Dementia, the Back Story

Monday night after a couple of days of warming that provided a respite from the polar vortex that drove temperatures to below zero with highs topping out in the single digits.  It was small comfort to know that a wide swath of the country was experiencing the same and worse.  In such circumstances, the old saw that misery loves company rings hollow.  Misery yes.  Loving the company.  Not so much. 

As if to somehow emphasize the point, the cold air hitting the back of my neck after breezing through the window air conditioner reminds me that the cold has returned.

I hear Carol restless in her sleep as she usually is.  Between me and her on the wood stove sit the flowers that the bad weather, whiteouts and icy roads, caused to be delivered a day late.

Not surprisingly, her birthday came and went with little notice.  The weather was so bad that not only were the flowers not delivered but Hanna did not come out for her weekly visit. 

However, Jane did stop by late in the afternoon when I was napping. I did not hear her if she rang the bell or called out.  She messaged me later to say she had left a card and gift for both of us on the bench in the entry way.  The gift turned out to be a package of mini brownies and the card featured a  historical photo of the Peninsula’s volunteer fire department in 1945. Each member in the picture was identified and I recognized some of the old family names.  Thoughtful gifts, both, and I regret I was not awake to receive them properly. Jane did say that the dog had done her best to welcom her.

I brought the flowers to Carol.  She seemed not to react to them.  I read Jane’s card, as I had the others that had arrived.  I detected some level of recognition.

It is clear that all of my preparation for her birthday, like so many things, such as insisting I get a muffin for her on Sunday, are much more for me than for her.

That is not surprising.

The noisy little electric heater just kicked on.  I have my ear buds on tuned to jazz from KNKX, Seattle.  The buzz from the heater almost drowns out the music.

I got a bit of good news and not so good news.  The good news came yesterday when I saw a notice that the new issue of Rosebud Magazine containing my Holocaust themed short story has just been published.  I am in good company with this fine little literary mag based in Wisconsin as this issue includes a conversation between Allen Ginsberg and William Burroughs  I have no idea how that conversation has surfaced so many years after the death of both of these counter culture icons.  I’ll have to find out when my contributor copies arrive. When they do I’ll order a few more copies to send out.

And I’ll announce this latest publication to the world. Whether the world will be duly impressed is another question.

But every publication reinforces my commitment to my writing career. In this instance, this publication encouraged me to send out two queries, one for each of my unpublished novels.

The not so good news came today in a telephone call from my dermatologist’s office to inform me that the growth removed from my scalp last Thursday was precancerous.  My doctor is sure she got all of it, and will have me back to take a look in six months, so clearly there is no urgency.

Still I would have preferred to have heard that the growth was innocuous.

It wasn’t, and naturally enough raises my concern not only for myself but for Carol.  In that regard I tell myself I’ve done all I can to prepare for the possibility of my predeceasing her. That is good, but not something I want to dwell on.

I think I’ll end on that note for tonight.

Saturday night, quite late. 

Thursday I went to town to at long last deliver to Munson Hospital the final wishes document I finished preparing a while ago.  I suspect I was delaying doing this task because on some deep level it required me to think about end of life matters.  Of course, I know I should do that planning, as unpleasant as it is, and  so I dutifully went through the forms, got the appropriate signatures for patient advocates, indicated what I want done with my dead body, and how I want to be comforted before breathing my last, all of which it is well to document now, but clearly pertains to a situation I have shoved into a closet in my mind to be taken out only when the urge to put the matter to rest motivates me to open the door to it.

I also have a couple of loose ends from setting up my trust that I need to intend to.  Nothing that consequential, but again I find little motivation to take care of them.  Which is not like me.  Generally, I do not like things hanging over my head that I know must be attended to.

It is likely that my present unanticipated situation is providing me with a somewhat different frame of reference for these kinds of decisions.  It will take some work to unravel that idea.

I can start that unraveling by setting out a an incident seemingly of much less significance than end of life planning. When I came home from my lunch yesterday, I intended to retrieve my mail before settling back into the house.  I pulled into the driveway, hit the button to open the garage door, eased the car in, got out and walked back onto the driveway my eye across the road toward the mailbox.

Which wasn’t there.

A snow plow had knocked it off.  The post stood naked.  When I got to it, several feet away in the snow I saw the box still attached to the cross piece that had been bolted to the post .

End of life planning on one day, and a mailbox problem the next.  I’ll take a look at each in turn.

If Carol were well, it is likely that I would not yet have filled out the papers I just delivered to Munson Hospital, let alone set up a trust. Perhaps at my age, my previous indifference to these matters was irresponsible. Carol and I did have wills, and I probably thought that was sufficient.

Maybe under those prevailing conditions wherein both of us were healthy a will would have been enough preparation. I remember that years ago we had investigated purchasing insurance that would pay for assisted living or nursing home care should either of us reach that stage. But the cost for such insurance, as I recall, was exorbitant at our then ages, so we dropped the idea, settling for each of us having a will. Other than that we assumed we would take care of each other.

I’m doing my best to hold up my end of that supposition.

It is, however, a more complicated story when I think about how I reacted to the mailbox being knocked off. Naturally, I was irritated. But more or less than I would have been before Carol fell ill?

It seems to me, I should be considerably less concerned about my mailbox on the day after I filed my last wishes, and walked into the house where I would take over Carol’s care from the relief aide. If I imagine one of those ancient scales, the kind with two shallow bowls suspended from a fixed arm that pivots to one side or the other depending upon which bowl has the greater weight, in such a scale the side containing my emotional attitude toward contemplating the end of my life would, I imagine, lean down much harder than the other side containing my irritation at having to repair a mailbox in the dead of winter when beneath the snow the ground was frozen solid making replacement impossible until the spring thaw.

While yet alive, I can avail myself of work-arounds to the mailbox issue if repair is not possible. Life would go on albeit, perhaps, with some inconvenience. However, I don’t recall any place on the forms I filed at Munson concerning the receipt of posthumous mail.

So why do the petty concerns bother me as much as they would if I weren’t acting as Carol’s caregiver, and in that context making sure she would be taken care of?

I think the answer is that part of me remains consistent with the man I was, and that man never reacted with equanimity to certain relatively minor assaults on his sense of how the world should be.

Such as there being in that world a mailbox remaining upright and available to receive mail.

That I still value that kind of mundane element in my environment, is as important to me as my admittedly much more important responsibilities. In fact, that retention of who I was enables me to be what I have to be now.

Late Sunday night.  More snow expected overnight and into tomorrow. 

About six inches greeted me this morning.  What didn’t greet me was the service I had contracted with to keep my driveway clear.  On Sunday mornings, I always drive down to the market to pick up a muffin for Carol and the NY Times, if it has reached the store.  So, I was not happy.

I eyed the driveway calculating whether I would be able to drive over the snow and up onto the road.  I had already put on my snow boots to trudge across the road to pick up the local paper.  That walk back and forth over and through snow drifts argued against trying to back my car out onto the road. That now seemed like a really bad idea with the prospect of my getting stuck at the edge of the road where the snowplows deposit their loads.  I started to walk back into the house.  After all, I could serve Carol  her regular breakfast featuring toast instead of the muffin.

And I could read the Times online as I do when the paper is not available at the store.  And it was about five degrees and windy, so getting back into the relatively warm house seemed like a good idea.

But not good enough.

A combination of my dedication to routine and irrational urge to get Carol her muffin even though, if I thought about it, I am sure she would be indifferent to the breakfast menu sans muffin, these factors pushed me to get my car out.  I also recalled that I had spent a fair amount of money getting my old snow blower in shape before I had decided to save myself the stress and strain of snow removal and contracted with the service that had failed me this morning.

I went back into the house to don my ski mask, extra heavy double gloves containing one pair within another, flipped up my hood to cover my hat, walked into the garage, propped open the door with my splitting wedge to clear my egress behind the snow blower and onto the driveway.

I primed the snow blower, set the choke, maneuvered my clumsily clad fingers onto the pull cord handle and yanked.

Nothing.

Yanked again.  And again.

Still nothing.

Right after it had been serviced, the snow blower had started at the first yank.

Not today.

I can be stubborn when an idea has rooted itself into my brain.  I remembered that I had a spray that encouraged non-cooperative engines to start.  I located the can, aimed it at the carburetor intake, sprayed.  Then checked the choke and throttle control, just to be sure, grabbed the pull cord handle, and yanked.  With a spark coming from the intake, the engine roared into life.

It took me about fifteen or twenty minutes to clear the driveway.  At one point, I almost walked out onto the road in a whirl of blowing snow that hid an oncoming car.  Fortunately, I saw it in time.

By this time, my hands, in spite of my gloves, were achingly cold, as was I, and tired as well from all the effort.  I came back into the house, sat down to rest and wait until my fingers stopped aching.

I told Carol that I was now off to the store.

I returned a little later.

With a muffin and the paper.

Carol had her usual Sunday morning breakfast, and about that I felt very good. Admittedly an irrational feeling, but still enough to lift my mood as I sat down to read the paper.

Tuesday late.  The wind is howling outside and snow is coating the windows.  We are in the midst of an on again off again snow storm that is supposed to continue into Thursday.

I managed to get into town to do my shopping.  Driving in I encountered a couple of near whiteouts from blowing snow, and the roads were icy.  Driving in these conditions always makes me uneasy with the thought of Carol lying helpless in her bed.  I know my concern is exaggerated, that sooner rather than later she would be taken care of should I be disabled.

But knowing that does not free me from the concern.

My plan today was to get my shopping done fast enough to leave me time to go to the florist we had been patronizing since moving here seventeen years ago, and pick up a flower arrangement for Carol’s birthday tomorrow.  I checked with Lexie, today’s aide, and she said she could stay a little while longer if necessary.

My timing worked out even better than I expected so I finished my last stop at the grocery store on Eighth Street and drove east the few blocks to the florist.

Only to find out, and then to recall, that it had closed.  Not for the season, but closed, as in out of business.  That florist had been in business for seventy-two years, and picked now to quit.  Actually not now, as I was reminded when I checked online: it had announced its closing last July, but I had not remembered.

I still wanted flowers for Carol, knowing, once again, my emotions were triumphing over my reason since the latter told me that it was an open question as to how tuned in Carol would be to her birthday. In the best of times, she was largely indifferent to the calendar although she was careful to keep a list of family birthdays that she could consult.  Her indifference was to time in general.  For birthdays, or appointments, she required some form of external prompt, such as a date book.

Now, of course, she is even less aware of what day it is.  Still it is her birthday.  I will read to her the few birthday cards that have arrived from those who apparently share my conviction that we need to honor the day whether or not she can be made aware of it. With that in mind, once I got home and had with Lexie’s help unpacked the groceries, I looked up florists in town, found a couple, chose one that had the best review and called up.  I had an unexpectedly pleasant conversation with the person who took my call.  She asked if I were from New York.  I confessed I was born and raised in Brooklyn.  She was pleased.  She said she thought so, being herself from New Jersey, and so we agreed we were both fish seriously out of the water.

I ordered an assortment that would be colorful but left the details to her.  My knowledge of ornamental flowers does not extend much past roses.  They will be delivered tomorrow.  I will show them to Carol, and read her cards to her. I am aware that I am insisting on doing all of this even knowing that if I let the day pass by without notice of its significance, Carol would be every bit the same as she is.

But I would be unhappy, remorseful, an obligation unfulfilled, one that belongs to the Carol that was.

On this one day I am perfectly fine with that.

Monday night after a brutally cold day.  This morning the thermometer on the outside wall across from the window in the green room hovered at zero.  Our heating system could not warm the air in the house to a comfortable level, so I went downstairs to the furnace room to find the noisy, but effective electric heater that Danielle used in her bedroom, brought it up to the living room and aimed it toward Carol’s bed.  I sit with my laptop in front of the window in which our air conditioner is permanently installed, so every once in a while I am treated to an icy breeze coming through the machine and the blinds I have hanging in front of it.

This evening Ryan came for a pizza dinner, and we discussed arrangements for the viewing tomorrow evening for Carol’s uncle. We’re going to try work it out so I will join him and his father and wife for the ride into town.

Tomorrow is my usual shopping day, but because I didn’t want to have to go back and forth to town two times, I availed myself of the Shipt delivery service for delivery today, and it worked so well I might just start using it in the future to free up some more time, perhaps to go see a movie.

Having decided not to tell Carol about her uncle’s death, I still wanted to have her represented at the service on Wednesday to which I am not going.  I asked her cousin Phyllis if it would be appropriate for me to write a few words on Carol’s behalf that could be read at the service, and Phyllis thought that would be a good idea.

And so I’ve been working on a short piece that, as best as I can manage it, will provide a sense of how I observed the relationship between Carol and her uncle, as well as including my memories of him.  I edited the piece one more time this evening,and printed it out to give to Phyllis tomorrow evening at the viewing.  I’ll probably take another look at it tomorrow morning.

I will do that because that is what as a writer I do.  I find it is always a good idea to take another look even though I will say without any false modesty my first draft of any piece of writing is always more than serviceable.  It’s applying my craft through several reviews of that initial effort that I find so satisfying.

Wednesday night.  Cold and snowy weather, so I only left the house to go across the road to retrieve the newspaper in the morning and mail later.  Hanna came as usual in late afternoon and after checking Carol informed me that she would have to do the paperwork to recertify Carol’s eligibility for hospice.  As if she has gotten better and will no longer qualify.  It’s a crazy system born out of our country’s reliance on some form of insurance to provide health care.

I attended the viewing for Carol’s uncle yesterday evening, and it was good to spend some time again with the extended family even if it took a sad occasion to provide the opportunity.  Phyllis read and approved the words I had written as a way for Carol to be present at the service today. She said it would be too difficult for her to read it. Instead she gave it to Carol’s sister Jane for that purpose.

I had taken my time writing those couple of pages through several edits. I was happy to put my writing skills to such a good purpose.  My writing life is the second of the three areas I have chosen to explore, beginning with my role as a caregiver, and intending to move on to parenting my three daughters and four grandchildren as best I can in spite of geographical separation from all of them.

I was not always aware of how central writing would become to my sense of myself.  I suppose I could always write well.  I don’t recall ever struggling, nor do I remember paying much attention to or being aware of my innate ability.  In high school I was invited to take honors English, but didn’t see the point of taking more of a subject that, for the most part, bored me, although I was then, and always had been, an eager and voracious reader.  That interest just did not transfer to my school experience.

I started college in the age of Sputnik as a pre-engineering student when  the country wanted engineers.  I had done well enough in high school math and science, acing my physics Regents exam my senior year, my father was an engineer, and so my choice made some sense.

However, it did not take long for me to discover that my relative success in high school was not a good indicator of my potential as an engineer.  I got through that first year working harder than I was accustomed to, and decided I was swimming upstream.

I took a summer course to finish my English requirement while figuring out what I would pick as a new major.  To my surprise, I thoroughly enjoyed that course, and rather than finishing a requirement I instead chose English as my major, figuring,that I might as well do what always came easy to me.

Then I joined the college newspaper, became its feature editor, and at the end of my college career I won the Brooklyn College senior essay contest, in spite of, or perhaps because of, the fact that I wrote the contest essay in one sitting in a lecture hall, and my handwriting is famously bad. My prize was a ten dollar credit for the college bookstore, which in those ancient days enabled me to buy two or three decent books.

At that point, writing remained an essential but not a primary part of my life. Earning a living and starting a family came first. To that end,  I became a college English professor, which gave me the natural environment in which to launch my efforts as a writer. I started publishing short stories and then my first of six college textbooks along with fiction and poetry.

When I completed my doctoral dissertation, I managed to place its last chapter in an academic journal, my one and only scholarly publication. That I managed to do that is perhaps one of the best illustrations of my lifelong intention not only to write but to publish. I cannot speak for other writers, but for me writing and publication are two sides of the same coin.

Simply I must write. If I am not working on something, I feel unmoored. If I were not Carol’s caregiver, I would be writing a new novel, or story, or poem, although now that I am retired I can say there will be no more textbooks.  I started this blog as a journal–something I occasionally assigned to my students but had never undertaken myself– at the suggestion of a good friend who thought it would not only be good for me, but sharing my experiences as Carol’s caregiver would be a service to readers in similar situations. Thus this blog, which provides me immediate access to those readers as well as others interested in learning about this dread disease. 

Most important, my commitment to my life as a writer prepares me for the transition I have been going through, and from which at some time I will emerge. I cannot imagine with accuracy when that emergence will occur as it can arrive a number of different ways.

But what I see now is that as a consequence of becoming Carol’s caregiver, I am losing my role as her husband. I suppose now I am her husband/caregiver.

Of course, I will always in fact and emotion be Carol’s husband until one of us dies. But in my day to day life I do few things that are purely husband functions.

Or perhaps I am more accurately her caregiver/husband as that balance ever so steadily moves in that direction. The interesting corollary to that movement, however, which only recently occurred to me is that my continuing investment in my writing career is nudging its way as a possible replacement for my role as husband.

I recognize that, I live with that.

Writing takes a bit of the edge off that stark acknowledgement while providing me a way to deal with it.

Friday afternoon in the community library.  As I pulled into the parking lot I saw several dozen, or perhaps more, children going up and down the large hill at the side of the lot.  Those going down were doing so on their bellies.  No sleds.  I’m guessing they were enjoying recess time from their classes.

Yesterday morning, I received a text message that Carol’s uncle of whom she was very fond had died.  I’ve been thinking about that message in two very different ways.

The first way was the wording of the message, which stated that the uncle was completely healed.  I was, reasonably I think, at first a bit confused.  Healed from what?  Injury? Sickness? The question popped into my mind.  The next sentence answered that question by announcing that the viewing would be at such and such time, with the service the next day.

So I understood.  I will return to the cause of that initial confusion and what that confusion leads to for me.

The second, and more significant response, to that news was a different question, namely, should I tell Carol?   Maybe the answer either way seems obvious, but it was not, and still to a certain extent, is not so clear. I’ve been anticipating facing this situation in terms of Carol’s mother who has been for several years in a skilled nursing facility.  She is, I believe, 94.  About the same age as the uncle, who as far as I know had been living by himself although always with his daughter, Carol’s first cousin, nearby.

The uncle’s death, then, arrives within the context of the preparatory thinking I have already been doing concerning Carol’s mother.  The decision I have made after wrestling with the question since I received that message, and in part based on a couple of more professional recommendations, will likely guide me in deciding what to do when Carol’s mother’s turn arrives.

The first professional recommendation came in a purely coincidental conversation with Hanna, our hospice nurse late Wednesday before the text message concerning Carol’s uncle arrived the next morning at 7am.  I do not recall why I raised the subject with Hanna, but I shared with her my question as to how I should handle Carol’s mother’s death. I do believe my opening concern was securing relief coverage that would enable me to attend the funeral, which would be announced with little precise forewarning.  Hanna assured me that hospice would patch together some kind of coverage.

Having settled that concern, I moved on to the deeper more difficult issue.  Should I at that time tell Carol that her mother had died.  Hanna answered the question by reflecting her own experience that suggested that the only time she had observed a problem with informing a dementia patient of the death of a loved one was when that patient, lacking memory, but still capable of verbal expression, would repeatedly ask after the person who had died, and not remembering that she had been informed that the person had died would have to be told each time that the individual was no longer available.

In Carol’s case her verbal expression is severely limited, and I cannot measure her memory loss with precision.  She may no longer know who I am, but she seems perfectly comfortable with my caring for her.  Not too long ago, but still not recently, she would occasionally call out for her mother, and I would assure her that she was being well cared for where she was in the facility, and that comforted her.

So Hanna’s informed response did not help me much as my unanswerable question concerns whether there’s a place in Carol’s inaccessible long term memory for her mother.

Is her mother still in her mind?

I don’t know.  I suspect not, but I cannot be sure.

If she is, wouldn’t it be the right thing to do to tell her when her mother dies?

Maybe yes, maybe no.

My rational self tells me that no is the better answer.  What point would there be to giving Carol any sorrow at this juncture in her life?

My emotional self, however, feels that I would be doing her an injustice if I didn’t tell her something so vital as the death of her parent.

The balance was shifted to the negative today, albeit perhaps only for now,  by the answer I got to the question from Tonda the very experienced aide.  Tonda simply declared that in her view Carol would not understand what I was talking about should I tell Carol her mother had died.

For all her experience, though, I am not sure Tonda is right because there continue to be instances where although Carol lacks the ability to articulate her words, she does definitely seem to be processing what she hears and responding to it facially or with a laugh, or with the one or two words she can still say. In that latter regard, a week or two ago, she uttered a complete sentence, “You can’t do that,” apparently to some thought in her mind.

In less fraught situations, I deal with this question when Carol, as she is doing now, receives birthday wishes, or a note from some friend or acquaintance, which still occurs, coming from people either unaware of, or the degree of, Carol’s dementia. In those cases, I have no problem passing on the greeting to Carol, and cannot say with certainty as I sit here typing whether the names of these individuals register. It doesn’t seem to matter. These correspondences do not arrive with any emotional baggage.

But the ones concerning her mother, and by her extension her uncle, are certainly in a very different category, one for which my decision, at least as I see it, is consequential.

So without clear guidelines based on discernible evidence, the question remained. My head argued with my emotions, and my head prevailed in that it could see no good outcome to telling Carol her uncle had died. If he still resides in her memory and resurfaces into her conscious mind at some point, I decided, let it not be spoiled by the fact that he is no longer a part of her life.

Whether my decision concerning Carol’s uncle will set the pattern for her mother or not, I cannot at this point know. Likely it will, because Carol shared a deep and aiding bond with this man, not equivalent to the one with her mother, but not very far short of it.

In any event, I have arranged for Wendy, our very accommodating neighbor, to stay with Carol while I attend the viewing. 

Returning to the phrasing of the news from Carol’s cousin, that metaphorical view of life as an illness from which at death one is cured immediately took root in my brain as something worth writing about.  And, no doubt, that root will grow into a column, which is already forming in my head, an exploration of the different ways in which writers over the centuries have presented attitudes toward death. 

But for the present, it is enough to say that writing about this difficult decision has brought it into a focus, has placed it out on the table where I can poke it, turn it over, and make up my mind.

And that is the best I can do.

Thursday afternoon, I’m in the community library.  An elderly patron has just sat down across from me and unloaded an armful of thick books onto the table next to her chair.  They appear to be novels.  Perhaps she is stocking up reading material for the winter, which most definitely has arrived.  Outside, as I drove up, I saw kids sledding down the hill across from this building.  The woman stands.  Having scanned the book she has already chosen, she might be looking for more, or replacements.  It is the former.  She returns with two more.

My own preparations for the winter were to secure a service to keep my driveway open, and to schedule a checkup of our heating system, now accomplished.  In the past, I would gather firewood from our heavily treed property, cutting and hauling what I could reasonably reach.  I would supplement that by buying face cords as needed.  I never was able to calculate whether I was actually saving money on our heating bill, but we had inherited a working wood stove, heating by wood is part of the culture hereabouts, and the exercise was good for me.  Carol would do what she could to help, hoisting logs I cut into our Subaru SUV to bring them from our woods to our driveway to be stacked and split, an carrying split logs into the house. 

I suppose her farm girl upbringing resurfaced when we moved here. Either that, or she just liked the physical labor.

That was then, but the work involved, the limited savings if any, and loss of my work companion convinced me to just rely on our central heating. A few split logs remain in the rack next to the stove, and there is small pile of unsplit logs on the side of the driveway.

The woman’s companion, his arms full of books, joins her and they are off to check out their choices.  They clearly represent a pre-digital culture, and I silently salute them.

Having made sure ingress and egress to and from our house has been secured, along with a dependable source of warmth, I can turn my thoughts to how I hope to get through this winter.  Carol and I would sometimes take off for Florida for a week or ten days.  Of course, that is not an option now.

My laptop tells me I’m about to lose power, and I didn’t bring a power cord.  So I guess I will end this session prematurely..

Monday night, late.  I had a very leisurely Sunday.  I, read the Times pretty thoroughly, and  received a call from Tracy and Fred in their new Tesla on their way to McSorley’s, the oldest continuously operating tavern in New York City.  My memory tells me that Carol and I had a drink in that landmark. Sloppy mixture of snow and rain arrived today and might linger on to tomorrow, my shopping day.  We’ll see.

In yesterday’s Times there was a full-page ad for a stage version of Carol’s favorite book To Kill A Mockingbird, starring Jeff Daniels as Attica Finch.  Sounds wonderful.   We most certainly would have gone to see it when we lived in New York. Now, I can only mention it to Carol without getting much of a response.

She did love that book.  When first we reached the point where she was having trouble keeping her focus on a line of text, I bought her the large print version.   It did not help, and it sits pristine on her bookshelf.  Since she could no longer read, I got the audio book from the library, and she listened intently to the whole thing.  She was more in the here and now then and could focus for good periods of time.

I always thought she saw a good deal of herself in Scout as one reason she so much liked the book, and add to that Scout’s relationship with her father, which I believe Carol saw as mirroring her own with her father.

Well, not much point dwelling on all that.

Instead, as the new year starts I am beginning to see my life more clearly.  It has three parts: caregiving, writing career, and parenting.  Anything else has to fit in the cracks between those functions.

I will explore those areas to see if I can come to a better understanding of them, giving each due respect, and balancing their sometimes competing demands.

Tuesday night after an uneventful day.  Did my usual food shopping although in spite of being guided by the shopping list app I downloaded on to my phone, I did not buy the giant jar of applesauce I will need within a day.  I administer Carol’s meds twice a day in applesauce, a big improvement over my previous method of just putting them into her mouth.  I’ll have to buy a  jar of applesauce locally to  take me to my next shopping day in town.  I discovered, not for the first time, the shopping list app only works if it includes everything I need to buy.  That was not the case today as I had not put applesauce on the list.  Add that to the lesson I learned some time ago, that it is also useful to actually consult the list while in the store.

Just as I sat down  to write a little while ago, my phone told me I had a Facebook friend request.

From Carolyn Johnson Lewis.

And there on my screen smiling back at me was the image of Carol’s face.  We all get these hacked friend requests from time to time.  But this one was nasty for all kinds of reasons I do not want to explore at the moment.  I deleted the friend request and will try to delete the incident from my memory.  However, I can’t get that image out of my mind and will not try to write.

Monday night. Social worker here during the afternoon, and then Ryan this evening for dinner  Instead of pizza or Chinese takeout which is now closing on Mondays, we ordered dinners from the Grill up the road. 

The social worker assisted me in preparing the documents I will give to the hospital designating my choices for patient advocates to make medical decisions for me if I am incapacitated, and to indicate other details of my demise as I see fit to indicate at this point such as whether I want to donate my body parts, or what I might want for comfort as I am dying.  As for the latter, I first skipped the question, but then returned to it to indicate classical music or jazz, thinking it would be okay to go out with Mozart or Miles in my ears.

I have wanted to get these papers on file at the hospital for some time.  You never know when you might get hit by a bus. Or out here, perhaps I should say a tractor.

More seriously, doing this preparation without any consultation with Carol is just another of the seemingly endless reminders of what has been lost.  I can make these arrangements, must make them, and the only way I can make them, is to do so the same way I do everything else by just dealing with the process and shutting the emotions down.

Last time, I promised myself I would begin to explore the three areas of my life; caregiving, writing, and parenting.  I am not going to spend any energy detailing ordinary household responsibilities, paying bills and attending to necessary maintenance and repairs and such.  Nothing about those is special to my situation except insofar as they are no longer a shared burden. 

The dog is of no use in these matters.

My caregiving responsibilities seem straight forward enough, but upon reflection they are somewhat more complicated.  Of course, on the first level, Carol requires care, and either I, or some person or agency I transfer that responsibility to will see to it that her basic needs are provided for. 

On another level, I intend to make the quality of her life as good as I can.  That seems obvious, but what has occurred to me in a kind of duh moment is that for me to be successful in that endeavor I have to attend to the quality of my life.  The two are inseparable.  I have to maintain good spirits to be able to keep her spirit up.

For a brief period of time, such as that spent with Carol by the relief aides it is possible to be chatty and positive and to go about necessary chores with a smile.  Then go on to the next client or home at the end of a shift.  But for me, as the full-time caregiver, I cannot sustain that kind of effort unless it emanates from something genuine.

In me.

If I come to look at my taking care of Carol as a job, I won’t do it very well.

Which leads me to my second duh moment.  I have now learned in ways I never understood before how profoundly I love this woman. I cannot describe the feeling that courses through me.  Not all the time, of course.  That’s absurd.  But from time to time it rises in me like it has never done before.  Perhaps it is because I know I am going to lose her, have in fact to some degree already have lost her as her cognition fails her, and because of that sense of loss I hold on even more  tightly.

And in those moments, in a strange way, I am content.

I may want to return to this idea, but that is enough for now.

New Year’s Eve, about twenty minutes until 2019 arrives.  I am quite sure that at 12:01 the world is going to be pretty much the same.

I am, as I was last year, listening to WQXR streaming from New York, and as it was last year the station is offering Beethoven’s 9^th. I will keep it on so I can here the wonderful Ode to Joy.  As I did last year. Some things remain the same.  Ah, here comes the Ode. Will it end at the stroke of midnight?

Because of the holiday tomorrow my Tuesday aide came today, but a little later than usual as the first consequential snow storm had arrived and was finding its voice.  Snow or no snow, it was my grocery shopping day. Driving in to town, around town, and then back required patience and care especially on the Peninsula where visibility was limited and the roads slippery.

Still, I did as I had planned.  I did my three stop food shopping and then picked up Chinese takeout for supper with Ryan.  Carol ate with good appetite, and Ryan and I chatted until it was time for him to go home about 8:30.  It took him some time to get through the snow on the driveway and out onto the road.  I thought, at one point, I would have to go out and push when he was stuck, but he managed to rock himself out.

After dinner, I thought I’d watch a little television only to find that the satellite signal was interrupted.  I trudged out to the disc in the backyard and scrapped ice and snow off of it.  That restored the signal, but I soon found there was nothing I cared to watch.

I am trying to get into the New Year’s spirit and not doing a very good job of it.  The whole thing, of course, is absolutely arbitrary.  Yes, the earth orbits the sun in a year, but where we choose to mark the beginning point, and therefore, the ending point  is just picking a place on a circle and placing your finger on it.  Until the middle of the eighteenth century, the new year started in March at about the time of the vernal equinox.  That certainly makes as much sense as the first of January.  As that day arrived, I am pleased to report that Beethoven’s Ode sailed right on through midnight. For another four minutes or so.  Not much. But it is the principle.  We do not have to be in thrall to the clock although I confess myself usually guilty of too much time awareness.

So, I am nitpicking instead of celebrating.  Or coming up with resolutions.  Let’s try the latter. 

I resolve to be less time conscious.  To let life breathe on its own.

Nothing could be more important as I continue dealing with Carol’s condition.  I’m looking for patience and forbearance.

Some measure of both for me, and a bit more to spread around among those who have not found a way to be a part of this situation.

Tuesday night, reaching the end of the first day of the new year, which greeted me with six to eight inches of freshly fallen snow coating the ground and anything on it.  However, to my immense relief I saw that my driveway had been cleared while I was still asleep.  Later in the morning Rocco came by on his riding snow blower and neatened up the first job.   I thanked him and alerted him to my contract with the landscaping company.  He said he would just come by when he had the time to see if more needed to be done.

Aside from my brief conversation with Rocco I spoke to no-one else today. Even the phone was silent, either because it was a holiday or more likely because the push to sign people up for Medicare Advantage programs has ended for now.  I posted a picture of the snow on Instagram and Facebook to invite responses and received several.  I guess I need to feel connected when nobody is scheduled to come by

Just took it easy for the day, attending to necessary chores and giving myself a good nap when Carol was dozing, as she usually does, in the late afternoon.  I read one long review of a biography of Thomas Cromwell a key player in the turbulent years of Henry VIII.  Besides my usual interest in people and events historical, Cromwell is featured in the two novels by Hilary Mantel covering this period.  They are superb historical novels, and I await the forthcoming third in the series.  The reviewer of the biography made clear that Mantel made educated guesses to fill in what the historical record did not offer.  As a writer of historical fiction myself I understand that the story must move along. It can’t just stop where the record is mute. Nor can you let the facts get in the way of that movement. Mantel is masterful.

I am reminded that Carol, too, had a strong interest in history in two particular directions: local and feminist.  In terms of the former she departed somewhat from the usual focus hereabout on the settlers and subsequent farming families.  Her interest extended to the native American populations who appear regularly in her stories.  As for the latter, she was a quiet but determined feminist as titles on her bookshelves make abundantly clear and her female characters are strongly drawn.

It is with my usual sadness, I pause to record that the last book I bought for her was the massive new biography of Queen Victoria, and to recall as well, how she could neither read that book, nor even have it read to her, as I attempted to do.  She most certainly would have enjoyed watching the PBS series on Victoria but she had lost her ability to watch television when it started a couple of years ago. Tonight after supper I spent some time watching television, more than I usually do.  There really wasn’t any news on, which ordinarily I would have checked in on, so instead I watched a little college football.  Growing up in New York I was not very interested in college football because the professional versions are so dominant and most institutions in the city do not field football teams.  As a result the only time I paid attention to college football was when the various bowl games were televised on New Year’s day.

After catching parts of a couple of games, which did not hold my attention, and with no news being broadcast, Carol asleep, and not feeling like reading, preferring to veg out in front of the television, and reminded by an ad arriving in my email that as a library card holder I was also registered with Hoopla, I decided to see what it could offer for my entertainment, and found the film version of Phillip Roth’s The Human Stain, which I read some years ago.  The film featured some good actors, including Anthony Hopkins, Nicole Kidman, Ed Harris, and Gary Sinise, so I tuned in to it.  I didn’t remember the novel well enough to judge how good a job the film adaptation was, but the movie was, as you would expect with that cast, well acted.  After a while, though, I was reminded that the plot device Roth used to drive his story strained credibility.  Still, the film did its job of providing a couple of hours of decent entertainment.

Neither Carol nor the dog were up for a discussion of the film, so I joined them in sleep.

And so 2019 began.

Thursday night.  Christmas has come and gone.  Carol and dog asleep.  I have just finished cutting about five hundred words off  a story so that it almost slides under the word limit of the market to which I want to submit it.  I figure I’m close enough, and there is no more fat to trim.

As always, I enjoyed the pruning process, which is where the necessary craft in writing is usefully applied, where the writer must remove himself or herself from the product being produced and attempt to see it as readers will.  That is a hard learned skill the application of which is a source of satisfaction.

We are getting through this holiday decently well.  My relief aide schedule had to be rearranged  because both Christmas and New Year’s day fall on Tuesday.  Nothing much will be open on either day, not stores, or the library where I sometimes work.  We switched my Tuesday aide to Wednesday after Christmas and to the following Monday before New Year’s day.  Today, I had no one come because of a vacation issue with my Thursday aide.  I could have perhaps agreed to a replacement who had never been before, and that just didn’t seem worth doing

Tomorrow, I’ll have my usual lunch with my guys.

The holiday season will soon be in the rear view mirror. We are on the other side of the winter solstice so even though we are just entering the long northern Michigan winter, snow on the ground and more to come, I prefer to think that we have turned the corner and are heading toward the light.  It may be distant, but each day when the sun hangs in the sky a little longer is a positive.

I try to convince myself that this meteorological fact will somehow have some parallel in my life.  I cannot, literally, move out of the darkness of Carol’s disease.  No increased sunlight or metaphorical light can accomplish that magical feat for me.  But I’ve never been satisfied with the status quo, whatever that might have been.  I always believe, whether with reason or not, that things will somehow get better.

And there are signs that may be the case now.  In several ways, I am experiencing more people interactions, both with Carol’s family, with my daughters, albeit  long distance, and with a variety of respondents to my newspaper columns, those mostly of the digital variety.  It seems as long as I keep making myself available one way or another, people will respond.

And that is a very good thing.

Friday night, dog snoring on the floor to say all in her world is just fine.

Sent an email to my lunch companions containing a link to a review of The Penguin Book of Hell  in the New York Review of Books.  I thought they would be interested in that subject as we had touched upon it this afternoon as tangential to our discussion of morality. Our lunch time conversations do move between the largely inconsequential to the serious. But that is not why I mention this email.  I saw that it went out under Carol’s name because  the periodical’s account has been in her name for some years from the time she renewed it.

Renewed it for me.

She never read that periodical whereas I’ve been reading it most of my adult life.  Just one more of so many reminders of the care and respect we extended to each other.  I recall subscribing to Scientific American, which I don’t read,  for her.  And so it went.

And now I’ll do what I can for as long as I can for her.

Sunday night after midnight.  Spent the day watching a lot of football between caregiving responsibilities.

Carol tried to become interested in football.  We would sometimes watch games together, and I would, at her request, explain the fundamentals.  Terminology was one difficulty.  Why was a play called a down?  There is no answer, any more than why a pitched ball is sometimes called a “ball” and sometimes a “strike” whether the batter strikes at the ball or not.

But she just could not get interested enough to learn enough to share my enthusiasm.  It wasn’t, as one might guess, that gentle soul that she appeared to be, she objected to the violence of the game.  No, not this woman, who thoroughly enjoyed watching two fighters beat each other into submission in a boxing match.

Perhaps it was the lack of constant action, so many pauses between plays, and each play often taking no more than a few second.  In this regard, she was beginning to show some interest in fast moving games like hockey or soccer.

She would watch baseball with me, and root hard for the Detroit Tigers.  I imagine her interest in this sport was at least in part associated with her father who was a fan, and who was, so Carol told me, named by his father after the famous old time pitcher Walter Johnson.

Her favorite sport, though, was basketball, and here the reason is clear: she had as a girl enjoyed playing that game, remembering as she reminded me more than once that she had been captain of her team in school.  If we found a woman’s basketball game to watch, she would settle back and enjoy it.

For those who enjoy competition, and Carol in her way, certainly did, sports is an acceptable outlet. Carol’s ambitions as a writer was just another expression of her innate competitiveness.

I, too, confess that I am more than a little competitive.  I do like to win.

But I can say with honesty we never competed with each other.  As I write this, it occurs to me that statement includes any form of competition, be it a game of checkers or scrabble.  It could be that Carol just did not enjoy those kinds of games although I certainly do.

As sugar sweet as it may sound to say, the answer might just be that we just wanted each other to do well in whatever we were doing.  In games with winners, there have to be losers.  And just perhaps we did not want to see the other person lose.  As corny as that sounds, and although I have never thought about this question literally until this moment with my fingers banging down the keys of my laptop, it may well be true.

There are different kinds of light, those provided by sun or moon, those captured in metaphors of hope emerging from darkness, and those that memory shines on those whose lives are so inextricably intertwined with our own.

At the center of all of these, for me, is Carol.

Friday night.  Carol in her chair, the dog sleeping on the floor.  Snow falling as befits the official start of winter.  Even though I spent some money to get my old snow blower repaired and ready, I decided to contract with the landscaping company that does my fall cleanup to take care of snow removal.  I just don’t want to have to deal with that issue.  If this deal gets too costly, I still have a reliable snow blower.

This is the start of an extended period of isolation, longer than my usual weekend break, because this coming Tuesday is Christmas day, and although I might have been able to pay extra to have my relief aide come, if she were willing, I chose instead to switch her to Wednesday.  I usually do food shopping on Tuesdays but stores won’t be open.  Nor will the library where I sometimes go to work.  So, I just moved everything to Wednesday.

Not a happy prospect.  But Ryan is coming for his usual dinner Monday night, and rather than plan on our take-out choices I bought a petit roast.  I haven’t cooked one in quite a while, and this seemed like the right time.

Otherwise I guess I’ll spend more time writing and reading.

And that is not a bad thing.

Saturday night a few minutes after midnight.  Just finished sitting with Carol, holding her hand, as she drifted off to sleep.  As I settled into my chair, the dog decided her day was also over and strolled to her bed.

The first day of the long stretch between relief aide visits leading up to and past Christmas.  A little snow on the ground, just enough to please those who believe the holiday must be white but not enough to pose a problem.

I guess kind of the best of both worlds although I could do without both.

The day went by easily and fast because it was filled with digital contact with my daughters.  I hadn’t heard from Danielle for a while and so I sent her a text to which she responded after a while, and we caught up with each other messaging back and forth.  I sent her a picture of the 1998 ornament on the little artificial tree, and she responded that she remembered making it.

As much as I would like to see her it seems a visit home for her is still a ways off.   A piece of music from Interlochen Public Radio provided the impetus for me to get in touch with Kerri and Tracy, as well as including Danielle in the ensuing messaging.  The station played a track of a klezmer band doing its version of The Little Drummer Boy.

I was perplexed.  I couldn’t figure out whether I was more irritated or more amused by the extraordinary marriage of Jewish musical style performing a tune celebrating the birth of Christ.  Klezmer music is upbeat and happy, played at weddings and other celebratory events.  To hear it employed for this Christmas song was just weird.  There is no other word.

So weird that I thought I’d share it with my daughters, two raised in Jewish households, and one in the Carol and Steve combo.  Religion was not prominent in either of those households.

Of course, I would have loved  to be able to  talk to Carol about this musical experience, but she had slept through it and in any case would have only been able to offer a small response, a smile, or a frown, or perhaps a word or two.

But whatever it would have been I would have been happy to receive it.  I’m pretty sure she would have been ambiguously amused.  Klezmer music is hard to resist, and she wouldn’t have approached this performance from my more complicated perspective.

As it turns out, and as I learned later, Tracy was preoccupied and so did not respond to my message.  Kerri, on other hand, did and we discussed it through a number of messages.  We first checked to determine if the klezmer band is in fact a Jewish band.  It is.  We agreed the track was weird, not just strange, or different, but requiring a stronger descriptor.  Weird will do.

To share the music, I found a YouTube version by the same band.  That version of course has images, and the images, in cartoon figures, emphasized the religious message of the birth of Christ, which is not as prominent in the song as heard but not seen.

Adding those images sealed the deal for Kerri and me, as we agreed that whatever the band’s motive in producing this track was, the result was disrespectful to both traditions.

And yet, at least for me, that judgment is offered with a lingering smile.

Christmas eve after a good dinner featuring the roast with Ryan. Carol asleep in her chair, the dog as usual stretched out on the floor.

I had trouble finding music to listen to today, even on the classical stations.  I have no objection to Christmas themed music but what was offered today just wasn’t that interesting.  Ditto popular music with somewhat less tolerance because, well it’s popular music made primarily to cash in on the holiday and is just otherwise not that good.  When I heard the fourth or fifth version of Rudolph, that time by Dean Martin, I had had enough and put on a CD of Pavarotti doing serious holiday music. I could listen to him sing the alphabet song.

Carol seemed indifferent to the music until she heard Pavarotti singing Ave Maria, and then she perked up.

During the afternoon an unexpected visit from Jane and daughter Marissa bearing gifts, followed by a long overdue catch-up conversation particularly with Marissa who will be finishing college in a year.

That socialization followed a weekend of long distance parenting with my daughters.

With Kerri, as described above, messaging about the klezmer band playing Christmas music, with Tracy a phone call later about  various issues that she was dealing with, for which I served as a sounding board and one person support system, with Danielle the next day, an extended conversation concerning a life decision she faces, for which  I was not so much as a sounding board but rather a source of fatherly advice.

Three daughters, three different interactions, all of them filling my usually isolated weekend with the reach of long distance interactions.

These interactions turned my head toward the future, reminding me of the ongoing parenting roles available to me, valuable in themselves, but more so as a mechanism  to help me break my brooding chain to the lost past with Carol.

And just as important as breaking that chain is the strengthening of my resolution to continue my caregiving role with Carol by putting it into a larger context, one that extends beyond the possible limits of those caregiving responsibilities.

Just trying to keep my legs underneath me and my head on straight as I travel along this unknown road.

 

 

 

 

 

 

 

Wednesday night after a busy day, starting with my going to town for regular blood work while neighbor Wendy stayed with Carol. While I was out, the podiatrist visited to cut Carol’s toenails, and then after I returned Hanna arrived for her weekly visit.

 Carol is still in her chair, and I will need to move her to the bed in a a little while, so I will just get something started.

I sleep on the couch near Carol’s bed.  Every morning I go upstairs to shower and change my clothes for the day.  I have been doing this for quite some time ever since Carol was no longer able to climb the stairs and we were both sleeping on the couch before I ordered the hospital bed for her.

As routine as this trip upstairs has become, my sensibilities are still shocked, like a splash of cold water in my face, as the reality of the fact that never again will we share that bedroom while it remains exactly as it was before.  Carol’s robe, which she no longer wears, is still on the hook on the door to the peculiar little closet that has been carved out of a corner of the room.  Next to her dresser, neatly sitting on the floor, are her winter boots, and next to the bed, her slippers, pink like the robe for which it was bought as part of a set.

I could go on and catalogue other item from our previous lives together in that room, but the point simply is that the room looks exactly as it used  to.

Before.

The bathroom the same. I have not removed her towel from the towel rack, or the economy size load of her Q tips from the shared closet that served as our medicine chest, or the glass bottle, sitting on a shelf across from the sink, blown by her former boyfriend, a relic of a failed relationship that we rarely discussed.

The entire upstairs is like a museum.  To remove any object would be, it seems to me, a desecration.

A start.  The well is dry for now.

Tuesday night after a day that began with some good news.  An editor at a university press whom I queried a couple of days ago about Carol’s story collection wrote to say she would take a look at it.  These days even getting one foot in the door is difficult.  I have no doubt the collection is well worth publishing, and hope this editor agrees.

Besides acting as Carol’s agent, I’ve been spending more time pursuing my own writing career, sending out queries for my unpublished work and also writing columns for my new once a month–soon to be twice a month–responsibility.  This is healthy for me.    I loved teaching, got satisfaction as an administrator, but at the core I saw myself as a writer who did other things to pay the bills.

In my last writing session I was riffing on my two bedrooms: the one Carol and I used to share, and the makeshift sleeping arrangement now in the living room.  Going into our former marital bedroom for fresh clothes draws me back to what is lost.  That motion is constant like the tide on a beach working its way up the sand before withdrawing again, the back and forth repeated endlessly.

That might work for the tide, but it’s not a comfortable way to live.  I need to feel something that represents movement away from that dip into the past upstairs and the return to the present downstairs  every day.  The same back and forth holds true for the times I work in my office next door to our bedroom where my new desktop beckons although I do most of my writing and other computer work on my laptop while sitting in my armchair across from Carol’s bed.

My life as a writer provides that forward thrust away from the untenable past.  True, it is an element from that past but continuing it now is like walking away from that beach, perhaps after spending time in the ocean waves.  You can’t stay in those waves.  You either let them drown you, or your break away from them.

Focusing on writing, both producing and marketing is a way for me to free myself from the clutches of the pull between the present and the very intense connection to the past.

I don’t at all regret or resent assuming my caregiving responsibilities and intend willingly to continue them as long as my strength permits me.

But I do not want to lose myself in them.

Sunday night approaching midnight.  In the absence of Masterpiece Theater for my usual television viewing I watched a football game.  Having played some football myself, and having been a lifelong fan, I can watch any game that is competitive enough to hold my interest.

Yesterday evening as we ate supper, the radio, as usual, was tuned to the Interlochen station.  As is inevitable this time of year, that station’s programming was immersed in the holiday season.  However, the program that came on as we ate offered an interesting variation by presenting an hour of Hanukkah themed music, even though that holiday had already come and gone.  What made hearing that music yesterday at dinner a little odder was the fact that during the afternoon I had retrieved the miniature artificial Christmas tree, strung wit blue lights, that we have had for at least twenty years.  I can pin its age to that minimum with assurance because one of its ornaments, fashioned by our daughter, is dated 1998.

Our piano sits at the intersection of our dining room and living room.  The radio had been on one side of the instrument closest to the living room.  I moved it  to the side of the piano farthest away from the living room so I could place the tree on its spot.  I plugged in the lights and after lunch wheeled Carol over to the tree so she could see it, and she responded with an appreciative smile.

So, last night at supper, the radio playing Hanukkah themed klezmer music was on one side of the piano while the little Christmas tree with its blue lights was on the other.

A perplexing, almost jarring juxtaposition of the two traditions to which neither of us adhered with much intensity.

And a not unpleasant intrusion of the past, an idea, perhaps, worth exploring in more significant ways looking toward the future.

Thanksgiving day was quiet.  I expected to get a dinner delivered from the Methodist Church community feast as that has happened in the past, as well as one from Brad and Amy who have thought of us on these occasions. We did receive both. We had the first on Thanksgiving, and the second on Saturday. 

For some reason, this Thanksgiving I remembered one many years ago when Carol suggested we have lasagna.

Which we did.

And shocked my two daughters although I doubt either now remembers.  And I cannot recall whether they shared that meal or more likely I just told them about it.

Nor am I  sure why we made this culinary choice other than to suggest that perhaps neither of us wanted to deal with a turkey and all the usual side dishes.  Also, thumbing our noses at conventional behavior was probably part of the motivation, as we used to have our chocolate mousse before the main course when we ate out at our favorite spot on Montague Street near the Promenade in Brooklyn.

In any event Carol’s appetite was good for both of this year’s very typical dinners.

Her appetite has improved because Hanna, the hospice nurse, ordered atropine eye drops to dry up the phlegm that has been accumulating in Carol’s throat.  As counter intuitive as it is to use an eye medicine for this problem, it works.  I apply a couple of drops onto Carol’s tongue twice a day, and the phlegm issue is largely eliminated.  I have to be careful to make sure that the drying out process doesn’t work too well and begin to interfere with regular urination.

Monday night after a good day.  Carol ate well all three meals, laughed from time to time, and slept less than usual.  Ryan joined us for a pizza supper, which reminded me how much I miss Papa Nick’s New York pizza. Mentioned that to Carol and she seemed to agree that the loss was incalculable.

The other morning as we were getting ready for the day, Carol said, in the plaintive tones she sometimes uses in articulating this word, “Steve,” uttered with a look on her face that indicated something was bothering her, or perhaps scaring her.  As I was standing right next to her bed, I took her hand, and said, “I am right here, Steve is right here,” and gave her hand a little squeeze for emphasis.

“Thank God,” she replied, articulating those two words quite clearly.

I’ve been down this road so many times before, it is both a little tiresome to repeat  the obvious question but necessary at the same time.

Did she connect the physical me with the Steve she was summoning? That her response “Thank God” seemed so heartfelt only adds to the significance of the question.  It is good, of course, that the Steve in her head, whether connected to the Steve holding her hand or not, is somebody she still feels bound to, someone whom she can call for when troubled.

But here is the recurrent dilemma.  Perhaps it is not such a good thing after all because it reinforces the idea that we are still suspended between the then and now heading toward a future at which point the then might disappear, at least for her.

It will always stay with me.

I don’t want to leave it, and I cling to every instance when it reasserts itself, cling to it while acknowledging that doing so is, in the long range view, futile.

A start.  Much more to explore with no hope of finding a comfortable resting place.

Sunday night.  A cold wind blowing outside.  Carol asleep under the new blanket I ordered online for her on the advice of Hanna who thought the afghan I was using was not warm enough because of its loose weave.  Carol and I have always had very different thermostats.

Have not been writing in my journal that much this past week, not because of any problems, but rather the absence of difficulties providing me with time that I have decided to devote to my writing career.  I am aggressively marketing two unsold novels, and writing my columns as ideas occur to me.  And now, once again it is late, and so I will just try to pick up where I left off, hoping to spend a good writing session on it.

The “it” was provoked by Carol’s response to my insistence that Steve was standing right next to her bed holding her hand to which she replied, quite clearly, “Thank God,” raising the continuing dilemma of how to deal with such emotionally fraught moments.

Of course, one part of me is delighted for a couple of reason.  First, the answer in its clarity illustrates a good level of cognitive functioning.  As new as I am to dementia, I have no measuring stick in terms of movement up and down along a scale of cognition other than the everyday observation that there will be good days and not so good days.

In that regard, recently I have not seen much fluctuation.  It is true enough that Carol does not often articulate clearly enough for words to be apparent, but occasionally she does.  And perhaps more to the point, she seems these day more responsive to direct questions that require a yes/no response, such as “Are you hungry,” which sometimes elicits a strongly positive response.  In addition, she is laughing more at particular things I say, sometimes comments directed at the dog over whom I occasionally trip, or just old dog that she is, decides to plop down right in the path of the wheelchair.  And, finally, in this brief survey of her cognition, I am fairly well convinced that she listens intently to the music I have playing throughout the day.  I have asked her from time to time whether she is listening, or whether she is enjoying, the music and she usually responds in the affirmative.  I have also seen her moving a foot in time with the rhythm she hears.

So from that perspective, her ‘Thank God” response fits that pattern.

But it also raises that other bothersome issue, namely, whether or not she connects my name with my body.  There is no way to get a good read on that.  I push sometimes, but do not get a definitive answer to that question.

Which in some ways is quite important..

Because it underscores the tension in my situation between knowing I have to let go of my sense of Carol as she was and my not wanting so to do.

What occurs to me as a way to explore this tension is to focus on  my moving between our upstairs bedroom and the couch on which I now sleep.

That will be for next time.