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.

Posted in Uncategorized | 4 Comments

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.


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.



Posted in Uncategorized | 2 Comments


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.


Posted in Uncategorized | 4 Comments

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?


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.


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.


Posted in Uncategorized | 2 Comments

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.


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.


Posted in Uncategorized | 4 Comments

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.

Posted in Uncategorized | 4 Comments

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.


Posted in Uncategorized | 5 Comments


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.


Posted in Uncategorized | 4 Comments

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.


Posted in Uncategorized | 3 Comments

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.



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.


Posted in Uncategorized | 4 Comments