this year, perhaps because of my circumstances, and because as well, Easter occurred two days ago on April 1st, and not because income tax returns are due in twelve days, this snow, this year, puts me in mind of the provocative opening of T. S. Eliot’s “The Wasteland,” to wit, “April is the cruellest month….”

The poem is famously difficult, and this is not the place to even begin to suggest what that line leads into.  Rather, I choose to look at it, more or less, out of its context to see what thoughts it leads me to consider.

First  this five word declarative sentence just seems wrong.  In the northern hemisphere where Eliot spent his entire life, April is the doorway to spring, to life returning from the dead cold of winter.  It is no accident that Easter occurs in the beginning of spring.  Its message of overcoming death would not play well in winter, but it fits the warming season.  If vegetation can return from a dead like state, then so can people who have died.

Of course, Eliot is well aware of these associations of religious belief with the annual cycle of seasons.  What he is offering is a paradox, a seemingly contradictory, even absurd, statement, which nonetheless is true.

April can only be seen as cruel if its promise is not realized.  Because we respond so strongly to the promise of revival, to the prospect of life returning with its usual vigor, we are that much more distressed when that doesn’t happen.

The rest of the poem, built on this paradox, explores it with a wealth of erudite details drawing on anthropology and comparative literature, all of which make it the bane of any undergraduate student who is asked to deal with it.

I, though, will simply take that paradox and apply it to our experience with dementia.

First, complete Eliot’s basic point.  As the title of this poem suggests, he does not see the promised revival as arriving.  Therefore, the hopeful expectation is not, and perhaps will not, be realized.

From there, it’s an easy transference of terms.  Just take every instance that seems to promise a positive outcome and equate it to the disappointment April presages.

Library now quiet, kids gone, but I have to get home.

Late at night.  Wind howling.  Forecast still predicting significant snow through the night and into the morning.

OK, let’s make the connection.

During the course of this disease, this dementia, at least as I have been experiencing it, there have been numerous little aprils, the lower case beginning letter being deliberate to indicate the difference with the month, and the quantity, many more than a mere one a year.

But the similarity with the poet’s month remains.  These little aprils raise expectations that are routinely disappointed.  One would think that this repetition would by its very nature diminish the expectation that the promise will be realized.

But it doesn’t any more than the annual arrival of April does not produce the hoped for conquering of death that Eliot has in mind.  True, the weather does warm, nature springs back to life, only to be followed by the inevitable death of winter.  Again, of course, Eliot is probing for deeper meanings beyond seasonal cycles, but it is enough in this context to say that just as the hope of the season of April inevitably gives way to the winter, the hopes raised by the lower case aprils during the course of the disease will yield to the reality of the dementia’s crushing power.

What brings all of this into the present moment is the arrival of the most recent physical therapist who again raises the possibility that as good as he seems to be he will be able to make some progress toward modest goals, such as enabling Carol again to sit up, and perhaps even, with enough assistance, again sit comfortably in the transport chair.

It is not much, and it may not happen.

The lower case april might well emulate its larger sibling.

But if nothing else it is better to live with realistic hopefulness than wallow in despair.

I’m sure Carol, if she were able, would agree.

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