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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Family Roots

Saturday afternoon, St. Patrick’s Day, an unusual time for me to sit down to write, but some ideas began to percolate as I took a late morning shower and I want to at least get started seeing what they have to offer.

I am in in my office, having just taken care of printing a check rather than using bill pay.  The dog, as has become her wont, only came halfway upstairs.  I have been trying to figure out why she does not follow me all the way up.  This is not a major issue, but rather an engaging puzzle.  Assuming a high level of doggie intelligence, perhaps she understands that the upstairs is now foreign territory since we live so much on the main floor.  On a lower level of cognitive functioning, maybe the dog treats my being upstairs the same as if I had left the house altogether.  Or maybe she is just confused.  Or enjoys the sun coming through the window onto the landing.

I think I’ll go with the last possibility.

Carol is sleeping but might waken soon, so I will just start heading in the direction that is forming in my head, with the intention of picking it up later tonight or tomorrow.

Today, I have on my well-worn Guy Noir sweatshirt.  That fact is what demanded attention, and I will return to it, for it will bring me back to Carol.

But before that, mentioning St. Patrick’s Day reminds me how my father when he was on the job or  in a social situation where he wanted to establish his presence would refer to himself as “the big Irishman.”

That self-characterization was factually questionable on two levels.

First, although unquestionably muscular, even powerfully built, at 5’9” at an estimated 190 lbs., he was not an especially “big” man.  I am three inches taller and carry perhaps ten more pounds.

But I don’t think of myself as “big.”

My father chose to describe himself that way because he was not being literal minded, as I sometimes am.  Rather, he was accurately indicating the enormous strength in that ordinary sized body.  I have no argument looking at his statement from that perspective.

The second point is more interesting.  Why call himself Irish?

To be sure he was born in County Armagh. But his parents were recent immigrants from Lithuania, and by the time he was about five they had moved the family to Manchester, England, where I still have an extended family of first cousins and succeeding generations.

So his Irishness was really just a matter of accidental place of birth. Nothing more.

And yet he liked to refer to himself that way.  I never spoke with him about this preference, but in my own mind I thought I had it figured out.  He must have calculated, consciously or not, that it was more acceptable in America, his adopted country, to which he had emigrated when he was twenty, to be Irish.

More acceptable than what?

Than Jewish.

He did tell stories of the antisemitism, he had encountered growing up in Manchester.  Or maybe he just thought the Irish assimilated here more easily.

That speculation, no doubt, revealed his lack of awareness of how Irish immigrants had been so scorned when they arrived here that the Know Nothing party rose to national prominence in the middle of the nineteenth century riding the vehemence of its anti-Irish, anti-Catholic agenda.

Carol is stirring.  I will continue this.

Later the same afternoon.  Shutterfly just gave me an unwanted shock by sending an email, which opened up with a smiling Carol beaming back at me. 

A promotion.  Trying to sell its services.  The picture was from eight years ago on our trip to California.  The unexpected image struck me hard.

To resume, and complete this long introduction to where I want to go today, while my father was an immigrant, my mother was born in New York, the daughter of Ukrainian parents. The Brooklyn in which I was raised was populated by immigrants of various ethnic and cultural persuasions trying to become American.  Those of my generation had pretty much crossed over into that identity.

Carol’s family background could not be more different.  Her distant antecedents stretch back to the eighteenth century while the more recent ones have been farming on this peninsula since the middle of the nineteenth century.

If America with the exception of Native Americans is comprised of immigrants, some of them have been here a very long time.

Before I met Carol, I had never heard of Garrison Keeil0r, or the Prairie Home Companion, his radio variety show that presented his thoroughly Midwestern, what shall I call it, yes, a New York, Yiddish based word, his thoroughly, unapologetic Midwestern shtick.

I became a fan, and thus the Guy Noir sweatshirt featuring one of his characters I am wearing today, serving as an emblem of how to some extent I merged my New York formed identity with Carol’s.  In other ways I adopted some Midwestern traits, much to the surprise of at least one of my brothers-in-law.  I have learned to use a chainsaw and split wood for our stove.  I have somewhat expanded my knowledge of birds from the familiar pigeons of New York to the occasional eagle flying in our skies or the humming bird at our feeder.

And Carol had learned to love New York when she lived there, the diversity, the energy, the cosmopolitan perspective.  She taught herself to navigate the subway system and to deal with the much greater intensity of interpersonal interactions in the city although I suspect she was never completely comfortable with them, as I never fully adjusted to  Midwestern reserve and conflict avoidance.

Our thirty-six years together now almost equally divide between our respective geographical and cultural roots.

We are both different for having experienced our differences.

But one of us is losing awareness of who we’ve become and seems to be retreating back into who she had been.

As I loaded the dishwasher after supper this Tuesday evening, I saw on the window sill the spent yahrzeit that I had lit a day late.  I have the date marking the anniversary of my mother’s death on my calendar, but over the weekend I had lost track.  More importantly, however, and perhaps part of the reason the day slipped by unnoticed, is that Carol used to join me in this little candle lighting ceremony, yet another of her efforts to help me remember from whence I came.

Spring is trying to advance against the stubborn remnants of winter evident in the patches of snow still on the deck and grassy areas front and back of the house.  The roads, for now, are clear, and I sailed into town for my weekly shopping.

With the approach of warmer weather, we will soon hear the heavy thumping of diesel driven tractors as the farmers begin to prepare their orchards for the upcoming season.  Accustomed as I had been to city noises, these sounds don’t really bother me.

And I expect Carol rather enjoys them, that in her current estate they can remind her of her farm family roots.  This is so even though as a young woman she had made up her mind that, as she has said countless times, she wanted to get out into the larger world.

She did, traveling west to Minnesota and east to New York, from this small rural community to the unspeakably larger environment of the metropolitan area.  As my retirement approached, it seems as though she had seen enough and she felt again the pull of the land and its agricultural rhythms, and made it clear that she wanted to return home.

And so we did.

And I learned the new rhythm.  Up until then, I had long been accustomed to the structure of the academic calendar, fall semester, spring semester, summer, and back to the fall. What I experienced here was similar in having a defined pattern, a beginning, middle, and end contained within the boundaries defined by nature, and the different harvesting time of the local crops, primarily cherries first in the spring and ending with apples in the fall.

I am curious to see to what extent Carol this year will tune into the farming activity.  I’m guessing that the noises of the farm vehicles will stir memories from the time when she drove them, especially the cherry shaker.  Will she recall, as she so often did, that she was the first woman cherry shaker driver on this Peninsula?

I hope she does.

If her hold on the present is shaky, and her ability to think about the future pretty well gone, her long term memory can still provide ballast to steady her as she rides on the troubling waters of confusion.

Coming on midnight after a spectacularly uneventful day, uneventful that is with the exception of one phone call.  Another physical therapist called, this one strongly recommended by the practice supervising Carol’s care.  Apparently, he has had good success with dementia patients.  He will call again to set up an appointment. 

He represents, perhaps, our last best shot.

As our equally divided bookcases represent our different reading tastes, so, too, did our approaches to our arable land.  Carol’s strong visual sense motivated her to plant flowers.  She had definite ideas as to what colors she wanted and where she wanted them to be.  Her last impulse in this direction was a desire for yellow daffodils.  The spot that I suggested, to which she agreed, is a stretch of lawn between our two flowering crab apples.  Creating a planting bed was more than I wanted to undertake in my present circumstances, so I hired a local husband and wife landscaping business to do the job.

Carol had one good season to enjoy that mass of yellow (with a few white sprinkled in for variety).  This year, unless the new therapist has unexpected success that enables her to get to a window, she will not see them.

Although I appreciate the color of flowers, and when I was a kid in Brooklyn I found little patches of soil in our landlord’s yard where I was permitted to grow zinnias, as an adult I prefer to plant things I can eat.  So I have a vegetable garden in which I attempt, with mixed success, to grow beans, potatoes, tomatoes, and different other veggies in different years, such as corn, cucumbers, zucchini, and so forth.

Although I planted the vegetable garden, Carol enjoyed weeding it.  In fact, she liked nothing better than to sit in the dirt attending to plants, be they flowers or vegetables.

I look over to the hospital bed where my farm girl wife sleeps, largely unaware at least for now of the impending planting season.

If she can no longer go to the outside, perhaps I can figure a way to bring it inside to her.

Late Monday night after a difficult day that has left me with little energy.  Will get this section started and look to continue in the next day or two.

Having left Carol dozing late morning, I went upstairs to my office computer to work on Quicken in anticipation of a meeting with our tax preparer the end of the week.  I came down after about half an hour with a basket of laundry.  Glanced at Carol as I passed by.

She looked a little restless, and I thought about seeing if she wanted lunch.  Took the laundry downstairs, dumped it in the machine, and started the wash.

I remembered that I had intended to call the dentist to schedule my regular  cleaning.  Her office had send an automated phone reminder yesterday on a Sunday.  Unusual, but effective. I felt I should take care of that.  We have a land line phone downstairs, but I decided to call from upstairs.

I came back upstairs into the living room.

Carol was not lying as she had been.

Her whole body was shaking.  I approached her on the bed to ask what was the matter.

That was when I saw the blood coming out of her mouth, mixed with spittle, accompanied by a gurgling sound.

Stupidly I asked her again what was the matter.  Of course, she did not respond.  More blood came out of her mouth.  I found a washcloth, wet it, and wiped her mouth as the blood continued to spill out.

I talked to her.  She did not respond.  I took her hand, and she held on to it.

The shaking stopped.  So did the blood.

But still she did not speak.

I sat with her, holding her hand.  Her eyes kept moving from left to right, but I am not sure she was actually seeing anything.

When I was sure the shaking and the blood were not going to start up again, I called the practice and described the incident to the nurse, who said it sounded as though Carol had had another seizure. The blood, she said, likely came from Carol’s biting her tongue.  She wanted to know if I wanted to have her taken to the hospital.  I was not sure what the right thing to do was.  I said I wanted somebody to check her out.  What I meant was I did not know how to accomplish that, but that was what I wanted.  The nurse said she would move people around and send somebody out.

Enough for tonight.  I need sleep.


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Two Worlds and Not the Plot of a Bad Novel

Saturday night and while Carol sleeps I have been watching preseason baseball, my Dodgers playing the Cubs.  Ordinarily, I would not write tonight, instead taking my usual one day break to recharge the batteries.  But tonight, changing metaphors, I sense that the well from which I draw my ideas is brimming with thoughts, feelings, and observations that need to be sorted out and expressed.  I will try to get started,  drop the bucket down, then pull it up, and see what’s in it. 

No doubt I will have to drop it in deeper but this will do for now, just a few sentences for tonight.

Today has been emotionally exhausting.  For several hours, I was literally in two different worlds.

This morning at precisely 10:30, I clicked on a link that opened up a service that was about to stream my grandson’s bar mitzvah on Long Island, NY.  I had intended to be there, but for the combination of reasons I have already discussed,  I canceled my plans to drive across country.

Instead of sitting in the temple among family, I was in my usual chair in the living room.  I had made sure that we got moving early enough to take care of all morning chores, and Carol had fallen back asleep.  I had toyed with the idea of setting up the laptop so she, too, could watch, but that was a silly foray back into the then whereas in the now Carol would in all likelihood not remember this young man whom we had not seen very often, and even if  in the unlikelihood that she did, she no longer can process visual content on a screen.

Having abandoned the idea of sharing the event with her, my hope then was that she would sleep through it.  That might sound unkind, but it was a practical concern.

She did.

And so I sat in my chair staring at my laptop screen while occasionally glancing at Carol and past her through our sliding glass door to a view of the back of our five acre property that offers a sliver of East Bay beyond the trees.  On this gray day, the sliver was dark blue tending toward black, and the trees were still bare of their leaves.

That scene contrasted sharply with the bright colors and textures of the interior of the temple, and as the streaming began I could hear the low murmur of the congregation out of the view of the camera, and watch as the final setup preparations were completed on the bima, the raised platform at the front of the sanctuary.

Thus my two worlds.

That’s a good enough start.

Sunday night after the first day of spring forward.  Sun up an hour later and sets an hour later.  Hereabouts dusk now approaches eight o’clock. By the peak of the summer, it will be another hour later.

Went to the store as usual this morning but the Times hadn’t been delivered yet.  Read it online, but missed the feel of paper.  Rest of the day was, as usual, quiet and I had a chance to catch up on email including one related to my writing business.  We’ll see if that one bears fruit.

The starkly different visuals of the bar mitzvah on my laptop screen versus the rural Michigan landscape outside my glass door only begin to explain the separation I experienced yesterday.  There was, of course, and probably more intensely, the matter of the people on that screen dressed out in their fine clothes on the one hand and my bed ridden wife on the other, while not forgetting the ever present dog on the floor.

To be honest, I was not all that interested in the service itself.  There’s a reason why after my own bar mitzvah, I only attended services for necessary ritualistic occasions, primarily bar and bat mitzvahs. My attention to Judaism leans more heavily toward the cultural rather than the spiritual.

So, I waited for what I was most interested in seeing: the people who would be called up to participate at various times during the service.  And most importantly, the bar mitzvah boy himself.  As the rabbi and canter opened the proceeding the fixed camera providing the streaming captured the heads of my daughter and son-in-law.  Then at different points, they and their older son would ascend the bima along with my other daughter, husband and children.  And the grandparents, not forgetting, of course, my ex-wife.

While I sat in my chair in Michigan.

It is hard to voice my feelings, to find the right words.  I can say what I wasn’t.  I wasn’t angry or sad.  Nor was I happy.  Perhaps a little curious, just to see them, how they presented themselves, especially the children.

I suppose bittersweet comes close to capturing my feelings.

But only close.

I also felt, for what it is worth acknowledging, a confirmation of the decision I made, perhaps without full awareness of the implications, of my move a thousand miles away to northern Michigan.

Oh, I had good reasons then for the move.  My New York money buying less expensive Michigan real estate. My lifelong distaste for suburban living.  Carol’s strong desire to return to her home turf.  And maybe underlying all of that, my sense that no particular place claimed my affection.

Except the Brooklyn of my childhood.

And that is gone as is my youth.  I have visited the Brooklyn of now, and I am not at all sure I would be happy there.

So, I reasoned, if that is not too strong a word, that since no place called to me, any place other than suburbia would do just fine.

That judgment was largely correct.

But only largely.

It did not hold up all that well while I was sitting in my chair in Michigan watching my family celebrate the coming of age of my grandson.

While Carol, who always encouraged me to remain involved with my family, lay unaware in her bed.

My grandson did a fine job.

The camera did not provide closeups.

If it did, I would have seen  a confirmation of what I already know.

The final irony.

As if I needed proof of that ironic fact, it was articulated by my English cousin who spoke to me on the phone in the midst of the party later that afternoon.

“Stephen,” she said, “I see a lot of you in Brandon.”

Tuesday night, Carol not quite yet asleep.  She had a difficult day, getting a bath and hair wash she, as the aide related to me, really did not want.  I never witness these proceedings because they occur on my shopping day.

After a brief respite, winter has returned but so far only in the form of cold without much snow.  Spring arrives next week, but northern Michigan is often indifferent to what the calendar says.

Today at my daughter Kerri’s suggestion I downloaded an app that the kids use to video conference.  Only they are not conferencing, they are doing what teenagers do as the name of the app suggests.

It is called Houseparty.

Apparently, Brandon socializes with his friends using this app.  By arrangement this evening, we signed on.  I held my phone in front of me as if I were taking a selfie, and on the other end the phone was so placed as to capture the image of whoever was in front of it.  I congratulated Brandon on his successful performance and he gave me the thumbs up sign.  The conversation moved from him to his parents and then to Peter, his older brother.  Brian, his father, wanted to know what the streaming showed.   I explained the fixed camera provided a clear shot of the bima, but there were no closeups, and only a sliver of the first row of the congregants showed up, sufficient, however, for me to see half of the top of his head.

Peter wanted to show me a couple of pages of Old English he had downloaded.  I didn’t learn why he was interested in this particular material, but I am aware that he is something of a history buff.  He had written a translation above the Anglo Saxon words.  He has been invited to sign up for Honors English, the reading list for which includes Beowulf, no doubt in translation.  I don’t know if that is why he went online to snatch this piece of that ancient language.

Peter’s academic progress was the focus of the latter part of the conversation, and when it concluded I was again struck by the strange feelings engendered by this visit into this other world, the one inhabited by my daughters and their families.  But in particular, I recalled with a familiar pang how fond Carol had been of Peter.  She saw something in him that perhaps others had not, maybe his strong imagination so much like her own, or that he was just somewhat different, as she had been as a child.  She saw that he, like herself, was drawn to the natural world with an unusual intensity.

I told her about this digital meeting and about Peter’s exploration of Old English.  She offered a small smile.

It might have been because she remembered.

More likely, it was just a socialized response, a product of her having been taught manners by her Southern mother.

The dementia has not stripped that bit of good breeding from her.

I suppose that is a good thing, but it is also a reminder of how much else has been lost.

A cold Thursday afternoon in the ides of March, working in the library against the sound of books thumping as they are shelved.  As is usually the case on the afternoons I come here, there are no other patrons. 

I left Carol sleeping as she had been for the past few hours.  The aide will give her lunch when she awakens.

It seems like Long Island is reaching out to me to remind me of my connections to it.   Of course, this past weekend was filled with the afterglow of Brandon’s bar mitzvah, followed on Monday evening by the session on Houseparty.

Then, last night, the phone rang as it has been with increasing frequency lately, one telemarketer after another, but this time was different.  My caller ID told me that it was an old friend and colleague who lived in Fort Salonga, across the road from me and with whom I some times carpooled, and at others played tennis.  Our daughters were of comparable ages but did not develop strong ties with each other.

He called, he said, because last Friday at his retirement party he spoke with mutual friends, heard from them about Carol, and perhaps prodded by that sad news decided to get back in touch with me.

And I am quite glad he did.

We had a warm, hour-long conversation..  We spent some time talking about Carol, but then moved on to catching up, what our kids were doing, and what each of us was into artistically.  I was not surprised that his restless creativity has led him to try writing plays, as well as to continue his old passion for film making.  In the latter regard, he promised to send me copies of his recent documentaries.

But what sticks in my mind today as I sit here in the library are the memories our conversation evoked of the college at which I worked for thirty-five years.  He mentioned a number of colleagues who were at the retirement party whom I remember fondly and certainly would have enjoyed seeing again.

He also told the story, which I must confess I did not remember, of how I as the Chair of Humanities was instrumental in his being hired at the college.  It’s a great story, involving his wearing a suit he found on the road while riding his motorcycle.  He was wearing it when he strolled into my building, asked about a job, and was directed to my office.  I told him he must find a way to write it up.  Or maybe make it part of a film.

However, where all this leads, as it must, is to Carol.

For some ten years after his hiring, at that same college I met Carol, at that time what we in the education game called a non-traditional student, one well past the usual starting age.

She remembers—I should say used to remember—our meeting.  She was working as a tutor in the writing center, for which I was administratively responsible.  I came into the room, and as was my wont, sat on the teacher desk, lit a cigarette—still marginally acceptable in those days– and introduced myself.

And that is how this woman from rural northern Michigan, whose travels had brought her to Long Island, met this kid from Brooklyn.

It’s hard not to make what follows not sound like a line from a bad novel, something which both of us would be ashamed to write.  But nonetheless it is true.

Our attraction to each other, for whatever reason, was mutual and strong.

Strong enough that in memory it remains with as much strength as ever.

Even now.

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On a Date Certain

Tuesday night.  A long, tiring day that began with clearing six inches of snow off the driveway and then driving to town for weekly grocery shopping.  I’ve decided to add back the co-op grocery store, which in the interest of economy of motion, I had been skipping.  I stop there now for the organic veggies, interesting juices, such as blueberry, and, of course, the freshly baked cookies.

My decision to return to the co-op for part of our grocery needs was motivated only in part by what can be purchased there in contrast to the regular grocery store.  The fact is I had never been as enthusiastic about shopping there as Carol was.  She placed far more emphasis on being careful about the food she ingested than did I.  And prices at the co-op are high.

I recognize that my initial motivation to shop at the co-op again was to say hello to our nephew who now works there.  He had just graduated from Michigan State, and I wanted to say to him something like, “See what a first class college education gets you, unpacking and shelving food stuffs.”  I know, of course, he is just trying to earn the money he will need to live on when he begins his unpaid internship working for a local politician.

So, my intention was to stop there once, deliver that line, have a laugh, and that would be it.  As it turns out, his schedule and mine did not mesh, and I did not see him there after all.

But something strange happened when I re-entered the store after not having been in it for perhaps a year.

I felt a positive vibe.

So the next week, and the one after, I continued stopping there, just for a few items, while continuing to do the bulk of my shopping as before.  My attitude toward the store had changed.  It felt right to be there.

And then I understood.  Shopping there increased my hold on the then, on Carol as she had been, pushing back, for the while against the inevitable imposition of the now.

This made more sense when I told Carol the cookie she was having for desert, or the juice she was drinking came from the co-op.  She quite clearly responded with a big smile and a nod.  Of course, she was saying without words,”I always told you how much I like to shop there.”

Wednesday night.  No appointments, no errands, no phone calls today.  Carol in a reasonably good mood for most of the day.  In the quiet I was able to attend to the business of being a writer, researching possible markets for my work, and that was a pleasant change.

Forecast is for snow tonight ending about noon when lunch with the guys minus one is scheduled.  The one is now on the Alabama shore far removed from any threat of snow.

As I write this, I know the east coast is again being hammered.   I hope my daughters and their husbands all got home safely.

Had I kept my plans to attend my grandson’s bar mitzvah, I would probably be driving through this weather.  Maybe there’s some god looking down and declaring let’s give him a break.  He could use one.

I do worry about my own well-being.  Well, of course, I do.  But for me if I wake up feeling a little off my feed, as they say around here, as I have done the past couple of days, I tell myself I just can’t get sick.  If I do, who is going to take care of Carol.

When I make my way carefully over the ice and snow to cross the road to get the newspaper or the mail I feel my hip to make sure I have my phone in case I take a header as I did last winter when my feet flew out from underneath me and I landed on my back.  If I have my phone, I can call for help.

For Carol, that is.

I think of the picture posted on Facebook recently of a family member, a young man in his teens, smiling back at the camera his arm in a cast from a fall on the ice.

I simply can’t afford to be sick or injured.

Of course, something would be worked out.  But I worry nonetheless.

Carol as she usually does is sleeping on her back snoring loudly.  The dog has risen from her bed and wandered into the kitchen.  Sometimes she chooses to sleep by her food dish.  Maybe she thinks doing so will somehow cause the bowl to be filled.  If I am writing about the dog that means the well has dried up tonight and I will just stop for now.

Back at it on a Thursday evening.  Day began, again, with clearing the driveway in time for arrival of caregiver relief and to enable me to keep my weekly lunch date during which we had a good conversation about guns and the second amendment.  Somehow from deep in my memory I recalled that in Boston in 1637 that city’s government disarmed a group of dissenters from the prevailing religious establishment.  I retained that factual nugget from my research years ago for a historical novel I wrote but never sold.

Nurse practitioner came later in the afternoon and found that Carol continues in fine physical shape.

Before the nurse practitioner examined Carol we had a conversation concerning the meeting scheduled for tomorrow in my house to discuss care strategies.  The participants will be the supervisors of the hospital’s private duty program, the two aides who provide respite relief for me under that program, and a nurse who occasionally makes home visits, as she did last Friday to cut Carol’s nails.

In anticipation of the meeting, since it is deliberately being scheduled in my house so as to enable me to participate and provide my perspective, I wrote out what I would like these professionals to know.

To wit.  It is my firm intention to keep Carol living with me in this house for as long as I can.  From that intention everything else flows.  First, I need respite relief from my 24/7 caregiver responsibilities.  Thus, the primary help I seek from the aides is providing me time to do what I need or want to do.  In addition, I appreciate the aide’s assuming certain tasks that I cannot do well, such as giving Carol a bath and washing her hair.  One of the aides does that job much better than I can now manage, and I have no ambition to add that chore to my caregiver skill set.  Finally, I am happy to have trained medical people here regularly who can alert me to problems I might otherwise not notice or be aware of.

When I leave Carol in the hands of the aides, I expect upon my return I will find her safe and her needs well attended to.  All else is extra.  If Carol is sleeping, as she often is, and the aide wants to do some minor housecleaning, good, go for it.  I certainly won’t object.  If the aide wants to try to interact with Carol, read to her, play music, or just chat.  Good.  But if Carol is not interested, that is fine as well.

In the library after the meeting.  Young kids, perhaps first graders, are being coached into producing a puppet show version of Jack and the Beanstalk.  I find it somehow refreshing to be in the presence of such youthful exuberance, the giggles of delight.  Would that the world were so innocently delightful.

But it, especially my world, is not.

The meeting went well.  We covered the points I had laid out, moved on to an extensive conversation concerning products I should buy to provide better hygienic care, and discussed  strategies for improving interpersonal interaction with Carol, based on the aides’ experiences and what perspectives I could provide.

Fee fi  foe fum, I smell the blood of an Englishman comes across the room in  the teacher’s voice reaching but not quite arriving at a basso tone as the show draws to its close, followed by humdrum chore of taking attendance.

We also went over Carol’s meds with the idea of perhaps eliminating some that may not any longer be useful or perhaps are now even counterproductive.

The kids are energized by the show,  their high pitched voices filling the sedate, book lined aisles of the library.  A happy convergence of young minds and the world weary knowledge  stored between the stiff bound covers of the books.

This morning I stopped by my office and saw, as I have countless times before, the old mechanical perpetual calendar on my desk.  This is a device that provides three different wheels, one to change the day, one the date, and one the month.  I have had it on my desk for probably close to half a century, stretching way back to pre-computer days into the present, wherein I continued to turn those wheels to reflect the actual day.

Until I stopped doing so.

On Saturday, August 12, 2017, two days after our anniversary, three days before my birthday, documenting the point I knew Carol would no longer be climbing the stairs to our bedroom.  Actually, to be perfectly accurate, she had stopped dealing with the stairs some time before.  Although I joined her in sleeping on the couch in our living room, I continued, as I do now, to climb those stairs every day for my morning shower and change of clothes as well as my occasional sit down at my desktop computer.

On one of those mornings, I stopped by my desk, looked at the perpetual calendar, and decided to leave it as it was that day August 12, 2017, the date certain when I acknowledged Carol’s now insuperable aversion to those steps.

Another in a long line of concessions to the new now pulling away from the remnants of the old then.

The library is suddenly quiet as the kids have exited.  The only sound now besides my fingers hitting the keys of my laptop is the hum coming from the ventilation system.

That fixed date contrasts conveniently with the meeting this morning, the focus of which was to make the new now as comfortable as possible.  There was no talk of the future, probably because I had declared in my outline of what I thought we should talk about that my intention was to have Carol in the house with me as long as possible.  Therefore, any  talk of the future and the changes it might bring, for now, is premature.

As though that future is not to be.

A useful, but necessary, fiction.


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