Loomings

Late Sunday morning.  Carol is drowsing, almost asleep, then sort of awake.  I’ve been to the store to pick up the Times and Carol’s Sunday breakfast treat of a blueberry muffin.  After breakfast, she was convinced her mother was waiting for her.  Telling her that her mother is in assisted living and not expecting her did not pull her into the here and now.  She was fixed in some past moment.  Her eyes are now closed, and then she calls my name.  Sometimes she does that just, it seems, to assure herself that I, or maybe her memory of me, is around.  I expect she will fall fully asleep.

I’ve got classical music playing from the local public radio station in part to counter the wind outside, and in part, to provide background while I write for a while.

This morning I did what I always do upon rising from my bed on the couch.  I moved the pillow and blanket out of sight.

Carol, eyes closed, is yelling at some voice or action in her head.  Nothing I can usefully respond to.

Until today, I did not pause to think why I do this.  On a day when I expect a visit from somebody, moving my sleeping material out of sight makes a little bit of sense although I am sure my visitor would not care one way or another.

But I would.

And that is the point, I realized today, and explains why even on a Sunday when nobody is expected, I repeat this minor straightening up activity.

I want the room to look as much as possible as it always did.  That is not a new thought, of course.  But until today, I had not applied it to my morning routine.  Just another of the ways, big and small, I continue to struggle with my refusal to abandon the Carol that was.  Perhaps readers will tire of hearing that refrain, but it is the context within which I live, and it will poke its head out, unbidden and unwanted.

A piece of music has just ended, the wind continues to make noise outside, and Carol’s eyes are closed. The dog is sprawled asleep on the floor.

I realize that writing now as we move into Sunday afternoon is a good counter measure to  my loneliness.

 I can at least commune with myself.

This struggle between the then and now took a very particular shape these past few weeks.  Looming ahead was my grandson’s bar mitzvah on Long Island, N.Y.

The word “looming” might sound inappropriate.

But it is not.

It focuses quite precisely on this then/now dichotomy.

I pause.  The English professor in me objects.  “Dichotomy” is not the right word.  It suggests a division, a clean separation between two opposites.  Night and day.  Good and evil.

My then/now situation is not so clear.  It is this lack of clarity that argues for the applicability of  “looming,” which suggests an event or circumstance you would rather avoid.  I will try to explain how the word fit this upcoming event, which presented me with  a decision I would rather not have had to make, but one I could not avoid.  Whatever I did would leave me unhappy.

 

I could not simply book a flight as I did two years ago when I attended the bar mitzvah of the older brother of the one whose rite was coming up. Then, I was able to leave Carol at her mother’s house while I flew to New York.  Her mother was being taken care of round the clock by several caregivers, and Carol was still functional enough to not strain that set-up.

Her mother is now in  a care facility, so that option was not available.  This time I would  need to find a respite facility for Carol where I would leave her alone, and I would return to  an empty house.

Of course, she would not be literally alone, and the house would only be empty until she returned the next day.

This scenario in my mind was a precursor, perhaps, of what awaits me and her down the road.

Still, I shoved these negative thoughts, whom I imagine to be a shrouded figure in a black robe, sort of like death itself without the scythe, into a closet. I shut the door, and began working to make this trip possible.

I soon discovered that respite  facilities do not take reservations because  their business models,  reasonably enough, seek to have all beds occupied all the time.

But with some difficulty, I found a facility that could be persuaded by a non-refundable deposit to hold a bed open.  Because I was unable to book a flight much in advance,  I decided to drive. My route would take me through Canada into upstate New York with a stop in Syracuse overnight with very good friends, and then on to Long Island where I would stay for two or three days with other friends whom I’ve known since college, and on the grounds of whose house Carol and I were married thirty-two years ago.

I booked the dog into the kennel we use, arranged to have a hospital bed installed in the facility for Carol, reminded myself that I would have to put  a hold on our mail and stop the newspaper delivery.  I made sure I had my abbreviated passport for the passage into Canada, and even dug out a handful of Canadian currency from the last time we had taken this route.

The prospect of a long car trip, something I always enjoy, the stops with friends, and, of course, the celebration itself kept the door of that closet shut.

The black robed figure scratched and scratched.

Then one last problem arose, and forced that door open.

I got a call from the nurse at the hospital who was arranging for the ambulance to take Carol to the facility.  It would cost, she said, eleven hundred dollars each way.  An outrageous amount  for a twenty-four mile trip.

Ignoring  that shrouded figure, now fully out of the closet, I got in touch with the new chief of our local fire department, which has an ambulance, to see if he could provide transportation.  I had made his acquaintance some time ago when I enlisted his help to move Carol from the couch onto the hospital bed that had just been set up in our living room.   He had said, then, to call when I needed help.  I knew not to take that statement too literally, and that asking for the use of the department’s ambulance for a non-emergency trip would leave it unable to respond to an actual emergency.

It was a  long shot.

Of course,  with many apologies the chief said he couldn’t leave his department in such an untenable position.

Further efforts to find an alternative, private or public came up empty.

I could have sucked it up, and agreed to pay the outrageous price.

But I could not convince myself to do that.  The shrouded figure had a bony finger on my shoulder.

He had won.

And I decided to stay home.

I am afraid that some family members have concluded that I did not make the trip because I could not afford it.

That is not right, but I understand why they might think so since I did tell them that the exorbitant transport fee was what decided me against going.

If the situation were as simple as paying the fee would have caused me and Carol to live on peanut butter sandwiches for a month, then the fee would have been the cause.

But that was not the case.

If, like two years ago, I could have comfortably left Carol with her mother, both of them being taken care of by her family, I most likely would have unhappily paid the fee.

But that was not the case.

I could not comfortably leave Carol, not even remotely so.

The fee tipped the balance.

Here’s why.

One morning while I was wrestling with this situation,  I walked back into the living room after attending to some minor household chore, and saw that Carol was visibly upset, trembling and near tears.  As I approached her, she reached out, and said, “Oh, you’re back.”

I leaned over her bed, and she took my arm and pulled it to her.  We sat that way for some time.

And then I was able to get up and prepare our breakfasts.

It is probably hard for those not in my situation to fully grasp both the poignancy of that little scene, and its ambiguity.  In terms of the latter, I accepted that she recognized me for her present Steve rather than her memory of me.  Maybe that is false.  But I don’t think so.  And in any case, that is how I perceived it.

That made leaving her in a respite facility, as a precursor of a permanent move to such a place, like getting a kick in the stomach.

Or consider the following conversation from a few days later.

I came back into the living room from the kitchen singing nonsense words off key.

I do this whenever my mood dictates.  It’s my way of being cheery.

Carol looked up and with some effort formed the word “singing.”

“Yes,” I answered.  “But I don’t sing on key.” I paused.  “You like to sing, don’t you?”

She smiled, and we were, for the moment, together in the here and now.  I pushed the envelope to see how far we could go.

“When we first moved here,” I continued, “you joined a chorus in town.”

She looked puzzled.

“Did I?” she murmured.

“Yes,” I replied.

And then we were lost somewhere between now and then, her memory having failed to bring up what was, in truth, a minor episode, as for reasons I no longer recall she did not stay with that singing group very long.

I turned the conversation back to a firm foothold in the now.

“I’ve got a scone for breakfast for you.”

“Scones, they’re good.”

“And I went to the co-op and got you the pear juice you like.”

That brings a big smile, and for the moment, we are back together in the same time frame, hanging on to a shared memory.

And so it goes, from moment to moment, and day to day, like spent waves approaching our footprints in the damp sand  and then with the next incursion of  the incoming tide  washing them away .

Going to New York would have yanked me back to dry sand beneath my feet.

Perhaps a good thing.

But I wasn’t ready for it.

 

 

 

 

 

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To Hoist or Not to Hoist and Carol’s Journals

Another deceptively warm day, snow melting, sun out.  You’d almost think spring was around the corner. But it is mid-February in northern Michigan, and snow is predicted for early next week.

Today was, in fact, Valentine’s Day.  A few cards for us, or Carol alone, came in the mail the past few days.  Carol and I never paid much attention to this contrived holiday, and so it did not generate any feelings in me.  I suppose I could say that for us every day was Valentine’s Day.

I have started to listen to classical music streaming from WSHU, a station from Connecticut I used to tune to when we lived on Long Island. It is playing in my ears now as I write.  I don’t recognize the piece, but it has a strong romantic feel, perhaps in honor of the day

Music just ended.   It was from Wagner’s Tristan und Isolde.

The ebb and flow of this disease continues, oscillating within very narrow parameters.

The therapists, physical and occupational, were back today, and again made some, limited progress.  Got Carol on her feet and into the transport chair.  Then wheeled her into the kitchen with the idea of having her stand holding onto the sink.  When that seemed a step too far, they settled for having her eat her lunch, a protein bar, while sitting in the chair, and then back to her bed.

During these proceedings, I assisted both verbally and physically.  When she was sliding out of the chair, I helped hoist her back up.

Tired. Enough for tonight.  Resume tomorrow.

In the library this afternoon after snow shower this morning.

Teacher has brought kindergarten kids into the library and is offering a lesson on Washington whose birthday will be celebrated in a few days.  She ends by saying  that she shares the same birthday and wouldn’t it be nice if she were elected the first woman president.

I am thinking about chairs in the context of the narrow parameters in which Carol’s disease seems to move.

This morning after giving Carol her breakfast in her bed, I served myself mine sitting at the kitchen table.  I looked up, across the table, at her empty chair.  That image prompted me to remember my watching television last night alone in the green room, sitting in one of the matching upholstered recliners.

Those chairs contrast in my mind with the transport chair, an imposition into our household necessary to deal with the effects of Carol’s disease.  With heroic efforts, it might be possible to touch the top of the narrow band within which she is living so that I will be able on a regular basis to get her in and out of that chair.

The therapists are moving in that direction.   They are not sure that they will be able to get to the point where I alone can do what now requires both of them, namely, to move her from her bed into that chair.

They suggest a device called a Hoyer hoist, which would literally lift her out of bed and deposit her into the chair.  Once in the chair, perhaps supplemented by another recommended device called a pommel cushion, which would prevent her from slouching down and off, I would be able to wheel her to the breakfast table.

And the tv room where we could watch television together.

Sort of.

For she would not, I am sure, really process the visual images on the tv screen, although she might do better with the audio.

That might be enough for her to get some enjoyment out of the upcoming Kentucky Derby, advertisements for which have already started airing.  Carol, an excellent rider herself, loved horses and horse races.  We used  to take walks along a dirt road next to a fenced in pasture, and she always had an apple or two with her to offer to the horses, who would trot over to us and take the fruit out of her hand, all of that pretty extraordinary for this city boy, whose experience with horses was of the wooden variety, to witness.

 

Sunday night. I alternated my tv viewing between my continuing binge watching of Peaky Blinders, a kind of British Sopranos, and the usual Victoria, which just manages to be on the right side of the balance between historical drama and soap opera.

Some time ago I came across Carol’s handwritten journals in which she recorded her progress on the fiction she was writing.  For reasons I now will never be able to ask her about, there is a huge gap in these documents.  Both start about 2005 and continue into the next year.  One stops there while the other picks up for a few pages seven years later in 2012.

That there are two journals essentially covering the same period does not surprise me.  I long ago understood how Carol’s difficulty with organization and fear of losing things produced duplication of storage.  Even when she worked with word processing, I could not convince her to simply save the new version under the same file name with which she had opened the document.  Instead, she would save each version with a slightly different name by adding a number or date, thus making each a new file. The result was a long list of files that were essentially the same except for a little new material in each.

So the two journals pretty much covering the same ground is, if anything, predictable.  I did find them in different locations.  But the gap in the one before picking up again seven years later  is not explained by this organizational difficulty.

To the best of my recollection those intervening seven years were unremarkable, nothing of any import having occurred during that time.  So why she abandoned and then returned to that journal will have to remain a mystery. Also unanswered is why the continuation did not last very long.

As I read over the above to prepare its transition from journal to blog post, I believe I have the beginning of an answer, which I will explore in the journal and hope to have it appear in a blog post when its turn arrives.

What I found most interesting besides this gap were the comments concerning her aspirations as a writer.

I had known, of course, that Carol wanted to succeed as a writer. I did not know the intensity of her ambition, revealed in her journals. I probably took too literally her sometimes expressed  concerns as to how she would handle celebrity as a writer should it come her way.

Which, I now more clearly understand, did not mean she didn’t want the recognition.  She did.

But she also wanted to use her writing to document the wrongs she saw.  I was struck by a passage in the journal where she argued with her mother’s insistence on always being “nice.”  The world was not nice, Carol thought, and her stories would be honest in representing that fact.

In lesser hands, this motivation could well lead to failure as a writer by letting the message sink the story. But Carol was too good a storyteller to let that happen.  Her stories do deal with the harsh realities of disadvantaged people, whether they be unsuccessful farming families, migrant Mexican workers, or, and most especially, Native Americans.  But they do not preach.  They just reveal.

I was also unaware of how she struggled to do what she loved, which was to write.  In the journals, which for the most part say nothing about me, she expresses her frustration that I would never understand her difficulty overcoming her Attention-Deficit Disorder.  I simply do not remember much discussion of that problem, perhaps a few passing remarks, widely scattered.

But apparently she wrestled mightily with it. The journals provide some support for that idea in the sense that the notes meant to pull together her ideas for her fiction were more like stabs rather than a smoothly developed progression.

I guess I did not pick up on whatever clues I might have because the product she produced was so damned good that I just assumed it did not require more than any good writer’s self-editing skills.

It might also explain, although there are certainly other explanations, why she could never master longer canvases, such as a novel, or the non-fiction book she so much wanted to write about Sarah Lane, who upon the death of her husband became the first woman keeper of the local lighthouse.  Carol did a tremendous amount of research, but could not get a handle on the possible shape of the book.  She sought my help, and I tried to organize her material for her, but probably because it was my approach rather than her own, that did not work.

I suggested she try to write it into a novel, thinking the fictional approach might be easier.  I don’t believe she ever started down that road.

Of course, I now see what I didn’t see, and which, for her own reasons, she did not make clear to me.

ADD.

There is also just a hint of the predictable friction that can occur between two writers who happen to also be lovers.  I don’t think we competed.  Our egos were too strong to feel challenged by the other.  Rather, because we were so in love with each other, critiquing each other’s work could be problematical.  Not that we wouldn’t offer honest assessments.  We did.

But we didn’t always agree with those assessments.

And finally, though, we each sought the approval of the other.  If nobody else in the world liked what we wrote, it would be nearly enough if the other of us did.

I had to add that qualifier nearly.

But the point remains.

Among all the qualities of our relationship I miss, our shared passion for writing is one that leaves a huge void.

After another faux spring day with temperatures approaching sixty degrees, winter decided to return today with a mixture of freezing rain and snow predicted for tomorrow as we head into the weekend.

A quiet evening.  Carol has been sleeping a lot today, as has the dog.  I couldn’t get interested in anything on television, nor did I feel like reading.

So, since it is too early for me to go sleep, I might as well write for a while.

I am feeling unusually lonely.  Nothing dramatic has changed to account for this mood.

But if not dramatic, there seem to be a few contributing factors.  One is a discussion I had with the physical and occupational therapists yesterday.

They pushed me hard toward ordering that hoist, the device that would enable me to lift Carol off the bed and into a wheelchair.  They had succeeded once again in getting Carol on her feet for a bit and then into the chair.  But when they tried to get her to sit more upright, the situation deteriorated.  Carol slouched and I had to help pull her up and off the chair, so they could maneuver her back into the bed.

Perhaps that is why they started to promote the idea of the hoist.  They described how good it would be for Carol to again move around the house, albeit in the chair.

That had some appeal for me.

But accommodating this device in our living space would require creating space for it.  It will not fit in the room where the bed now is without removing some furniture.  The likely candidate would be to detach one leg of our L-shaped sectional.

Then where would that go?

I found myself losing myself in these very mundane considerations.

And as usual, they were masking my deeper concerns.  Still, I agreed to have them begin the ordering process.

After they left, the mother/daughter housecleaning team came and after they were pretty much done I talked with them about the hoist.  They’ve been coming to us for a long time, and I was quite comfortable discussing this matter with them, as they were easy about offering their views.

We considered several possible landing places for the sectional piece.  But for each there was a problem, a narrow doorway here, too many turns on the staircase there, another narrow doorway upstairs leading to the unused room that had been Carol’s office.

No doubt professional movers could work something out.

But these issues, I realized, were not primarily what was bothering me.   Upon calmer reflection, I did not see the huge advantage that the therapists had envisioned.  Even if I were able to use the device to get Carol into the chair, she would no doubt initially, and perhaps permanently, resist the process.  With her intense fear of falling, being suspended in the hoist, persistent fear, if not outright panic, is quite likely.

In short, I did not see enough positive outcomes to make this lift idea attractive.  I also realize that the therapists, through their own comments, see obtaining this device as a way of justifying continued Medicare support because they would be training me to use it.

Without that justification, and with no clear sign that their efforts were producing a quantifiable result, they might not be able to continue getting paid.

That is a problem.  But not a reason to agree to  getting a device for which I really see issues on the one hand,  and not much to be gained, on the other.

I relayed my decision not to get the hoist to the therapists.

They came one more time to have me sign off on their ending their efforts.

I did so with some relief.  The therapists’ push for progress, justified perhaps in their minds as necessary for them to provide service, had influenced my judgment as to what was right and good.

For Carol.

For me.

At this time.

 

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Henry, William and Rowing

Winter has returned after a brief hiatus.  This morning after breakfast, I cleared five or six inches of snow off the driveway.  The forecast for the next week or so is more or less snow every day, nothing spectacular, but consistent.

It is Friday night approaching midnight.  Carol woke up a little combative but settled into a pretty good day after that.  I look over at her birthday roses, and see that they are wilting. In all honesty my care of them was perfunctory, adding a little new water every couple of days and ignoring whatever was in the little packets the florist had instructed me to add to the water.

That thought leads me to what follows.

Years ago when we took a car trip to Salem and Concord Massachusetts, the home turf of a number of my favorite writers, I bought a souvenir T-shirt.  On its front, the face that Nathaniel Hawthorne said belonged to the ugliest man he had ever seen, stares out under one of his strongest recommendations.  “Simplify,” it says.

With that word, Henry David Thoreau preaches his antidote to what he perceived to be the misery of his society where he saw the masses leading lives of “quiet desperation,” suffering from the disease William Wordsworth had earlier diagnosed in a sonnet as wasting our powers with too much “getting and spending.”

All of which is an unnecessarily literary preface to the fact that I have simplified my life, not for the perhaps more substantial reasons of Thoreau and Wordsworth, but out of necessity.  Given my caregiver responsibilities and time constraints I cannot tend to many things I would otherwise take care of.

I do manage the getting and spending in the mundane terms of the household cash ebb and flow, paying bills, and keeping an eye on disbursements from my IRA.  I recognize that both Henry and William had more fundamental ideas in mind, but this is where I am now.  I do the cooking, laundry, and necessary cleaning.  Otherwise, I subcontract or ignore the rest.

So as winter approached instead of hauling out the leaf blower, I contracted with the local company that I used to hire only to finish the massive job of clearing away the mountain of leaves layering our heavily treed property.

I gave up keeping the bird feeders stocked.  Our feathered friends were on their own.

For now, I will probably continue to snow blow the driveway, but if that turns out to be too time-consuming or onerous, I will hire help for that chore.

These extra expenses are not particularly troublesome since our entertainment budget, once fairly healthy, has now dropped to about zero.  Instead of going out to eat or attending concerts and movies, money goes to do things I no longer feel I can do .

As with so many other changes, this one parallels how I have come to see myself.  I am primarily a caregiver.  Responsibilities associated with that role take priority over everything else.

I get no gratitude from Carol, nor should I expect any.  I suppose the dog is happy that she is fed and let out to do her business as necessary.  Friends tell me they respect what I am doing, but they cannot have any idea of what that really means.

I’m not talking about needing a pat on the back.  After all, keeping Carol at home with me for as long as I can has been, and remains, my deeply held preference.

I am only holding up a figurative mirror to look at myself, to see what I have become through the lens of what I can and cannot do.

What comes back to me from that activity is clear enough.

What follows, though, remains shrouded in uncertainty and ambiguity.

Super Bowl Sunday night after a snowy weekend requiring several sessions behind the snow blower to clear the driveway.  I watched the game on the big screen tv downstairs while Carol slept.  Because of my interest in football, she sometimes tried to watch games with me, but she never really succeeded in sharing my enjoyment.  I don’t think she objected to the violence of the game, for she loved watching boxing.  I suppose learning the rules and strategies required more effort than she wanted to invest.

The question now, of course, is moot.

We are both accommodating ourselves to the hospital bed.  As advertised, it makes certain activities, such as raising Carol to  sitting position, easier.  The sleeping surface is considerably wider than that which the sofa offered, and Carol sometimes gets herself into odd angle positions, but for the most part she does sleep well enough in it.

I have now, however, discovered one of the reasons I delayed for so long in obtaining  the bed, and why in spite of its advantages, I am still unhappy with it.

I thought my reluctance was based on the presence of the bed introducing an unwanted change in the feel of our shared living space.

That much was, and is, true.

But I now understand that there is a deeper level.

When we were both sleeping on the sofa, it was possible for me to position myself in such a way as to be able to be in close physical proximity.  Our sofa is an L-shaped sectional.  Carol occupied and slept on one leg of it.  During the day, aside from attending to her needs, I did  not spend much time on the sofa.  But sometimes, I would bend myself around the corner of the sectional so that I could put my arm around her.

I cannot do that with her in the bed.  It is placed against the wall opposite the sofa.  I can sit on the arm of the sofa and reach over or through its railing, but doing so is awkward.

Before, I typically slept on my leg of the sofa with my head away from her and my feet encroaching into the corner section.  In the mornings, I would awaken, reverse my position so that my upper body was now on that corner section, and I could reach her to hold her hand, or stroke her cheek or hair.  Sometimes she objected to this attention, but most times she accepted it happily, or so it seemed.

I now see that my ability to do that preserved the fiction that we were still living as we had, in the shared intimacy of husband and wife.

The bed has removed that fiction.

In it, she the patient, I the caregiver.

Woke up to a steady but light snow this morning.  I decided to forego my usual Sunday morning jaunt to the store to pick up the NY Times along with a muffin for Carol and whatever else we might need until I do a full grocery shopping. Just didn’t want to deal with the snow although there wasn’t that much accumulation.  Read the paper online, and gave Carol her ordinary breakfast.

It’s Sunday night as I write this.  Watched Victoria and Queen Elizabeth’s Spies.  Carol, of course, dozed in her bed.  Even the dog chose her bed instead of coming into the tv room with me.  I’m getting used to these solo television watching occasions.

But not happily.

Every once in a while a line from some source will jump into my consciousness for no particular reason, or at least no reason I can identify.

That happened yesterday.  I don’t now recall what I was doing at the moment, but whatever it was I am fairly certain it had nothing to do with this sentence that flashed itself into my consciousness.

“So we beat on, boats against the current, borne back ceaselessly into the past.”

That is the last line of F. Scott Fitzgerald’s The Great Gatsby.

Although decades ago, I taught that book in an American Literature survey course, and although I admire it immensely, I have not thought about it in a very, very long time.

And yet, yesterday, that line popped into my consciousness.  No, that’s not exactly right.  I did not have all the words, or even most of them.  Rather, I recalled that the novel ended with something about a boat and rowing.  I then did what we all do nowadays, rather than digging the book off whatever shelf it is now on, I Googled something like “Gatsby rowing.”

And the line appeared.

This is not the place, nor do I have the energy, to suggest the line’s relationship to the novel,  why Nick Carraway, the narrator, is made to say it.  Rather, taken out of its context it speaks powerfully to me in my situation.

It captures the pull backward that I deal with numerous times every day whenever some thing in our house reminds me with considerable force of the life we have left behind, be it the Victorian pictures of a girl reading a book on the wall in the downstairs bathroom, or the wooden sign announcing “Baths 5 Cents” on the wall of the upstairs bathroom, both chosen and installed by Carol, the one expressing her own particular version of feminism informed by her love for reading, the other a humorous reminder of her historical sensibility.

And of course, there is the more serious pull of those moments, far enough between, but powerful when they occur, when with some gesture, or word or two, Carol for a moment is again herself.

That happened a night or two before, and again last night, when on each occasion, she said in a very quiet voice, “I love you.”  I permitted myself each time, to savor the moment.  It would have been wiser, perhaps, to discount it, to understand its ephemeral nature, how impossible it is to be sure of its significance.  She might even have been declaring her love for the me in her memory rather than the me in front of her.

But of course emotions trump rational thought.

And so, for the moment, I let myself in my little rowboat be borne back by the current into our shared past.

The larger question is how hard do I want to row against that current.  Do I, in fact, want to best it and begin to leave that past behind me.

Fitzgerald is no doubt suggesting that so to do is impossible.  We may beat against the current, but it will prevail.  Perhaps we will make a little progress, only to be thrown back.

Thus far, I see Fitzgerald’s words as an accurate representation of my situation.  The metaphor is apt: rowing against the current is an arduous business, forward movement bought with the expenditure of considerable muscular energy. That thought reminds me of the time my father took me fishing in a rented rowboat on Sheepshead Bay off the south coast of Brooklyn, and only with great difficulty rowed us back against the outgoing tide.  Shortly thereafter, he bought an outboard motor he would attach to the rented boats.

For me, now, it would be the expenditure of emotional rather than muscular energy to provide the movement away from the past.

I can also see that if the past is dominated by pain or disillusionment, as may be the case for Nick when he offers these words, then the point is the difficulty of putting some distance between you and the occasion of that pain or disillusionment.

Moving from a painful past is complicated when the pain is, as is often the case, tied up with something very good.

Which is where I am.

I do not want to forget my past with Carol.

But remembering it, and knowing how it is irretrievably gone, is it own kind of pain.

Nor do I know what exactly I am rowing toward.

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Of Living Room Ambience and a Box of Picutures

The weather has warmed for the while.  It rained pretty much all day, and much of the snow is gone.

Carol is  sleeping noisily on the couch with her mouth open.

A busy day of problem solving punctuated by a visit from the nurse practitioner along with a student doing her practicum to check on the possibility, raised by one of the aides, that Carol has a urinary tract infection.  They did not find any evidence of that.

With a fair degree of reluctance I agreed to get a hospital bed for Carol.  This is a huge step.  I have been resisting for emotional, not practical, reasons, but practicality finally won out.

On the surface, my resistance was aesthetic.  I did not want to change our living space into a medical facility.  To be sure, there are medical devices scattered about, the travel chair near the steps reminding me of when Carol would ride in it, dismount, and climb to our bedroom, the cane in one corner, the two walkers in another corner, the grab bars in doorways and on walls leading to the steps, the shower bench and stool in Carol’s office, all of these obvious indicators of our attempts to deal with the disease’s progressively debilitating effects.

But in spite of them, somehow from my perspective they did not change the ambience of our living space.  They were like the dog’s hair shed onto the floor, annoying but not visually offensive enough to change the character of the rooms in which they are stored.

The bed, though, is a different story.  It will dominate the living room simply by virtue of its size.  We might be using the sofas as our beds now, but they are still sofas.  The hospital bed does not belong in our living room.  The other items can be removed and stored, for they no longer serve their purpose.  But the bed is its own purpose.

Like the sofa, the end table, and the cocktail table that provide the configuration of the living room, the bed is itself a piece of furniture.  It belongs in a bedroom.  Installed in our living room it imposes, it dominates, it demands its presence be recognized as signaling something profound.

Its presence states that we are crossing a line in our long journey away from the then toward a new now, one from which there is no turning back.

The misplaced bed, no doubt, will remain where it is until its occupant no longer needs it.

Another January teaser day, temperatures reaching toward 50, the sun out, and greying snow melting.  My head knows this is a mirage like the oasis in the desert of the winter, but as folks around here say, sure, but enjoy it.

In the library, back from a quick hop to town to buy a half dozen roses, three red, three white, for Carol’s birthday.  I declined the offer of a clip-on card on which to write a note.  Since she can no longer read, I didn’t see the point. 

I placed the flowers on the lid of the wood stove I decided not to use this winter, as one thing too many.  The foot of the hospital bed nudges the stove, so that the flowers will be in Carol’s direct line of vision. 

I directed her attention to them and was rewarded with an appreciative smile.

Last night as I came down the stairs after brushing my teeth, a title for a piece of writing jumped into my head: A Tale of Two Toothbrushes.

So here it is.

One toothbrush in the upstairs bathroom.

The other one in the downstairs bathroom.

Both are inexpensive battery driven models I bought some time ago, one for each of us.  Mine is the one upstairs.  Carol’s the one downstairs, sitting next to her toothpaste on a shelf in that guest bathroom .

However, I have pretty much stopped trying to brush her teeth with her electric toothbrush.  I have, instead, switched to disposable swabs.   But the electric toothbrush remains in the downstairs bathroom, and  sometimes I use it instead of mine upstairs.  Each night when I am ready for sleep, I decide which toothbrush to use.  If I am tired, I will opt for Carol’s.  There is no reason to worry about germs.  Still, it feels a little odd because as in so many other ways using her toothbrush is an acceptance of the now.  First because it is hers and she no longer uses it.  And second because to employ that toothbrush I have to do so in the guest bathroom.

On the other hand, when I haul my weary carcass upstairs into the main bathroom, and take my toothbrush and my toothpaste off my shelf in that bathroom, I am immersing myself into the then.

Today was Carol’s birthday, and I was pleased that her sister Jane came by to wish her a happy one and to give her a card.

In all honesty, I don’t think her birthday registered much in Carol’s mind.  She smiled at the flowers I bought for her, but thereafter did not seem to pay them much attention.  Similarly, she responded only briefly when I showed her the few cards that arrived or relayed the digital best wishes from an old New York friend, a fellow Aquarian.

So tonight, after a day uneventful except for Jane’s visit, and otherwise perfectly ordinary including my going to town for groceries. I am in my chair and Carol has fallen asleep.

This past weekend, Laura,our sister-in-law brought a sizable lidded plastic box containing photos that had been among Carol’s family’s material I had given some time ago to both Jane and Laura. In going through all of that stuff, Laura had found a trove of photographs specifically relevant to us.

I took a brief look at the contents of the box, which I had set on the dining room table.  The window in that room faces west, and as I looked up from the box and through that window I noticed how the late afternoon sun emphasized the gray grime on the glass.

I know that grime would have irritated Carol.

One of the few things we disagreed about was the need to keep windows clean.  As far as I can remember the windows in the apartments in Brooklyn I lived in both as a child, and as a young adult, were never washed and as a result always wore a layer of grime.  If you wanted to see clearly, you’d open the window.

I have no idea how often the windows in Carol’s house were cleaned.  I do know that her heating engineer father had the windows of the house he had had built permanently sealed shut to keep out as much cold air as possible.  How clear they were I do not know, so I cannot assume that their relative cleanness had anything to do with Carol’s preference in this regard.

However, what I do know is that Carol was an intensely visual person.  That point was driven home with considerable force by the sheer volume of the photographs in the box that Laura brought to me.

Of course, I always knew Carol loved photography.  We have enlargements of some of her photos on the wall.  And there are about half a dozen substantial photo albums on an otherwise empty bookcase in our basement apartment.

But what is now clear is that the albums represent a screening process that selected those shots worthy of being saved.  What was in the box, however, was the raw material.  I do not know if pictures of the same places and events are in those albums, so that the box material is the rejects.

I don’t think so.

Because what’s in the box, primarily, are the envelopes from that pre-digital age  that came back from whatever developing service we were using, which provided two copies of every picture.  And there were no single prints, suggesting that a picture had been removed and placed in the album, leaving its mate in the envelope.  So I don’t know why none of these pictures, which were shot between 1999 and 2000, as indicated not only by the obvious ages of the people, most easily established by those of our daughter, but also by the dates stamped on the envelopes, were put into an album.

I did not immediately dig into this material.  I was apprehensive.

I would be immersing myself in our past, and I was not sure how ready I was so to do.  But I began, tentatively, and then gained some confidence and moved through the envelopes with some pace.

As I flipped through the pictures, I found myself largely unable to identify locations other than the ones that clearly showed themselves to be our house and grounds on Long Island. The bulk of the others seemed to be from our various vacation trips, but try as I would, I could not remember where we went those two years.  Since there were a lot of beach and water shots, I guessed Cape Cod.  But not all the water pictures suggested ocean front locales as there were ones showing Carol and Danielle in a canoe.  Possibly that was from our trip to Isle Royale, and there were a couple that were taken from what appeared to be the seats in a boat such as the one we took across Lake Superior to that island.

Still others in a different part of the box were very obviously shot on our trip up to the Bread and Puppet summer festival in Glover Vermont.

Or our drive out to South Dakota.

I realize as I tried to locate the where of these pictures, I was distracting myself from what I had feared.

That I would too forcefully be immersed in the then, and at our most relaxed and happiest times.  We both loved to travel, particularly car trips.

Even when our vehicles were of questionable reliability such as the aging Corolla that carried us up to Vermont for which the mountains were something of a challenge.

But then I realized something else.

Carol appeared in very few of the pictures.

Naturally enough.  She was the photographer.  Her subjects were our daughter, occasionally me, and predominantly whatever was interesting in the scenery, whether it was the buffalo herd in South Dakota, or the whale somewhere in the Atlantic, and in fact, water anywhere, she always loved water.  One of the reasons we bought our present house is the distant view we have of the east arm of Grand Traverse Bay.

So for my first excursions into these pictures, I was spared the trauma of seeing more than a handful of images of Carol in the prime years of her young motherhood

Later, as I dug further, I did come into another batch that was largely of her.  I could not pin down the circumstances but there they were.

They hurt.  But not as much as I thought they would.  Even now, as I hear Carol’s labored breathing in her sleep, reminding me of the now, I find myself somewhat better able to deal with the then.

I suppose that is some sort of progress.

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Between Past and Present

Near midnight on Sunday.  Watched a two hour season premiere of PBS’s Victoria alone, although the dog slept through the show, lying, as she usually does, on the floor in the tv room.

I did think of inviting Carol to join me, as we always watched Masterpiece Theater together on Sunday nights.  And she had a particular interest in Queen Victoria.  One of the last books we got for her was the new, massive biography of the queen.  When it was clear, however, that she could no longer process words on the page I read the book aloud to her until her attention flagged and she lost interest.

So  the combination of our past habit of watching this show together and her interest in Victoria, made me consider asking her to join me.  A little reflection, though, convinced me to not even try.  Getting her into the room would have been a formidable task, and then, even more important, I remembered that she could no longer focus on the audio and visual stimuli offered by the television.

This morning upon waking, Carol asked, “Steve, are you here?”

That brought a silly smile to my face.  I was convinced she was aware that she was directing her question to the present me, not the remembered me.

I’m not sure why I was so sure.  It was probably something in the tone of her voice.  It had a certainty to it as though she was fairly certain that I was nearby, the actual physical me, and not the shadowy me of memory.

This incident fits a recent pattern.  For the while, her condition seems to have stabilized, including occasions of what appear to be a stronger connection to the present moment.

These moments remain scattered and outnumbered, to be sure, by the times when her mind seems elsewhere   In fact, today she was having persistent conversations with person or persons unknown.  These appeared to be delightful interactions, accompanied by laughter

But they clearly had nothing to do with me.  Or the dog.

And herein is the horrible dilemma provided by this disease.  The teasing, tantalizing moments that trap me into responding as though they indicate some kind of return to normalcy.

They do not so indicate.

I know that.

But I let myself be fooled each time anyway.

Again, late, and I’m tired.  This Monday was Martin Luther King day.  No mail, few calls.  I spent a fair amount of time setting up appointments for matters I have been ignoring, such as to the periodontist, or to the elder attorney with whom I want to explore the possibilities of Medicaid for Carol. 

I’ll scratch out what I can, continuing where I left off.

A day later and Carol woke up with an intensified fear of falling.  I had to reassure her verbally several times, and then when those measures failed, I positioned myself lying down on the sofa so as to be able to hold her hand or stroke her cheek to reassure her that she was perfectly safe.

When this fear persisted even after breakfast, I realized I had not yet administered her morning meds.  Perhaps that had something to do with the continuing problem.  In any event, after a while she seemed to settle down without the fear.

This is the up and down that people talk about, the good day/bad day syndrome.  I honestly don’t know if the good days are worth the inevitable bad that follows.  And to talk about days is a misnomer.  The changes are not that regular, predictable, or evenly spaced out.

After this rough start, the day then moved to a kind of ordinary pattern during which I offered, and she accepted, BLTs for lunch.  She didn’t sleep as much during the afternoon as she usually does, and then ate a good supper of salmon, rice, and yellow squash.

Later in the evening, I asked her if she wanted me to read one of her stories to her.  I had put two journals containing her work on the table next to the sofa so that the aides could read to her.  One had tried, but told me that Carol had no interest.  Nonetheless, I asked her tonight if she would like to hear her story, and she assented.

I read “Wings to Follow,” all of it, and she listened attentively, smiling at lines she apparently remembered.  I’m not sure when, or even if, I ever read the story, at least in its finished form.  Reading it tonight reminded me, if I needed reminding, how good a writer Carol was.  Simply put, this is a hell of a story.  Two Native American sisters, one runs a bar, the other is planning to travel, somehow, to the Upper Peninsula of Michigan to their mother’s village.

It’s all done so well, the simple plot, the relationship between the sisters, the characterizations, particularly of the older, bar-keeping sister, the language, and the ending.  I am a student of endings because they are so hard to get right, and feel so good when they are, but so often do I see ones that simply do not satisfy.  This story ends on a perfectly pitched note.

I am offering all of this, not as Carol’s husband but wearing my writer/professor’s hat.

A curious coincidence needs to be mentioned as well.  At one point, the older sister mocks an arrogant teenager wielding a knife, and uses the word “mumblety-peg.”

The  title of my just published story.

Which I am reasonably sure Carol never read because I wrote it before I met her.

If I believed in some mystical forces, this would be proof.

As she was getting ready for sleep, she said she was glad to have me.

That’s as good as it is going to get.

I know that.

And it will not last

I know that as well.

But maybe the lesson here is simply to live in the moment, knowing that it offers no guidance to the next moment.  That recognition, if I can hold onto it, will be a huge help

After lunch the next day.  I  read a few more pages  of  Love Medicine, a section describing Grandfather’s dementia which in some ways  could be applied to Carol.  He has little memory, and what memory he has is long term so he confuses the past with his present.  There is one persuasive difference, however, between Erdrich’s imagined picture of dementia and Carol’s actual condition.  Erdrich says Grandfather’s loss of memory is a gain in that it enables him to forget things from his life he’d rather not remember.  Carol, however, draws from the reservoir of her long term memory things she likes to recall, such as that she was a lawyer.  In fact, she doesn’t use the past tense, she says she is a lawyer, and tonight she was talking about having to work.

For the past couple of days, we seem to have returned to a version of the two Steves.  This time it’s a little more subtle or nuanced.

First it comes on the heels of a few occasions when Carol seemed very much in the present moment, such as when I was reading to her.   During these occasions, I could easily permit myself to enjoy what is essentially a fiction or an illusion, that for those few minutes she was herself, and in being herself, she was fully aware of who I was.

But when I came home from an appointment in town yesterday, the aide said that Carol had been asking for me the whole time I was gone.  And then last night, and again after breakfast this morning, she called my name literally every few minutes.  I would respond, ask her what she wanted or needed.

She didn’t say.

I would return to whatever I was doing, reading the paper or doing something on the computer, and again and again, every few minutes, she would call out for Steve.  I stopped what I was doing, and went to sit next to her, take her hand, try to see what was going on in her head.  When again she asked for Steve, I told her I was right there.

She seemed to accept that I was Steve.  But I could not shake the idea that even though she acknowledged I was Steve, even though she indicated she understood that not only was I Steve, I was also the husband she was asking for, that in spite of these confirmations of who I was, she was still looking for some other Steve.

She would accept the present reality of me as Steve.

But in some way she was still conjuring up, and hoping to see, the Steve locked in her memory.

Her birthday is next week.  I will get her roses.  She will even in her confused state enjoy them.

But I am not sure she will know which Steve gave them to her.

I just have to live with that.

 

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Two Writers and a Deity Named George

Caregiver relief aide is here.  I am up in my office not caring to deal with cold and snow to go someplace else.  The dog is confused.  Decided to stay downstairs.  Not sure if I should feel slighted.

Yesterday, I received an envelope containing three author copies of Rosebud, a nationally circulated literary magazine in which appears my short story “Mumblety-peg,” first written as one of a series of linked stories in 1979. The idea was to produce a kind of fake novel and publish it as a book.  That never happened but over the years I revisited the individual stories, revised them and sought publication, a process that has been largely successful.

This story is one of the last to find a home Interestingly, it is the one that came closest to being a huge success as it made its way up the slush pile (heaps of unsolicited submissions) of the Atlantic Monthly, all the way to the desk of the esteemed fiction editor C. Michael Curtis who sent me a handwritten rejection note, saying only the story was too dark for him.

I mention all of this as preface to the sad fact that I cannot really share this late coming good news with Carol.  I, of course, mentioned it.  Held up the magazine in front of her eyes, and received the slightest hint of a response.

Had Carol not been much involved in my writing career, her disease caused indifference at this time would not strike such a sour note.  But just the opposite is the case.  If we didn’t originally get together through writing, writing surely was a shared passion, and we were intimately involved in each other’s careers.  Mine was further along because I am ten years older and had started sooner.

But she quickly established her own standing as a fine and award winning short story writer.  To the immediate point, however,  she was also an excellent editor and gave all of my work the most thorough going over, complete with marginal notes in her beautiful hand.  Naturally, I didn’t always agree, but that is any writer’s privilege, and she would return the favor when I made suggestions concerning her work.

All that, of course, is now lost.

When her disease hit her, she was trying to market her stories as a collection as well as conquer the challenges of a novel.

I had just finished writing a new novel.  At that time, she did not have the ability to provide editorial response, but she was an active cheerleader.

That, too, is gone.

We were very different writers in many ways.  In part that was the case because our backgrounds were so dissimilar, I from an urban environment, she having grown up on a farm.  And of course, gender probably contributed to the differences as well.  She was far more visual than I while I probably concentrated a bit more on plot.  Our methods contrasted as well.  She had to have long stretches away from all distraction while I was very used to working in short snatches, much as I am doing now.

We respected each other’s approach to writing and, for the most part, did not try to impose our ways or interests on the other although when asked for an opinion we offered what each thought was the best from our own perspective.

We had separate personal libraries.  When we had floor to ceiling bookcases installed in the dining room on the wall that led through a doorway to the kitchen, we each took half.  We didn’t discuss that decision because it was perfectly natural.  We simply did not read the same kinds of books. In fact, I don’t think I can recall more than a handful of instances, if that many, when one of us would pick up a book that the other had enjoyed.

We did read each other’s work and tried to put on a critic’s hat and ignore the inevitable intrusion of emotions arising from our relationship as husband and wife.  That was not always an easy path to walk.

For both of us.

In looking through her journal that I found in her out building office a while ago, I saw a couple of places where she expressed her sensitivity to the pressure she perceived came from me to work as a writer more as I do.

Still  I think we managed it quite well.  Our respective talents made that a bit easier.

The receipt of my author copies brings back all of this, our shared passion for writing and support for each other’s work.

It creates a void for me that will not be filled.

Late on a Thursday night of a day that was mostly okay, especially in terms of the weather.  After day after day of arctic cold and accumulating snow, the temperature rose to 50.  We are promised, however, that winter will return.

Carol is asleep on the couch, occasionally filling the air with a snorting kind of snore.  I don’t think it is indicative of a health issue, rather the product of sleeping on her back with her mouth half open.

Had lunch with my guys, three today, one usual attendee couldn’t make it, but my neighbor, back from the Mayo Clinic in Minnesota where his wife is receiving stem cell therapy, rejoined us.

Although Carol has been eating with good appetite the past week or so, today she was not interested in the wrap I brought back for her, nor did she have much enthusiasm for supper.  I will have to pay attention to her appetite.  I recall hearing that dementia can diminish interest in food.

I don’t have much energy so I, hope to pick this up tomorrow afternoon in the library.

Friday afternoon and unfortunately, the weather predictions for today were accurate.  Temperature in the teens, strong north winds, rain into snow leaving ice everywhere.  Arriving at the library, I see only one car.  It’s not a holiday, so school should be open.  It turns out school was closed because of ice, and the one car belongs to a library clerk who chose to come in anyway to get some of her work done.  As I sit here another employee comes in.

For the past couple of weeks it is as if there’s a god looking down at me, and deciding that I don’t have enough to do with being the caregiver for Carol.  After all she does sleep a lot during the day.

So this deity, I will call him George,  for no particular reason except that appellation usually pops into my head when I try to come up with a name.  I truly don’t understand my connection to it.  I believe I have only known one George my whole life, a fellow who was a colleague of mine on the college newspaper.  I recall he got himself a gig reviewing restaurants for a local paper.  He ate out often for free.

My imagined deity seems to have decided to give me things to do, dropping a turd into my life at regular intervals.  Not a big lump, mind you, but a small one, say the kind you might carelessly step on.

Small, yes, but still you have to take the time to scrape it off your shoe, a tedious and unpleasant chore.

I won’t bother with the details, just the topics.  On various days, I have had to deal with my email shutting down, my Amazon account being compromised, both of these more than once, and then on one day the postal mail presenting me with two insurance billing problems, each one filling up a day’s free time to deal with.

All of them like that squished turd on a shoe, not of great consequence, although the Amazon one with its possible credit card implications potentially rising to that level, but the others that while demanding to be confronted like the pungent residue on the shoe, fall into the category of ordinary life irritations.

And that, for me, and perversely, is their charm.  I mention them to Carol who seems not to process anything more than the fact that I am bothered by something that her mind no longer relates to.  I suppose I give voice to the issues for her attention out of long habit or perhaps an outdated sense of responsibility.  She was, after all, my life partner, and I can kind of pretend she is still.

And speaking about these annoyances provides a little bit of release.

More important, though, is the fact that these problems are useful distractions.  They give me something quite concrete to deal with.  Better still, they can be resolved, ultimately, after battling through phone menus, and individuals unable to help, until finally reaching the person with the competence and authority to do what is necessary to remove the problem.

And,  thus, metaphorically, my shoe is once again clean.

The sudden January thaw has given me another such problem, but one I will deal with after the winter.  The thaw released huge chunks of ice from our roof.  One of these landed on the corner of the railing of our deck, smashing the wood.

It happens that corner had been hit the same way last winter, and the newly damaged part is the replacement piece installed  last spring.

And who says George doesn’t have a sense of humor.  Or that he does not look ahead.

And, no, I will not try to explain why my imagined deity is male.

Carol, of course, is unaware of all this.  The dog does sense my irritation and decides her bed is calling.

I don’t think George has any plans for Carol.

That job has been taken by her disease, for which I did not have to invent a name.

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New Year’s Eve

A couple of days after Christmas, snowed in, unremitting boredom  only interrupted by the daily war against the drifts on the driveway, thank you persistent northerly winds, and the resumption of calls from telemarketers on behalf of insurance companies peddling add ons to Medicare coverage.  One such call came in today with a local number and just the beginning of our town’s name on the caller ID.  Thinking it might be some entity I actually had a connection to, I picked up the line only to be confronted with a woman clearly reading a pitch from a script, who would not, could not, stop long enough to answer a simple question as to the purpose of the call. I imagine some college student trying to earn a few bucks over semester break.  I could have been kinder, let her finish her pitch, but I had just come in from doing the driveway and could not yet feel my fingers, and so I hung up.

For variety, just received a call from the political party I support.

We seem to have reached a plateau.  From day to day, there is little change in Carol’s condition.  Her appetite, if anything seems stronger.  Her mood is occasionally combative but not more so than before, and perhaps a little less. She is taking her meds more readily.  Maybe it helps that I have taken to accompanying the dispensing of pills by counting in Spanish, German, or French—I can usually get up to six or seven in each—or by reciting the old rhyme that starts “One, two, buckle my shoe,” as I feed her the pill.

Because of this seeming stability, and encouraged by a couple of indications of a willingness to get onto her feet, I decided to try to maneuver her into the transport chair to eat with us while our daughter was here and we were joined by our nephew.  I thought I could lift her up while he stopped the chair from sliding on our slick wooden floor.

The first part sort of went okay.  I wrapped my arms around her and lifted her up, then lowered her onto the chair.  However, she was complaining mightily the whole time, in an absolute panic, and slid off the seat before we had a chance to secure her with the seat belt.

I will not try again.

If we get another physical therapist in after the new year when she is on Medicare so that insurance will not again be an issue, I’ll consider another attempt.

Apparently, although I know Carol’s disabilities are not reversible I cling to the possibility that there may be effective compensation strategies.

I have always been stubborn in pursuit of certain goals.

So be it in this case.

I will know that we did not go down without a fight.

In the library the Friday before New Year’s Eve on Sunday.  No other patrons, just a  staff member shelving books.  Caregiver relief aide will be with Carol for a little more than another hour, and I am back from town getting a small repair done on my glasses.  Besides my laptop I’ve brought in the manual for the Navigation and Multimedia systems of my new Camry, a substantial tome.  Apparently, these systems can do marvelous things, including responding to voice prompts. There’s a bit of a learning curve involved, but I don’t mind.

This morning Carol awoke sobbing, something about her mother.  The best I could make out was she was unhappy that she could not either go to, or see, her mother.  I considered reminding her that her mother was in the nursing home, but chose instead to just hold her hand until she quieted down, which she did after a short while.  I then said it was time for breakfast, and she seemed content with that.

This incident reminded me of episodes early in the onset of her disease, where she would awaken convinced that somebody had died.  I did not at that time understand that these events were a product of her dementia.  I knew something wasn’t right, but I could not put a name to whatever it was.

I now imagine they were some sort of hallucination.  She would say that the information came to her through the air waves.  My response, uninformed as it then was, was that had somebody died we would have heard through the more usual method of a telephone call.  The telephone hadn’t rung, hence nobody had died.

Needless to say, she was not always convinced of this logic although through repetition the response did gain some traction with her.  I do recall, however, one time when nothing would dislodge the fixed idea in her head that her cousin in Virginia had died, not only that he was now deceased, but he was so as the result of an accident while he was driving, I believe, a truck.

Perhaps now, I would just let that idea go, but then I tried to correct it,  going so far as calling the last number we had for him—we were not in especially close contact with this individual—and spoke with someone, I don’t recall who, from whom we learned that although he had moved he was above ground and quite well.

Over time, several other family members’ deaths occurred to her, and I would repeat the mantra, no phone call, nobody is dead, and that worked.

There have been no such incidents for quite some time, and I don’t think the one this morning was of that kind.  Quite what it was, I still do not understand.  I am aware that sometimes Carol will start laughing, as though someone has just told her a joke.  When I once asked who it was, she answered, it was herself.  She never was much of a joke teller, but I’d rather she be doing that than sobbing.

New Year’s Eve.  Carol asleep on the couch after a late dinner .  The dog asleep on the floor near the chair on which I am sitting.  I checked the tv for something to watch, including shows and movies I had recorded.  Nothing interested me.

We’ve had serious snow the past few days, probably a couple of feet although I haven’t heard an official determination.  I managed to get out to the store this morning as part of my Sunday routine, NY Times for me, a muffin for Carol.

It somehow seems fitting that the weather should add to my feelings of isolation this festive season.

I am somehow reminded of a New Year’s Eve some sixty or more years ago.  I do not know why this one sticks in my mind, nor why it intrudes into my consciousness tonight.

But it does, so I’ll take a look at it.

I was probably about twelve, maybe a little older.  We had moved from the two family house where we were the tenants on the second floor. The move was sudden.  A dispute with the landlord.  I don’t know now, nor did I know then, the particulars.  What I do know is that we moved in the middle of the school year when I was in the sixth grade.  Another upstairs apartment some twenty-eight blocks west on the very same Avenue I.

I am not sure if my sister was still living with us.  She got married when I was thirteen or fourteen.  In any case, she would not have been home on New Year’s Eve.

Nor my parents that year although I don’t recall their going out much on holidays.

Thus, I was home alone, too young to go out to my own party, or perhaps too new to the neighborhood if there were any celebrants of my age I could have joined.

I don’t remember what I did that night.  I am quite sure I did not watch television.  I don’t know what would have been on then in the middle to late fifties.

The only detail that, weirdly, is fixed in my memory is a calendar given out by the Chinese restaurant on Avenue J.  I can recall what it looked like.  Each page was a week, with several lines for each day where notes could be written.  It was probably about eight to ten inches high and maybe six or seven inches wide with a dark brown back.  The name of the restaurant was somewhere, either on the backing above the pages, or perhaps on each page.  I do not remember which.

It makes some sense that I would associate this calendar with New Year’s Eve.  It would have been brand spanking new for the new year.

But that is all I recall of that evening.

I try to recapture my mood.  Words like weird, detached, alienated, come to mind.  Not quite lonely although that would seem natural in a situation in which my own family was out somewhere celebrating.

Nor can I say that I felt angry.

Perhaps the best word is estranged.  In my own little non-celebratory bunker.

Which is exactly how I feel tonight.

I told Carol it was New Year’s Eve.  I am not sure that meant anything much to her.  She never had a head for time. I’m sure it was a struggle for her to keep to necessary school and work schedules.  But she surely did do that right through jobs, university and law school.

Without that imposed structure she had great difficulty.  She had to write things down, usually in a yearly planner.  When I went out for a bike ride, she would record the time I left.

It struck me as painfully inappropriate—best word I can come up with—that the other day we received in the mail quite a lovely, good-sized, faux leather bound planner from our financial advisers.

Just the kind of think Carol would have loved.

I have a calendar on my phone synced to my computer.

But Carol never moved comfortably into the digital world.  This planner would have suited her perhaps as recently as a year ago.

But not now.

Not now when one day blends into another for her, as do the weeks, and the months.

And the years.

So, perhaps I will awaken her at midnight.

Or maybe not.

Let her sleep. The new year is pretty much irrelevant.

To both of us.

Coda: Tuned to WQXR NYC streaming, which was offering New Year’s special of classical music’s greatest hits, and listened to the end of Beethoven’s 7th and all of his 9th.  The station let the music play right through midnight so that instead of watching the ball drop, my ear buds were filled with the glorious Ode to Joy.

Perfect.

Time is irrelevant listening to timeless music.

When the music ended, I succumbed, acknowledged the present moment, and nudged Carol awake and wished her a happy new year.

She smiled in recognition and went back to sleep.

 

 

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Holidays

Monday night.  Carol asleep on the sofa.  Dog in her bed.

Our daughter will be here Wednesday evening for a few days right before Christmas although she can’t stay for the holiday, having to drive back in time to return to her job.  I have tried to prepare her for what she will encounter, but there really is no way to do that.

Carol is oblivious to the holiday season, but she is sure that she has cancer.  I cannot disabuse her of this notion.

That is not surprising.  It is impossible to prove a negative.  Even if she were thoroughly tested now, another mammogram, colonoscopy, administer any and all cancer screening tests and have all of them come back negative.  That would not persuade someone who did not want to be persuaded.

So, the question is why does Carol want to believe she has cancer.

And I think I might have figured out an answer.

She must know on some level she is not right, by which I mean, not her former self.  Of course, that is abundantly clear to even the most casual observer.  But that fact perhaps has also made its way through her cognitive impairment.

She sees other people, primarily me and the caregiver relief aides, doing things she cannot any longer do. That much is a fact.  And maybe even in some inchoate form a memory stirs in her head that once upon a time she did the same things, stood up by herself, fed herself, walked about the house.

That is the beginning of my hypothesis as to why she is so insistent in believing that she has cancer.

The next step in my developing guess is that she is angry.

Very angry.

Not all the time.  Her mood is, in fact, generally,  accepting of her condition.

But underneath that placid surface there might be seething anger.  I’ve seen that anger erupt in profane expressions, usually when she is drowsing.  Sometimes when she is full asleep, she will start up and curse a presence her brain has manufactured.

So there is anger directed at a particular stimulus, one created by her mind.  But perhaps there is also a discontent to which she cannot put a name, but which nonetheless nags at her sense of well-being to the point that she must respond to it.

So cancer jumps to mind.  It is convenient.  She did have cancer.  And was never the same after the treatment that got rid of it.

I’ll go a step further.  It is possible that she sees the cause/effect that is so clear to me.  The cause of cancer, the effect of dementia.

At first glance, that causal relationship seems false.  Of course, the cancer did not cause her dementia.

But the chemo no doubt accelerated it to a significant degree.

Carol is not making such a nuanced distinction.

She was high functioning before the cancer.

She is barely functional now.

She is angry and needs a target.

Cancer it is.

Christmas eve and all is very, very quiet, Carol still up, the dog not yet in her bed, and I in my usual late night chair.  For some reason, I have found a station streaming unobtrusive classical music and I am listening with ear buds plugged into my laptop.  I have always been an avid listener of music, often when I am working on the computer.  I recall that when I was writing my dissertation decades ago, I had a radio on my desk tuned to WPAT, which played easy listening music.

This holiday season is happening as though on another planet. I did not send out cards, in itself not so unusual as many people have abandoned that practice, switching to social media instead.  We received a few cards, and I did bring up our miniature artificial tree with its string of blue lights.  That, of course, was for Carol’s benefit, as left to my own devices I would have left it in the basement.  It is a relic from another time, a reminder of when we would be immersed into Carol’s family’s celebration, everyone gathering in her parents’ house on Christmas day.  Carol shared her family’s enthusiasm for the holiday, and so when our daughter was young in New York, we would have a full sized tree, sometime real, sometimes artificial, and once we moved here I strung lights on this house.

Carol’s family no longer gathers, as each nuclear family now goes its own way, a kind of natural evolution, I suppose.

But they are all celebrating.

We are not.

I told Carol a little while ago that it is Christmas eve.  She did not offer much of a response.

Not surprising.

Our daughter is now half way back to Minnesota after a three day visit.  She will be completing her journey on Christmas day.

For Carol and me, tomorrow will unfold as does every other day.

Putting all this together produces an eerie feeling of being on an isolated island in the midst of an ocean of unrestrained exuberance.

It is not terrible, just strange.

I can’t decide how I feel about this.

I regret that Carol no longer can enjoy that celebratory holiday energy.  But I don’t really miss it.  I was never fully part of it anyway.

Still, the feeling of being isolated, of dealing with Carol’s dementia primarily by myself, is amplified by our detachment from the holiday festivities.

A week from now New Year’s Eve will replicate this experience, perhaps with even more emphasis.

It was lovely having our daughter here for her brief visit.  For those days, which included a dinner out with Carol’s brother, wife, and Carol’s sister, with the nephew staying with Carol, there was a whiff of normalcy.

Now that is gone, up the chimney down which will come no chubby little elf.

Late night after a fierce winter day, lots of snow, wind chills below zero, white outs  that obscure the roads.  I cleared the driveway to provide room for Tuesday’s aide, but then watched the snow continue.  Luckily, neighbor Rocco came by with his rider snow blower and a few more passes with that machine got the driveway clear again.  Took my time going to town for groceries.

Yesterday’s Christmas day was absolutely quiet. The phone did not ring once, and that simply does not happen during this time of constant barrage of telemarketers and robo callers pitching Medicare Advantage plans.

I wished Carol a merry Christmas.  She kind of smiled, but I am not sure what to make of the response.  I’ve pointed out our little fake Christmas tree, and told her which cards had come.  In that regard, she responds to the names, it seems, much more fully than the holiday itself.  Today, a card came from Etta, one of her very old friends from the time she was working in New York.  Etta’s name registered strongly, and elicited a clear and loud repetition.  I seem to remember that I took dictation from Carol for a letter to Etta some time ago when Carol’s head was still good but her handwriting had failed her.

Another card came from Jeff, my office mate for my last years teaching.  Carol also responded to his name, but actually more to my recalling that Jeff’s wife Sue is a judge.  From time to time, Carol still reminds me that she is a lawyer.

After that long quiet Christmas day I was in a funny mood, one that is hard to describe.  I wasn’t down, nor was I up.  But I surely lacked any ambition or inspiration to do anything, which is unusual for me.  From ten o’clock on, most evenings, my energy revs up, and I find something to do, write, read, watch the news or a sport event if one of my teams happens to be on.

But not last night.  I sat in the tv room looking for something to watch. It was way too early for me to consider sleep.  Carol called me in as she sometimes does after she has gone to sleep herself.  This time, she appeared to be upset about something, but she could not tell me what.

I sat with her, holding her hands for a good while until she settled back to sleep. Occasions like that encourage me to continue with our present arrangements.

I still was neither sleepy nor motivated to do anything.

I opted for mindless entertainment and watched the latest Jason Bourne movie.

It was peculiarly satisfying to let Hollywood take hold of my mind and chase everything else away.

A fitting end to our non-celebratory holiday, the sensory overload emanating from the tv screen, the obliterating white from the snow storm outside, both in their very different ways providing analgesic relief, a couple of hours during which I thought about nothing.

These days nothing is sometimes better than the somethings I have to think about.

 

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Of Whiteness and Annihilation

Wind howling outside confirming winter weather advisory of snow starting tonight and continuing all day tomorrow with predicted accumulation perhaps a foot or more.  That will most definitely complicate my schedule this week.

We’ll see.  Such dire predictions have been wrong before.  The wind rattling the window behind me, however, says not this time.

It’s been five days since Carol’s seizure, and there is no sign of a recurrence.  If anything, her appetite seems better, not that appetite has anything to do with the seizure.  The point is she seems very much like she was before.  Even now, as our old mantle clock struck eleven o’clock, she yelled at it to shut up.  Which is what she generally does.

I was about to say she was back to normal, but had to correct myself because that word has lost any semblance of its usual meaning.  What exactly does normal mean when applied to someone with dementia?

I’m sure I don’t know.

What I can say is that her behavior, whatever word is used to describe it, does follow certain patterns and remains within the parameters thereby created.  In that respect, she is back where she was before the seizure.

But this little exploration of semantics, so natural to me, raises difficult questions.  If I can’t define normalcy in the context of dementia, I also recognize that I try very hard to convince myself that a measure of the ordinary understanding of that word persists.

I am not exactly lying to myself.  I know that much of what I do as caregiver, starting with hand-feeding her breakfast to settling her down on the couch for sleep, and everything in between, is anything but normal.

Still, I hang on to the slivers of behavior that enable me to, for a moment or two, buy the fiction that things are normal.  From time to time, we do have snippets of conversation.  Tonight she asked me who Ed was.  I replied that maybe she was thinking of her father’s friend of that name. Yes, she said.

Did she actually remember Mr. Ed Brown who has been, I believe, gone for some time?

Perhaps.

When I told her about the snow storm on its way, she nodded, a non-verbal affirmation that she knows all about the winters here.

Over the course of any day, there are not many of these moments.  They tend to be overshadowed, or overwhelmed, by utterances and occasional behaviors formed by her dementia.

But when they do come, they are both precious and dangerous.

Precious because they lift my spirits, push off for a while the black cloud that hovers over us.

But dangerous precisely because that cloud is the new normal, however we want to define that term,

Once again in my chair across from Carol just falling asleep on the couch.  For some reason she was in a combative mood, perhaps because she had been bathed by the aide and she does not like being so handled.

The major snow storm did not materialize, and the winds have died down.  Winter is settling in.

Tonight is the first night of Hanukkah.  In years past, Carol would watch while I read the prayers and lit the menorah. She always encouraged me to maintain my hold on my Judaism.  She bought me a three volume history of Jews in New York, and was happy to help prepare a Passover meal that we hosted for our close friends.

But this year there seemed no point to pull out the menorah and order the necessary candles online.  For whom would I be doing this?  The dog?  Myself?  The solitary nature of the activity just didn’t make any sense to me.

 

Doctor just arrived to check Carol. I continue to be thankful for this new practice that offers home visits.  Carol checks out fine physically, heart, bowels, blood pressure, pulse, all vitals good. 

A medical professional confirms that Carol’s physical self remains unchanged.  Her mind, however, has not, and perhaps will not, find its stasis.

I attend to the former as best I can.

The only thing sure about the latter is that with slight up and down variations its own pronounced movement will be down.

Saturday night, an unusual writing time for me.  But it is has been a very quiet day, no more than a half dozen words exchanged with another person, in this case the woman window clerk at the local post office.  The quiet amplified by the unremitting white landscape.  In “Desert Places”  Robert Frost describes walking past a field being covered in snow, suggesting that the whiteness invites an apprehension of annihilation.  One doesn’t have to be literary to be somehow distraught gazing out of the window at a white blanket that covers all that is familiar with a blank stare coming back at you.

And so my antidote to such a feeling is to fill a white page on my laptop’s screen with black words.

These weekends as I have no doubt said before are difficult.  I cling to Carol’s presence as non-verbal as it is for the most part.  Oh, we squeeze out a few words back and forth that leave the impression of a conversation, but I know I am fooling myself.

Deliberately.

Which I do regularly, leading to my decision today that I would try to begin a program that would lead to Carol regaining her ability to stand.

And then to walk.

I would ever so gently have her take my hands, and permit me to help her sit up straight.   Our very comfortable and yielding sofa encourages you to sink back into it.  It does take a little effort to push yourself into an upright position from which you can then get up onto your feet.

Of course, it did not work.  At first, she seemed willing.  But when I held out my hands, her fear won out and she just settled back into her usual half reclining position.

I will try another day.

I do not want to give up just yet.

Perhaps I am motivated at this time by my shiny new leased Camry in our garage, the possession of which reinforces the idea that in some ways life can move on in a positive direction. Carol loved cars and took exquisite care of her Subaru.  I know she will never sit in that new car, never enjoy with me its comfort and power.  That is beyond reasonable expectation.  But if she were to get back on her feet, perhaps she would be able to get to a window where she could see it.  That would be something.

Or maybe I am thinking of our daughter’s visit next week, and would like her to be able to see her mother standing up.

These are, in some ways, ridiculous motivations.  But they are also quite real.

I know this disease is irreversible.

And yet I try.

A couple of days ago, I brought up from the basement the miniature Christmas tree we have had for years and years.  It has a string of blue lights on it, some beads wrapped around it, and a handful of ornaments, including one that has our daughter’s name on it, dated 1998.  I plugged it in and got Carol looking in that right direction.

I convinced myself that she saw it and acknowledged its presence.

Maybe she actually did.

Looking back over what I have just written, a thought strikes me.

The white I began with is Carol’s disease, covering, what she was, no covering is not a strong enough word, better to say obliterating, day by day who she was.  But even under this blanket of snow, as the stubble in Frost’s poem still pokes through the white, are the shapes being covered, so the snow mimics those forms, there a rise indicating a chair on the deck, there a bulge where the watering can I left still sits.

It is those shapes and forms no longer the things themselves that are like the traces of Carol still pushing through the obscuring, the suffocating, white of her disease.

 

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No Fig Leaf

A snowy afternoon.  Doesn’t look like serious accumulation yet.  Glad I installed a new spark plug in the snow blower, which responded by starting up in a test run. 

Carol sleeping in a half sitting up position with a weighted vest on her chest, as per the instructions of the physical therapist, who along with the occupational therapist, will be here shortly to continue their efforts to get Carol comfortable standing up.  The vest places weight on the shoulders.  The theory is that the pressure will increase the message sent by the neurons in the shoulder to the brain, thus increasing the brain’s awareness of the body’s position.  This strategy was, in fact, suggested by Carol’s first occupational therapist.  At that time, Carol was still mobile, and we never took up the idea.  I can only hope that this neuron stimulation will be strong enough to lessen Carol’s fear of falling enough to permit her to stand, and perhaps even walk.

Therapists have arrived.

It is Friday night, two days later, and my mood darkens as it does at the beginning of every weekend when I know I will lack much human contact.  It is approaching midnight and I just finished tomorrow’s Times crossword puzzle, perhaps delaying what I think I will be writing about, today’s startling juxtaposition of the ordinary and the extraordinary.  The ordinary included the second day of having to snow blow the driveway.  The extraordinary is dealing with what happened two days ago when Carol had a seizure.

The physical and occupational therapists were pushing Carol hard, as they had done in the past.  But this time, things did not go well.  As in their one fairly successful session a couple of weeks ago before an insurance issue interrupted their efforts, they managed to get Carol on her feet, into the transport chair, and on her feet again in the bathroom where they encouraged her to look at her own face in the mirror.

So far so good.   I was in the living room, keeping my distance as I usually do so they can work without my looking over their shoulders.  I heard what was going on.  Carol was being congratulated for standing so well.

But then, she wasn’t.  They were going to change her nightgown.  She seems to have become uncomfortable and resisted.  Her voice rose.  They decided to just get her back into the chair and wheel her to the couch.

They stopped next to the couch.  Carol was sitting in the chair with her head drooped.  Drool dripped from her mouth and some other liquid from her nose.  She did not respond when spoken to.  I watched as they lifted her up and placed her on the couch.

After some minutes she seemed to come out of whatever it was.  I called the practice and had the therapist describe the incident.  I got back on the phone and asked when someone could come out to check Carol.

That turned out to be the next evening.  In the interim Carol pretty much regained her normal state, having eaten her supper, gone to sleep, awakened, as usual, had her breakfast and so forth.

The doctor who came listened to my description of what I had witnessed. He said he had not been briefed.  Perhaps he just wanted to hear what I could tell him.

I told him that although I had only seen epileptic fits in movies or on television, that is what it looked like to me.  He agreed in the sense that he said he was quite sure that she had had a seizure.

A seizure.  What exactly is that, I asked.

The brain resetting itself, he replied.

Not a stroke?

No, he said, a stroke would leave the person with weakness on one side or the other.

Why now, I asked.

She’s over 60, he replied, people over 60 are vulnerable to these kinds of seizures.

Connected to the dementia?

Can’t say.

Cause?

Possibly stress.

Now, two days later during which Carol is as she was before, I have both pushed the seizure aside so as to go on with the business of living while being perfectly aware I need to take it out, stretch it onto a table, and examine it.

Thus, the juxtaposition with which I started.

Ran out of steam last night, so I resume this Saturday afternoon with a heavy snow shower turning the air white.  I am not going anywhere today, and I don’t expect any visitors.  I will not clear the driveway until tomorrow.

I have been thinking about the quasi artificial deadline that has been shaping my thinking concerning my continuing to serve as Carol’s caregiver in our house. Her seizure, if that is what it was, makes that topic timely.

Months ago, I believe in late spring, I consulted with an elder attorney at a time when the realization hit me that I had better explore my situation in more depth.  I had a number of questions concerning such matters as an existing power of attorney document, but the big elephant in the room demanding attention be paid to it involved how I would afford the cost of placing Carol in a skilled nursing facility

My lifelong habit in dealing with such issues is to check out the lay of the land, see what my choices are and will be, and having done that, place the problem into mental storage, until such time as I would actually have to decide on a course of action.

That was my mind set when I consulted the attorney.  I was then nowhere near making the gut turning decision of placing Carol into a facility.  I had already put her name on a waiting list for the Pavilions, a highly recommended place in town that apparently has a year waiting list.  Doing that and gathering other relevant information was all I intended to do as a result of my consultation with the attorney.

We had gone over various matters, but focused on the money issue.  That turned out to provide additional support for my usual practice.  Specifically, it alerted me to a date in the future at which the financial picture would change dramatically.

That date corresponded to the point when Carol would go on Medicare.  Once on Medicare, she would become eligible for Medicaid support for a nursing facility, support sufficient to make that option affordable.  My financial advisor had joined me at this meeting, so the attorney had been fully briefed on my resources.  With that information ,  she offered an educated guess as to what my out of pocket costs might be, and they were such as to be affordable.

The attorney’s advice some six or so months ago was to not do anything—she said to hang in–until Medicaid support was available.

That, of course, suited me just fine.  It strengthened my resolve to keep Carol with me at home, if for no other reason than financial stability.  It kind of took the decision out of my hands.  Even if on certain days when freeing myself from my care giving responsibilities seemed attractive, I could always tell myself, just wait, don’t do anything precipitous.

I knew then that this reasoning was something of a diversion.  In the first place, I realized that if absolutely necessary I could absorb the cost of a facility for the months leading to Medicaid coverage.  The attorney had said she might be able to secure that coverage earlier, but it would be difficult.

In the second, and more important, way, it made the real issue secondary, when I knew, if I wanted to be honest with myself, that it was, and is, primary.

And that is whatever the money parameters, the real decision resides in my heart.  At what point, under what circumstances, or stress, or emotional exhaustion, will I be ready to leave behind the fiction of living with the Carol that was, and accept the reality that the Carol that is must be put into professional hands, and my doing that will in a very profound way change my life, knowing, as I do, that the change might be of minor concern to Carol herself.  Someone else would attend to her, as I do now, and she might not remember from time to time, who that person is, as she does not always seem to be aware of who I am.

That last, of course, is the hardest morsel to swallow, anticipating, perhaps, the possibility that when I would make my visits to her, she would not know who I was.

Until now, I did not realize just how devastating that would be, how difficult to accept the reality that from her perspective I no longer existed although her memory of me might linger indefinitely.

Carol is now within weeks of being Medicaid eligible.

I will have to confront my decision making without the cover of needing to wait.

That is, how it should be.  Such a decision should be make in all of its hideous nakedness.  No fig leaves. No diversions.

Just what it is in on its own unforgiving terms.

In that regard, the image of her sitting almost lifeless in that chair stays with me.  It is not so much the drool, or the mucous, if that is what it was, dripping from her nose.  No, it was the way her head drooped as though never again would she lift it up, that and the failure to respond to words, or a touch, a squeeze of her hand.

I suppose in my mind at that moment it was like touching a corpse.

A hideous exaggeration of the facts, to be sure, but since when do emotions pay much attention to facts?

I saw in her inert being the time when she would no longer be, when all traces of the Carol that was would be irretrievably gone.

And, in a sense, that is not so wild an overreaction.

For her dementia has already put her on that train, which might, any day, leave the station.

 

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