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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Here or There/Like Light From A Distant Star

Sunday night after another long, quiet, isolated and isolating weekend.  We are in that period between Thanksgiving and Christmas when the networks, aware that people’s attention is elsewhere, stop broadcasting new material.  So, no Masterpiece episodes tonight.  But there was an engaging fund raiser about the Everly Brothers on PBS, and a Carol Burnett retrospective on CBS.  I watched the first, recorded the second, and caught the end of Sunday night football.

Carol ate most of the steak dinner I prepared, but is restless now.  Some nights she slides into sleep, but tonight she seems to be fighting it.  I can’t imagine what is going on in her brain to cause the difference.

I find myself writing more about myself than about Carol.  I believe that is because she seems to have plateaued.  She is certainly no better, but neither is she worse over these last weeks.  We have a kind of routine that varies only in terms of the different caregiver relief people who come.  There are three now.  The one who has been coming the longest is just back from her own medical leave.  She gives Carol a good sponge bath and hair wash each week.  One of the others came for the first time this past week while the third has been here four or five times.  Each has her own personality and interacts with Carol in somewhat different ways.

I am not sure Carol is aware of these different people who come to stay with her.

Carol continues to talk to some person in her headThere seems to be a disagreement.

The physical and occupational therapists are back after the resolution of an insurance screw up that prevented their coming.  Again, as they had done before, they managed to get Carol on her feet, but only as the result of some serious effort from the two of them working together.  Carol is also on an anti vertigo medicine on the off chance that vertigo might be part of her problem.  I am not optimistic but see no reason not to try that approach.

I began by saying I find myself writing about myself, and that is so because I am thinking about myself more as Carol’s condition has stabilized for now.  I am aware that the stability will not last but I do not have any way of knowing its duration.  What it has done, though, is given me the opportunity to kind of catch my breath and begin to think, however, tentatively about my future without her, for that is the inevitable road I am on even though I cannot know its distance.

I suppose these thoughts have been prompted in part by a newspaper clipping one of my Tuesday lunch mates gave me  It was from the Sunday Times, which I go through each week, but he must have dug deeper to come up with this article, which described how the north fork of Long Island is becoming the preferred destination for some city dwellers seeking a quieter life style.  It’s an area that has some appeal for me.  Although its shore front is on Long Island Sound as opposed to the ocean beaches on the south fork, it still offers miles and miles of sand and water within easy distance.

It might well be out of my price range, but perhaps not.

That is not the immediate point.  We are not ready to get into those kinds of practical details.

What is the point is that I am comfortable enough where I am now.  Our house is on a peninsula, so I am always near water, which seems to be a kind of constant in my life.  And this primarily farming environment offers a welcome alternative to the suburban life style, which I endured more than enjoyed for most of my adult life.

But I do ask myself if I want to live here without Carol.  Or our daughter, who in all probability will wind up somewhere else as she thinks about a career move that will take her out of Minnesota.  She never set down roots here.

Nor have I, put down roots here, that is.  The physical environment is one thing.  The culture is another.  There is nothing wrong with Midwestern culture.

It’s just not mine.

I have always said, partly in jest, and partly quite seriously, that having lived here for sixteen years, longer, in fact, in this house than others I have inhabited in my life, still, I  am incompletely and imperfectly acculturated and that is as good as it is going to get.

Back east I have daughters, their families with grandchildren, and a number of very good friends and former colleagues.   I do not see myself blending any more fully into Carol’s family.  That’s not anybody’s fault.  We are just not that good a match. Having Carol here with me was all I needed to be comfortable. Without her, I just am not sure.

And when I think about my own inevitable decline, as I have begun to do, I sometimes see myself facing an existence absent any close human support.

And that is not an appealing prospect.

Carol appears to have fallen asleep.   I will close this writing session.  Clearly, there is more to think about this issue and will pick it up again when the time seems right.

A cold very blustery early December day.  Hardly any sun, constant howl of the wind, which has blown all remaining fallen leaves into the woods, leaving the browning grass exposed.  Altogether it is a day ripe for dark thoughts.

I have come to the startlingly obvious realization that at least for me it is harder to be alone in the winter than the summer.  When the weather outside is so inhospitable, from my point of view, the temptation is to burrow into the warmth both physical and emotional of one’s house.

Now with the storm doors reinstalled, and the gas burner recently checked and tuned up, my house is quite warm enough in the physical sense.

However, its emotional thermometer is dipping.  Carol’s body, in sleep, on the couch nudges that emotional temperature up a bit.  But as I dried from my daily shower, and noticed as I do every day, Carol’s towel hanging unused in its accustomed place next to mine, I experience a strong pang of loneliness, reminding me yet again that only I now use that bathroom.

The season is not the cause of  this-self-pitying mood; it is the amplifier.

And what it amplifies are the two realities within which I live.  One is the patterns and artifacts of all the pre-disease years with Carol.  The other is those same patterns and artifacts now forced into the present reality of the diminished Carol.

The link between the two is her physical presence.  In recent days I have come to understand how important that is for me.  It enables me to live a kind of lie, that the past reality of our lives together somehow continues into, and perhaps merges with, the present.

I call that a lie because intellectually I know it is false.  Whatever we are experiencing now is its own new reality leading us toward a looming future of immeasurable difficulty.  To forestall that future’s arrival is reason to subscribe to the lie.

It’s a maddeningly ambiguous place to be.  I take her hand and squeeze.  She tightens her grip as well.  What exactly does that mean?  Is it just an automatic muscle to muscle response, having nothing to do with her brain?  In other words is it just a response to stimulus, a neuron signal up to that portion of her brain that responds much as it does when you pull your hand away from something hot?  Or on a level up, does it trigger a memory based response, recalling the thousands of time her hand felt such pressure and responded to it?  And if it does do that, does her brain connect that memory to me as the party of the second part?  And even if it does so, which Steve is it responding to, the one actually holding her hand, or the one stored in her long-term memory?

About a week ago, there was a brief incident that shines a bright light on what I am trying to describe.

“You look pretty good,” she had said.

A remark these days so totally unexpected.  It echoed, sort of, in my memory as something she might have said once upon a time.

But now?

Take the sentence apart.

First, the “you.”  Is that me now, or me in her memory?

That question is hugely important.  We will come back to it.

Then what follows, “look pretty good.”

There is no getting around the idea of physical attractiveness.

I had just come into the living room from the kitchen where I was starting to prepare supper.  I had heard her call my name.  Usually, when she does that, I find that she does not have a specific request or question or need.  I ask her, and she sometimes says she has forgotten, or looks perplexed as to why I am even there.

This time was different.  At least, her remark seems to suggest something else although what that might be, I have no idea.  I came into the room.  She looked at me, and said, “You look pretty good.”

Not in a surprised way as though it was unexpected that I might look good.  More of an appreciative way.

It is tempting to read too much into those four words.

Of course, I want to think that she is looking at me as her present-day husband. After all, those four words followed her calling my name.  What other conclusion can I draw?

Well, for starters, there may be no connection between her summons and her observation.

Perhaps it is just like the light reaching us from a distant but now dead star. The light is still bright, but the source is no longer there.

Because of that ambiguity, I am, in a strange kind of way, comforted by Carol’s quite noisy sleeping.  She lies on her back, often breathing through an open mouth, producing a cacophony of snores and snorts that demand to be heard.

And I am happy to hear them.

Because they announce that she is still here in our mutual present, whatever shape that has.

Sometimes she murmurs unintelligibly.  I imagine she is giving voice to her own struggle with these realities.

When those sounds stop, when she goes into a quiet sleep, that looming future presses itself into my consciousness with unrelenting force.

I wait for her to again call my name.

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Long View

Carol sleeping noisily on the sofa, this Thanksgiving night.  The day, predictably, was quiet, folks everywhere celebrating the holiday each their own way. In the early afternoon, the pastor of the Methodist church Carol sometimes attended, called up to say someone would be by to drop off two dinners for us.  This kind gesture was not at all unexpected.  There was more food than we could handle, given Carol’s diminished appetite, so later in the afternoon, I heated up one of the two dinners and will save the second for another time.

Otherwise, Carol, whose stomach has been acting up, drowsed on and off, and I watched a lot of football.

Our daughter Danielle is planning a visit next month around the holidays.  I have encouraged her to read this blog in preparation as she has not seen her mother in almost a year. She said that she has read parts of it.

But that is not enough.

Nothing, really, is enough.

I am concerned as to how she will handle the shock that awaits her.  It is possible that Carol will not recognize her, as extraordinary a statement as that is.  I have concluded that Carol’s siblings have stayed away because they find it difficult to see her like this.  That is, perhaps, a kinder way of looking at their seeming indifference, but maybe a more accurate one.  They, of course, grew up with her, knew her for the bright vital person she was, and saw her that way during the years since we moved here.

For Danielle, as her daughter, I can only imagine the emotions will run much deeper and stronger.  Mother and daughter were very close through all the growing up years.  Danielle has Asperger’s and Carol, long before the diagnosis, sensed that there was a problem and was protective.  In spite of the autism, Danielle has managed quite well, got her bachelors degree, found employment, lived in Cleveland for her first job, and is now working in Minnesota and completing an associates degree in programming.

As she reached college age and now through her years of employment, she and I have grown closer, and her relationship with Carol is not as tight as it had been.  But still, there is a lot of history between them.  I think of their shared love of cats.  Danielle has always had one or more cats in her apartments.  They both enjoyed the Cat Who books.

Carol brought her up to be a strong woman, and that, I am sure, has enabled Danielle to overcome the obstacles posed by her autism.

She will need that strength as she confronts her mother’s  diminished capacity.

She and I were texting this evening while she was still at work, talking about driving versus flying to get here, and that led to conversation about cars, and what I was thinking of doing when my current lease expires in a couple of months.

After we were through exchanging messages, I was looking at the app on my phone.  I saw that it offered a link to pictures, those I had sent her, and those she had sent me.  I looked through these images.  Among them were a couple of pictures of our rescue Golden Retriever, and from her end some scenes of cloud formations that intrigued her.  She shares her mother’s keen visual sense and love of photography.  Other images sometimes served a practical purpose, such as one I sent showing her what baseboard heating looks like so she could tell me if that is what was in her apartment so I could guess at the source of her heating problem.

But most striking and heart wrenching for me was a pair of images from August of 2016. One of them is of Carol sitting at our kitchen table, with a little smile on her face, and waving.  I couldn’t remember the context for this one until I saw its companion sent from Danielle, showing her sitting at her work station and also waving.  I remember now that these photos arose out of a phone call as a kind of still picture version of Skype.

What struck me is that Carol is sitting up at the table, something she no longer can do.  I believe, if I look closely at the picture, she is sitting in the transport chair.  I must have wheeled her in that to the table.

Now, I cannot without great difficult get her into that chair.

The picture was shot sixteen months ago.

Checking my calendar, I see that those pictures were taken just a few days after we returned from our visit to Minnesota, a trip of about six hundred miles each way, involving stops in motels.

I cannot get Carol out of the living room, much less into the car.

Danielle saw her mother here last January, when we were still able to go out to eat.

We will not be able to do that this time.

Thinking about all this is so painful.  Living with Carol from day to day, I don’t often take the longer view that I just did.

It’s like picking off a scab to see that the skin below is still raw.

Another almost winter day, no sun, a little snow, altogether depressing weather compounded by it being Saturday when it seems I am on my own little island while the rest of the world goes about its business.  Tried to get worked up about Michigan playing Ohio State, but with limited success.  I’ve never been that interested in college sports, coming from an area thoroughly dominated by the professional versions.

It is late afternoon.  Carol is dozing and I will start thinking about supper soon.

I have attended funerals of friends or colleagues, and a few relatives of the in-law variety, but I have never experienced, close up, the death of a loved one, with one minor exception.  The exception was my maternal grandmother, who lived with us for a time before going into a nursing home where she died.

In all honesty, even though she was a close blood relative, I can’t say she fits the categorization of a loved one.  It’s not that I was not sad when she died.  I simply did not have that much of a relationship with her.  From the Ukraine, she spoke little English.  Or it may be she was just a quiet person.  Anyway, I can only recall one thing she would say from time to time, and that is “Hay is for horses,” probably prompted by hearing somebody say, “Hey…”  I remember a few things about her, primarily the sour cream cookies she formed with an overturned glass and baked when she lived with us.  I may be fabricating a memory when I think I recall playing Casino with her.  Before she moved in with us, we would sometimes visit her in Brownsville in Brooklyn, where she lived alone in what I now understand to be straightened circumstances, but that being said, she never seemed unhappy or troubled.

Just not the sort of grandmother with whom a teenager, which is what I was when she briefly lived with us, would have formed a deep emotional bond.

My line of thought here is identifying individuals with whom I had a close, ongoing relationship when they died.  I guess by close I mean both emotional depth  and physical proximity.  My best friend, best man at my wedding to Carol, fits that category.  A troubled, hugely talented individual, he lived with us for a while when his emotional life had become a train wreck and he was sleeping in his college office before we invited him to stay with us. He accepted but insisted on paying rent.

He got himself together, remarried, separated, and was setting up his own apartment when  I got a call from his daughter asking if I knew where he was.  I didn’t. A little later that day another phone call told me that he had been found dead of a heart attack.

He was an Okie, and I was from Brooklyn but we became brothers.

He died twenty or so years ago, but I can still hear the concern in his daughter’s voice when she called that day.

My nuclear family members—mother, father, sister—all died in Florida while I was living in New York.  I did not witness their final months, weeks, or days.  In the cases of my mother and sister, their deaths were sudden.  My mother had heart issues and her death, when it occurred, was not unexpected.  My sister died from a freak occurrence.  Not long after she died, my father was thought fit enough for coronary surgery at age eighty-six, but crushed by his daughter’s death, he never really recovered from the operation. I flew down the day of the operation, but thereafter  I spoke to him from time to time on the phone but did not see him again.

All of this is the context of what I am thinking about these dark, late fall days. I am less prepared for what I am living through with Carol than otherwise I might have been.  I imagine that after the death of people very close, one encounters daily reminders of who they were, most especially, as with a spouse with whom you shared living space.  I recall, for example, visiting Carol’s uncle in the house he shared for so many years with his wife.  Recalling those visits now, there were only a few objects that seemed to have been hers.  Perhaps he had, over time, removed others, or maybe there simply were not that many clearly associated with her.

In any event, he seemed to have recovered from his grief and mourning.  He could talk easily about his wife, although he did not do that very much.

I know that the sense of loss I experienced at the deaths of my parents and sister was somewhat less intense because they had not been intimately involved in my life for decades.  My observation of Carol’s uncle dealing with the death of the woman he had spent his whole long adult life with suggests that after a certain period of time, the sharp edge of pain  fades, or transforms into something more tolerable.  And one somehow turns the page.

If you’re waiting for the point of all this to my situation, here it is.

Just this morning, I was doing something absolutely insignificant: putting breakfast plates into the dishwasher.  As I stood there with the door of the dishwasher opened it occurred to me with disproportionate force to the trivial nature of what I was doing, that we had bought that dishwasher not that long ago, and that Carol very much wanted one with a polished steel surface.

How long, I wondered, would I be struck by these moments when I remember where or when something or other came into our lives.  Not mine.  But ours.

And does the fact that Carol is breathing heavily across the room from me now change those experiences for me?

She is not gone.

And yet she is going.

 

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Changing

Just back from a trip to my desktop in my office upstairs to work on Quicken, which is not on my laptop.  Coming back down to my usual night time chair across from Carol on the couch, I notice that the dog stayed in her bed instead of following me wherever I go as she usually does.  She seems to have decided it’s not worth the energy to go upstairs with me.

A difficult day with Carol  because she was not in the here and now for much of the time.  Instead,  she appeared to be fixed on whatever auditory hallucinations were occupying her brain.  There are two results from times such as these.  The first is they are distracting; the second is they augur a substantive change.

As for the first result, it is in a minor way irritating.  It’s as though there’s an animated conversation occurring that on the level of noise is distracting when I am trying to read, do my puzzles, or work on the laptop.  I grew up in an environment that conditioned me to ignore distracting noise. I rode the New York subways  doing my assigned reading oblivious to the crowds shuffling on and off through opening and closing doors, or the screech of steel wheels on steel tracks, or the garbled voice coming through the speaker announcing the upcoming stations.

I think I have lost some of that hard shell.

Sometimes in her internal conversations,  Carol actually screams.  At other times, she yells out “OW!” as if suddenly in pain.  If I ask what is hurting her, the best I get is some vague gesture.

In any case, her expressions of pain, or need, or anger demand my attention and take me away from whatever else I am doing.  For the most part, that is of no consequence, but occasionally I might be on the phone dealing with some issue, such as possible credit card fraud, or quite often an insurance billing problem, that I must attend to.

The second result of this kind of behavior disconnected from the present moment is more troubling because it leads to a more important shift.  On the immediate level, as much as I know in a rational way that she is arguing with, sometimes cursing out, an unknown person in her head, I respond as though the words were directed at me.  That is a perfectly plausible consequence.  We have been living together for thirty-five years.  I naturally respond to her voice as though she is saying something to me.  Worse, sometimes, in a sense, she is talking to me because she is addressing the Steve in her head, and uses his name, so reasonably I hear that and accept, for the moment, that she is actually conversing with, or as the case might be, yelling at me.

Today, there was a great deal of that kind of activity.

And it led me to a sudden unexpected, and unwanted, revelation.

I am changing.

I have been tracking the changes in Carol, as though I have remained as I had been.

But it occurred to me today with considerable force that my attitude toward our situation also moves along its own track.  And that track will take me away from my attachment to the then and move me toward the now and past that to some sort of future.

This hit home this afternoon when I was down in the basement to bring up the storm doors to insert them in place of the screen doors.  While in the furnace room where these doors are stored my eyes caught a faux leather, open box that contained a few CDs and framed pictures.  I’m always looking for music so I first paid attention to the CDs.  They didn’t interest me much.  I didn’t recognize the artists or the music.  But then I examined the photos.  They were from our daughter’s early years.  There was my beautiful, and most important, glowingly happy Carol.

That image pierced my let’s get this job done mood.  That Carol is so not here, not even remotely. Physically she has not changed that much.  In fact, her age has treated her gently.

But the woman whose smile glowed on the beach with our young daughter is no more.

And that intense feeling of loss, I realized, is moving me, however reluctantly, away from my grip on the used to be.

I am not happy about it.  But it is probably a necessary separation.

Back from an appointment in town and in the library again.  A little buzz of noise from a few kids, plus the librarians going about their chores.  I have about forty-five minutes before I have to be back home to relieve the caregiver relief person.

I am reminded that Carol enjoyed coming to this library to do her writing in spite of the fact that we had set up several writing stations for her at home.  Chief among these was the converted outer building, which was a one-horse stable for the previous owner, transformed into a rather nice, fully equipped office, complete with combination A/C and reverse cycle heating, and new furniture.  In our house, before our daughter moved out, we had a desk for Carol in a couple of different locations.  After our daughter left for college and then employment, we turned her bedroom into a full room office for Carol.

But still she often chose to pack her laptop into her attaché case and drive the six or seven miles to the library.  I believe she was seeking company.  That is a bit of a contradiction, but one that makes sense.  She was easily distracted, thus the appeal of the isolated outer building where there would only be a little occasional noise from the road or tractors across the way in the orchards.  On the other hand, however, she loved being among people.  In some ways, the library offered, I suppose, a workable compromise: mostly quiet but people there for as much interaction as she wanted.

I now have a fuller understanding of that compromise.  I am not nearly as distractible as she, nor do I crave company as she did.  For most of my life, where I worked made little difference.   When able, such as in my own house, I generally would have music playing although after a while when deep into my writing I would no longer hear it.  Even now as I get into this piece the background noise from the kids in the library doesn’t really intrude into my consciousness.

But there is a huge difference in how I think about my work station now.  I live so much alone, even when Carol is fifteen feet away from me.  I thought about that fact as I drove into town.  I always, now, drive alone.  Maybe I should start taking the dog for company, as I see many single drivers do.  In anticipating a long road trip to New York in March, I realize I have not done one of those by myself in many years.  I love to drive, and I will have my music, but nobody to talk to.

Before I left for town today, I found myself talking to the caregiver relief person about personal matters having little direct connection to her responsibilities with Carol.  I mentioned that I would stop at the library on the way back , this to inform her that I would not be coming back much before my time was up.  But then I explained that while at the library, besides doing some writing, I was going to start researching possible choices for my next lease car, which I will have to choose in a couple of months.

I was happy to have a little conversation even with a woman who is little more than a stranger, the kind of conversation I would routinely have had with Carol.  In fact she was the reason I began leasing cars when she was unhappy with the ‘95 Bonneville I was driving, then about twelve years old and beginning to show some signs of age-related problems.

At that time, each of us had our own car.  That had been true in New York.  We bought a all-wheel drive Subaru Forrester to be Carol’s car when we moved to the snows of northern Michigan, and after a while here we replaced the Bonneville with a leased Nissan Altima.

I know the registrations for each car were in the name of the primary driver.   Registrations renew according to the birthday of the registrant, and so the Subaru came up for renewal on Carol’s birthday, the Nissan on mine.

The titles were in both our names. When we sold Carol’s Subaru to our niece because it had become clear that Carol would not be driving any more, I signed for her.  Carol’s name is still on the Nissan title.

If Carol were now aware of these kinds of matters, she no doubt would want her name on the new lease car or added to the title should I decide to buy the present one.  She did not give up driving easily.   She would surrender her ownership in some form of a vehicle even more reluctantly.

I have to do that for her.

And I record these thoughts in the same library where a time ago she chose to come to work, and where I now appreciate the incidental social interaction offered to me here.  I could write at home in my office, but I feel that would be a waste of my respite time, on the one hand, and I have a felt need to be out and among people on the other.

Like Carol did.

In a perverse and ironic sense, in some ways such as this, I now understand Carol better than  before.

I could thank her disease for that gift.

But I think I will pass.

 

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Betwixt Then and Now/ Within Sight of Land

Spent the morning dealing with issues related to the historical society web site for which I used to be the webmaster, hugely assisted in that capacity by our daughter Danielle.  The society, as an act of mercy, has taken that responsibility away from me, and in so doing contracted with a new web hosting service.  That, in turn, involves removing me from the domain name, and doing that runs into password issues, all of which we managed to straighten out.

It always feels good to problem solve, especially now when the problem has nothing to do with Carol.  However, soon after that issue was taken care of I confronted another insurance issue, this one involving payment for physical and occupational therapy.  An hour’s work with the physical therapist who used to work as a case manager in insurance and can talk insurancese seems to have solved that problem.

The physical therapist is the only one of the professionals I have been dealing with who seems wholeheartedly to agree with my decision, thus far, to keep Carol at home with me.  Other views from family, friends, and professionals range from the I should think of myself school to those who don’t take a position but respect what I am doing to others whose focus is only on Carol and what can be done within the parameters of my decision.

In truth, there is no good answer.  That seems to be the rule in all matters related to the course of this disease.

My present situation offers substantial pluses and minuses.  On the plus side, and in keeping with the thread I have been developing in this blog, having Carol here with me offers a stasis between the then and now.  Except for largely now discarded items such as the walkers and travel chair scattered about the house, our living environment hasn’t changed much.  And, of course, her continued presence, especially when we sleep near each other, reinforces the continuity of the then into the now.

But I am sort of living alone since we do not really interact in meaningful ways as once we did.  I have lived alone at various times in my life, most particularly as a point of comparison, after my separation from my first wife.  But in that situation, I was free to live as I pleased, go where I list, while maintaining my professional obligations, going to work and socializing when and with whom I chose.

Now, though, my activities are circumscribed, conducted only at times when I have arranged for caregiver relief.  So, in a sense I am living alone while not living, strictly speaking, alone.  I serve Carol food but eat by myself.  For the evening meal, I make two place settings at the dining room table as if for both of us, but take Carol’s plate and silverware over to the couch where I help her eat her dinner.  Then I sit by myself at the dining room table with no-one to talk to.

Breakfast runs the same way although for some reason I have mine in the kitchen.  Maybe I do so to be near the Keurig and/or the dog’s dish.  And of course, I must retrieve the local paper without which it would be impossible for me  to eat my breakfast.

Lunch is a hit and miss affair for both of us, but in practice comes closest to accurately illustrating my immersion into the now.  Carol often is not hungry for lunch.  I sometimes skip it as well, or grab something quick like a cup of yogurt.  When Carol does express an interest, I bring her a protein bar or a sandwich.  Only very rarely do I eat lunch more or less at the same time.

These mealtimes scenarios exemplify what I am talking about.  Lunch is the most accurate representation of our now reality.  Breakfast and supper, on the other hand, hover betwixt and between then and now, beginning with the pretense of a shared meal, quickly dropped, and followed by the cold reality of now, as we take our sustenance separately.

[I’ve been looking for a place to insert the following, written some time ago.  Because I’ve been talking about meals, and the thoughts in the piece below were prompted by food shopping, here is as good a place as any to offer it.]

Traverse City and the peninsula north of it where we live have a large, perhaps disproportionate number, of permanent older residents.  Some are retirees who have come to enjoy the arts and culture the small city has to offer along with the beautiful landscape of water and hills.  Others are retirees of a different sort, the older generation of the farming community, who see no reason, as many of their peers in other places do, to move to Florida or Arizona or other warm weather havens.  Some of these do winter in those places while the hardier ones stay home and deal with the cold and the snow.

The point is that whenever I go out after the tourists have left the odds of seeing folks sixty years old and above are strikingly high.  In the grocery store today, I was walking behind a white-haired woman pushing her cart, accompanied by a middle-aged woman, who appeared to be her daughter, or at least a close relative.  Together, they were filling their cart while discussing the choices available on the shelves.  The older one could easily have been in her eighties.  She walked with care, but she walked.  And she was fully engaged in the shopping.

In the same store, I bumped in to an old friend of Carol’s, a woman with whom she had worked on various local history projects.  That woman was a descendant of one of the original farming families. Her intense interest in her own family, and by extension, local history led her to me when I was working on my historical novel set here and based on a sensational 1895 murder case.  She and Carol became fast friends.

She was there shopping with her husband.  We chatted a bit, and I filled them in on Carol’s condition.  We discovered we were all in our middle seventies.

The first woman was in her eighties.

All of us doing our weekly grocery shopping.

What’s wrong with this picture?

Carol is not yet sixty-five, and will never again join with me in this mundane chore.

And I feel profoundly cheated.

Cheated in a particular way that Stephen Crane wonderfully presented in his short story “The Open Boat.”

“When it occurs to a man that nature does not regard him as important . . . he at first wishes to throw bricks at the temple, and he hates deeply the fact that there are no bricks and no temples . . . . Thereafter he knows the pathos of his situation.”

Thus  Crane describes the thoughts of a man in a lifeboat, who contemplates the real possibility that he and the others with him in the boat, could well die, killed by the indifferent force of nature, the ocean on which like a tiny cork they bob within sight of land they cannot reach.

That is how I feel.  I want to strike out at something, but can find no target except the indifferent force of dementia.

Carol’s disease substitutes for Crane’s nature, both violently hostile, and yet indifferent,  seemingly unaware, of the damage they inflict.

This train of thought brings me  to another piece of Crane’s writing, one of his bitingly acerbic short poems:

A man said to the universe:
“Sir, I exist!”
“However,” replied the universe,
“The fact has not created in me
A sense of obligation.”

Yes Carol and I exist.

Bobbing on the indifferent waves  in our own little boat within sight of the unreachable and slowly receding land.

 

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A Train to Somewhere/Early Signs of Trouble Ahead

[Two posts here,as the first was rather short]

Just back from walking through a steady, light drizzle across the road to the mailbox where I found nothing much of interest besides the latest Smithsonian, one of the magazines we both enjoyed, I for the history, Carol for the science.

It seems as though the sun has only made token appearances for the past couple of weeks, just enough to remind us of its existence.  Otherwise, we are enduring gloomy, rainy weather, only brightened by the fall colors of the leaves that will before long be brown and on the ground. 

It is hard to be cheery on days such as these.

I feel like I am on a train heading toward an unknown destination and looking back to the station where I can see a figure, a woman, standing on the platform.  It is not clear whether her eyes are directed at the train and if so whether she will wave.  Or just turn away.

She stands, motionless.  Her arm does not come up.

That is Carol.

Or more precisely, that is how I feel.

Until now, for the most part, I have strained to hold on to her as though her disease was taking her away from me.  And, in truth, it is doing just that by loosening her grip on the now while moving more and more into the then of that part of her life still stored in her long-term memory.

But I am just now recognizing my own movement away.  It is not something I willed myself to do.  Quite the contrary.  Yet, just a little while ago, I saw an old film camera on the bookcase in our bedroom.  For some reason, as I picked it up sadness descended on me with an almost physical intensity.  My eyes moistened in response.

The person who used that camera to indulge her love of photography, a manifestation of her highly visual relationship to the world, that person rarely focuses her eyes on anything, and instead responds to the visions her brain manufactures for her from who knows what source, be it memory, or imagination, or some combination of both.

I imagine her disease has put her on that railroad station platform.

It is I who, inevitably, will have to move forward.

Somewhere.

Somehow.

I recognize that this down mood will not last.  I will not let it.  I never permit myself to wallow in self-pity for very long.  Writing is something of an antidote.  And then I recall that slight basis for hope prompted by what is probably the overly optimistic assessment of the therapists that they feel some progress has been made, and more is possible.

I permit myself to buy into that proposition.

If the train won’t reverse itself, perhaps I can get off.

Late Thursday evening after a hectic, social day, my weekly lunch, then dinner with brother and sister-in-law, between which a new caregiver relief person, who turned out fine.  The lunch crew now composed of two retired sociology professors, a retired social worker, and an engineer, besides myself.  Conversation some politics—we all lean left—along with local news and personal items.  Supper talk more family centric as it should be.

Had the occasion to go through Carol’s wallet looking for her insurance card.  Some sad reminders in the scraps of paper therein. On those, various notes and reminders written in her beautiful hand, of which she was so rightly proud, and which I wondered at, given my nearly unreadable scrawl.

Too tired last night to continue, so picking it up here.

I am finding as I work on this journal, and in so doing, look more closely at ordinary things that there were clues pointing toward where we are now, but they were seemingly not significant and easily explained away.

Among those papers in her wallet was one that listed the three steps necessary to unlock her mother’s front door.  It has a keyless lock.  To open it, you punch in three numbers in a certain order, and it opens.  The sequence is not that hard to remember, but Carol had written it down.

Innocent enough, perhaps, but it was only one such paper reminder in her wallet.  Another was a list of the telephone numbers of her family.  These are the kinds of numbers it would not be uncommon to have memorized.

Still, nothing that dramatic in these pieces of paper, just a bit of an indicator that she did not rely on her memory in these cases.  But then I found another piece of paper on which was written her own cell phone number.  That’s a little more unusual.

It also reminds me that she never really mastered her phone.

Or the microwave.

Or the computer beyond word processing and emailing.  Never did much on the Internet.

It is hard to explain these difficulties occurring in a woman who was quite at home with  machines, tractors and other farm equipment, cars, and such like.  And a woman who had the manual dexterity to play the piano and type at an impressive rate.

Perhaps her brain is just wired in a certain way, as all brains are.  I’m sure that is part of the answer.  But perhaps these difficulties can also be traced to the very incipient stages of what became her disease.

I see some memory issues in the notes to herself in her wallet.  Those same issues might also explain her replicating filing systems according to which she set up the same files in several different places.  Material relevant to our daughter is located in three or four different filing drawers.

Is that a memory issue?

I don’t know.

If it is, it did not prevent her from being a steady A student through her education career culminating in her law degree.

What I can say is that for the first sixty some odd years of her life whatever these issues were did not prevent her from functioning on a very high level.

Then she got breast cancer.

And chemotherapy.

Thereafter, her disease, which might have been barely discernible, made its presence known with force and effect.  In my mind, I have clear before chemo and after chemo pictures, and they are dramatically different.

I can only conclude, and various medical professionals have agreed, that the chemo accelerated the progress of the disease so that she might not have reached where she is now for another ten or more years.

Whenever I think about this, I have difficulty containing my anger.  The tumor was tiny.  It had not spread.  Only because advances in biochemistry made it possible for an analysis of the tumor to indicate that it was of an aggressive type pointed toward similarly aggressive treatment.  Had we known that the effect of the chemo might accelerate her dementia, we no doubt would have opted for its removal, no chemo, and a wait-and-see approach.

Her medical records must indicate that she had already been sent for neuropsychological testing, which showed minor impairment.  We knew this and thought it was something to be dealt with down the road.

We did not know, nor were we warned, that chemo might accelerate her speed down that road.

The oncologist just followed her usual protocol for such cases.

And there it was, and here we are.

 

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Hope

It’s either cool or cold today according to your frame of mind.  I won’t choose.  It is somewhere in between.  No sun and a steady drizzling rain that might develop into something more significant.  Reports of street flooding in town, but no danger of that here, sitting as we do atop a hill.

Another physical therapist will be here soon to do an evaluation to determine if she will undertake another round.  The goal will be more modest than in past therapeutic efforts.  This time we are looking to get Carol back on her feet, literally.  Resuming walking may be beyond the range of possible outcomes.

I am also aware that part of the need for an evaluation at this juncture is to project the benefits of the therapy so as to convince insurance to pay for it.

In any event, I am snatching a little writing time now, sitting across from Carol in our living room.  After being quite talkative—although I cannot say about what—she is about to start her afternoon drowse.

A realization has occurred to me.  As I write, I find myself expressing myself, on occasion, in a light-hearted manner that is most definitely at odds with our situation.  This should not surprise me.  I have always during life’s dark moments used a little humor to lift the gloom.  Doing so is not a conscious decision.  It is how I am wired.

If I try to analyze myself to explain myself to myself, I recall hearing somewhere a handwriting expert suggest how an individual’s basic personality can be revealed in the strokes of pen or pencil.  Even as I write that I wonder if this kind of expertise is becoming a quaint relic as more and more people only tap out their thoughts on a keyboard rather than inscribe them on paper.

Be that as it may, we still sign things like credit card receipts, and perhaps that will continue to provide a sufficient basis for what that long ago expert had to say.  What has remained in my memory was the assertion that if the handwriting literally had an upward tilt to it, it reflects a core optimism.  My handwriting, as miserable as it is, has such a tilt, most noticeable in how I cross the t in my name.  I do so with a longer line than is necessary, and with a strong upward tilt from left to right.  I even feel a bit of a rush of energy when I make that line, which I do after I have scrawled the other letters of my name.

So it would appear, if that expert’s ideas have any validity, that I have a solid core of optimism in my emotional makeup.

I feel that is correct.

I also know that optimism seems totally out of place in our current situation.  On the one hand, it is.  On the other, an irrational optimism stiffens my resistance to yielding to this awful disease.

It will defeat us.  I know that.  But not without one hell of a fight.

And on some level, I believe Carol shares that determination.

She does not want to give in.

Settled into my writing chair in the living room across from Carol sleeping on the sofa. Usually, she does not fall asleep as early or soundly as she has done tonight.  I think she was knocked out by the session with the physical and occupational therapists this morning.

I did my grocery shopping this afternoon, and needed a rest before making supper for us.  On shopping days it’s always frozen dinners.  Carol’s is lasagna and she eats it with a good appetite. For me, a hungry man dinner.

Dog is knocked out also, but that is normal.

Today Carol worked with her third physical therapist, as well as her third occupational therapist.

I thought we had moved beyond the reach of both kinds of therapy.  We had started with occupational therapy a couple of years ago shortly after Carol’s treatment for breast cancer was completed.    At that time, we were working on her restoring her handwriting, which had been a thing of pride and beauty.  But after chemo, she could not manage to write on a straight line, or start at the left margin.

In my ignorance then, I thought this problem could be, and would be, fixed.

Of course, the problem only got worse.  We moved on to the first physical therapist, who concentrated on exercises to strengthen her trunk.  When that therapist thought she had done what she could, she left us with a sheet showing how to do each of the exercises, along with a pedal device with which Carol was to continue strengthening her legs.

More or less at the same time, we worked with the second occupational therapist with the goal of restoring Carol’s skill on the keyboard.  She had been an excellent typist.

I thought, naively, that muscle memory would kick in and fingers would again find the keys as they used to.

Of course, that didn’t happen, any more than the piano lessons we signed up for restored her ability on that kind of keyboard.

When her mobility difficulties worsened, we worked with the second physical therapist, with the goal of getting her able to go up the stairs.

I’ve written about that failed effort.

I did not see much point in continuing to work with either variety of therapy.

But our nurse practitioner, observing Carol’s inability to get off the couch, and recognizing that she was more than strong enough so to do, suggested we try yet again.  I saw no reason to object, so the third physical therapist came last week, and asked if she could return with an occupational therapist to see if the two could combine their efforts.

That is what happened today.

With a degree of success.

They managed to get Carol on her feet, and then also into her travel chair for a little movement around the house.  These feats were accomplished in spite of Carol’s spirited, and occasionally profane, resistance.

As I witness their working with Carol, I felt a little stirring of hope.

Maybe, just maybe, in spite of the heavy weight of the downward movement of the disease, that movement could be stayed, and even to a small, but not insignificant degree, reversed.

A great success would be to get Carol back on her feet.  Perhaps even to walk a little.

Is that too much to hope for?

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Two Worlds

Another rainy fall day.  Turning colors on trees becoming more vibrant and worth a drive up the Peninsula to witness, but rain has dampened the leaf peepers’ enthusiasm today so I made an uneventful crossing to our mailbox, only to retrieve one thin piece of bulk mail, which I tossed into our waste bin on my way back into the house.  Carol was fidgeting and thinking she was falling because her legs were dangling off the sofa.  I repositioned her, and she is now  lapsing into her afternoon drowse.  I’ll take the opportunity to see what thoughts are looking for a way out of my mind..

My morning routine involves first seeing to Carol’s hygienic needs, then emptying the dishwasher, which I am trying to train myself to do the evening before, feeding and letting the dog out, and then preparing Carol’s breakfast, usually melon chunks or a banana, toast, a breakfast sausage, and her juice.  When she is settled down from all of that, including encouraging her to swallow her morning meds, I go upstairs to shower and dress for the day.

That trip upstairs always brings a wave of sadness, nothing intense because it is replicated daily, but strong enough to remind me of how different my life, or should I say, our lives, have become.  Entering our upstairs I cross the border into another country.  Even the dog, who nearly always positions herself in my vicinity, seems to recognize that I am leaving our common living space and contents herself with settling on the first landing if she ventures up the steps at all.  Only when I spend a decent interval in my office does the dog decide to figure out what has happened to me.

Granted all of that, our upstairs still forcibly reminds me of the then of our lives rather than the now.  In our bedroom are our two dressers, and our two clothing closets.  Because of the configuration of this room in our old farmhouse, there is not space for two night tables.  The one we have, an antique little cabinet we purchased from the  shop half way to town, sits between the bed and the doorway.   Before I installed our set of cordless instruments,  we only had one  plug into a jack phone upstairs located in my office in the adjacent room.   Since I was the usual phone answerer—probably because of my many years of having a phone on my work office desk—even before Carol’s deterioration, I positioned myself on the side of the bed nearest the doorway so when the phone rang,  I would roll out of bed and stumble into my office to answer it.  When we got the cordless phone, I put it on he nightstand next to my side of the bed.

For years it was thus, with Carol on the other side of the bed.  We both liked to read at night, so I used the night stand to hold whatever book I was working through.  Because there was no corresponding night stand on the other side of the bed, I put a short shelf over the headboard to hold Carol’s books.  However, at the beginning of her difficulties, she began to experience trouble navigating from that side of the bed, around it, and then out the doorway, across the hall, to the bathroom.

As a result, we switched sides.  I still answered the phone when necessary by reaching across her, but she piled her reading material on the night stand.  Still sitting there is an issue of Scientific American, which every day as I sit on the bed putting on my socks reminds me again of the scope and variety of her interests, frankly a good deal wider than mine, although mine perhaps run a little deeper.

When I exit the shower, I take from the rack my towel.  Her towel, now long unused, remains hanging on the rack.  When I reach into the storage space a previous owner fashioned into a closet by installing shelves and folding doors in front of them, I see that my items are housed only on the top shelf while hers occupy the others.  In the shower itself is the corner caddy on which standing upside down still is the bottle of her hair conditioner.

Its companion bottle containing the shampoo is now on a shelf in the downstairs bathroom near the couch in the living room.  She had always taken very good care of her luxuriously thick hair,  one of her most appealing features.  The combination shampoo/conditioner set was of especially good quality, which I would order online as necessary.

That the two bottles are now divided upstairs and down, the latter being administered occasionally by one aide, the former not at all, underscores the then and now that we are living through.

Two bottles, one in each of the worlds, past and present.

The constant tug back and forth, the past muscling itself into our present.

For now, I would not have it any other way.

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Fix-it

Just back from town for weekly grocery shopping.  At the butcher shop one of the clerks asked after Carol.  We always used to food shop together, and this person hadn’t realized that I had been coming by myself for some time.  When I explained why Carol was not, and would not be, accompanying me, she did what it seems everybody does in that situation: she referenced her grandmother whom she said, she had seen, but had not been seen by, for fifteen years.  Such a response, I suppose, is a way of sharing.  The first few times somebody so shared, it was mildly comforting, saying together we  belong to this group of suffering human beings.

 I confess, now, it has become a touch annoying.

I’ve heard that men often try to fix problems.   In relationship advice expositions of this tendency, men are encouraged to just listen to the woman’s account of what is troubling her.  I saw an amusing video to this effect posted online in which the woman is describing this discomfort she feels in her head.  When the camera shifts to the man’s perspective we see that the woman has a nail in her forehead.  The man tries to point out that fact.  She continues talking about the discomfort.  He listens, perplexed.  The title of the video is “It’s Not About the Nail.”

I am not interested in the relationship implications of this gender analysis.  And I have no idea whether it is, in fact, true that males feel compelled to fix things while females desire an empathetic listener.  Dealing with such hypotheses is well beyond my pay grade.  But what I can say without hesitation is that whatever the case might be for my male compatriots, I have that trait.

I want things to work as they are supposed to.   If they don’t, I become irritated.  And try to make them behave.  These attempts at fixing mechanical problems can be problematical, but usually not fatally so. I am persistent enough, intelligent enough, and wary of not doing anything stupid enough, to generally manage to fix things rather than do further damage.  That combination of limited natural talent and decent intelligence indicates why had I continued with my original college plan to become an engineer I would have been a mediocre one, forever swimming upstream.

Did not get much writing on this on my last session. Life intervened,  most significantly by introducing Carol’s stomach upset resulting in vomiting and diarrhea for the better part of an afternoon.

She’s better now,  and I have just made my way, with some difficulty back from our mailbox.  On this rural stretch of road, all the mailboxes are on one side to accommodate the carrier’s route.  Ours happens to be across the road.  That can be a bit of an issue in the winter, but there is no snow yet.  On the other hand, the leaf peepers are out in full force, driving up and down the Peninsula as the leaves, particularly the maples, begin to turn.  We are nowhere near full color, and yet I had to wait several minutes each way of my crossing, and even with the wait, I was obliged  to hustle.  I can see what’s coming from the south for a decent distance.  From the north, however, traffic comes roaring up and over the crest of a hill.  This road is a state highway with a 55 mile an hour speed limit.  A little inattention, as for example if I were to be looking at the envelopes in my hand as I head back to our house, and I would be road kill.

I will try to pick up the thread where I last left it before Carol’s illness.

My most recent fix-it project involved our fairly new dishwasher.  As with so many products, this otherwise sturdy appliance relies on little pieces of plastic in what can be important places.  In this instance, it has decorative plastic clip-on pieces at the end of the track through which the rollers of the top rack slide.  The job of these pieces is to stop the rack from riding off the track.  After a wash cycle one day I found this plastic piece from the left side track on the floor of the tub.

As many times as I popped that piece back on, it would not hold.  I observed how the one on the right was positioned, duplicated it for the one on the left, and maybe it would remain fixed for a couple of washes.  Then, thinking I had finally fixed the problem, I would slide the top rack out to put something at the back of it, only to have the rack continue past its end and dangle without support.

At first, I simply resolved that this matter, particularly in light of the other more pressing complexities of my life, was simply not worth my attention.  And yet, I could not tolerate the fact that this part of the machine was not operating as it should.  I recalled how a repair technician solved a similar problem on a previous machine, and I came up with an answer.

Problem & Fix

I fashioned a new stop for the track, using a four inch plastic cable tie, finding a way to thread it through openings on the end of the track so that it would now block the wheel where the plastic used to perform that function.

The repair has worked, and I feel a little surge of satisfaction every time I roll that top rack out.  The thing is again working as it should.

I find it difficult to leave problems alone.  I will persist and apply my limited mechanical aptitude until I find a solution, or failing that, eventually cry uncle and call in a professional.

I am facing such an annoyance now with my watch, which has a little window through which a number corresponding to the day of the month appears.  The mechanism that causes whatever this number is inscribed on to turn to the next date has somehow gotten out of whack.  I’m guessing that the mechanism has to be lined up in such a way as to ignore the sweep of the minute hand past noon, and then turn  some kind of wheel to expose the next number when the minute hand goes by twelve midnight.

However, it does not quite do that.  Rather, it either turns too early, so that the new number shows up after noon, or too late, so that the old number remains after midnight until noon the next day.  I have tried to fix this malfunction by using the adjusting stem that manually changes the number when it is pulled half way out so as to be able to work around all those months that have only thirty days.  But no matter when I make the adjustment, such as turning to the new number right after midnight, the problem returns, unchastened and bold.

Clearly, I can’t fix it.  Perhaps a watch expert can, but in spite of my irritation, this is just not worth the effort now.  So, I will live with the fact that as I look at my watch at this moment, it insists that it is the 22nd when I know full well it is the 21st.

Whether or not I am exhibiting a typical, or perhaps an exaggerated, version of the male fix-it mentality, I respond to most problems with an urge to set things right.  In my professional life as a college administrator, this trait was probably useful.  As a writer, and teacher of writing, it underscores my purposeful emphasis on rewriting.  And, as I have indicated, in my personal life, matters large and small induce the same response.

How then do I fix Carol?  How restore the wheels in her head so that they line up properly again, and mesh as they are supposed to?

There is no place to fasten a tie to stop her thoughts from sliding off the track.

I cannot make that repair any more than I can get my watch to function properly again.

To fix my watch I have the option to take it into town to a jeweler.

But there is no expert repair shop that will  restore Carol to her wonderfully working self.

That failure produces in me an emotion laced with anger, frustration, and above all, a constant and deepening sadness.

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