A Most Difficult Decision

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.

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Winter and Duh Moments

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.

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New Year’s Eve

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 9th. 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.

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Toward the Light

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.

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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.








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The Persistent Past

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.


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.

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And She Said “Thank God”

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.


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Wednesday before Thanksgiving.  Serious cold weather arriving perhaps driving temps into single digits. 

Because I have been spending an inordinate amount of time working on my next column, I have a lot of ground to cover to catch up.  I’ll begin where I left off with Clare’s suggestion that I consider signing up for hospice services.

The word “hospice” suggested end of life to me and that is why my initial reaction to Clare’s mentioning it as a possibility for Carol was to want no part of it.  When first I realized how serious Carol’s illness was and at that time someone mentioned hospice for her my mind jumped to final arrangements.  I even got in touch with a neighbor whose husband had recently died suddenly from a heart attack to talk with her about whom I should be talking to.

About final arrangements.

For Carol.

Because of the suggestion of hospice.

My original understanding, perhaps from media sources, was that hospice  was a prelude to summoning the undertaker, a transition period when a dying person was made comfortable.  At the time, hospice was first suggested to me for Carol I heard that to be eligible the individual had to be diagnosed as having some six months to live.

Thus the thought that I should be thinking about arrangement.

My neighbor said she would put me in touch with the funeral director she had worked with.  I said fine.

I didn’t follow up, nor did she get back in touch.  Perhaps she was waiting for me to take the initiative to proceed with preliminary discussions.

It was wise of her to wait on me because I was not ready so to do not only because of my  obvious emotional resistance to the idea, but because despite Carol’s cognitive issues she was quite obviously in good shape physically, a fact routinely confirmed by the medical professionals who on occasion saw her.

That is all background to Clare’s bringing up the idea.  She made it clear, however, that I was not to concern myself about that six month mortality requirement.  I now know that Medicare requires an assessment of eligibility in order to pay for the services hospice provides.  Exactly what the basis for eligibility is remains a mystery to me, but it certainly does not involve a six month prognosis.  Once eligibility is established it is reviewed periodically.

In any event, having understood that my old understanding was wrong, and  because Clare emphasized the services that would be available to us at no cost I agreed to at least explore the idea and Clare said she would set up an evaluation session to determine if Carol was, in fact, eligible.

Hanna, a nurse from Heartland Hospice came the day after I called.  She did the usual check of vitals, talked with Carol, I imagine to get an idea of cognitive functioning, saw that Carol’s right arm was held stiffly to her side and resists having it moved, which makes dressing and undressing a bit of an issue, none of that coming as a surprise to me, of course.

Hanna had me,trace as best I could remember the onset and progress of the disease.  She inquired about what help I was now getting.   She then announced that Carol was eligible for hospice, verified that I wanted to enroll her in it, which I did, as I now understood that hospice is a kind of Medicare funded insurance program.

Got this difficult topic started.  Will continue next time with the nuts and bolts.

Sunday night, the end of the four- day Thanksgiving weekend.  Watched less television tonight because Poldark’s season ended last week.

The most important service hospice offers is that Hanna will visit once a week.    I am  happy to have regular visits from a medical professional.  I checked with Chronic Care, Clare’s practice that has been supervising Carol’s medical condition, to ask about coordination with hospice.   It seems hospice is now in charge but that Chronic Care will check in every three months to verify that Carol remains eligible.

Although I do not now know, nor care particularly to find out what criteria made Carol eligible, I cannot imagine why she would lose that eligibility.

Some miracle improvement perhaps?

One should not try to find rational answers to the rules established by insurance companies, private or governmental.  Just go with them.

Besides Hanna’s regular visits, hospice will also send someone to the house whenever a situation warrants an immediate intervention, and that too is a comfort.

Hanna is a case manager, so all issues and services flow through her.  Medicare, through hospice, pays for Carol’s meds, and Hanna will need to stay on top of keeping me supplied since they are dispensed in a fifteen day supply as opposed to the 90 day supply my employer based insurance provides.  She will also put in orders for  care items, such as hygienic items, or liquid thickener, that I have been buying but will now come to me cost free

Also available from hospice are relief aides.  Since all hospice services are paid for by Medicare, I could save considerable money by replacing my current relief aides with ones from hospice, but  I declined to do so because I am well satisfied with the ones who have been providing that service for me for quite some time, a year or more, and I did not want to go through the process of working with new individuals.

I did contemplate replacing one aide to save that expense, but Hanna informed me  that hospice aides only provide bed baths, which my current aides provide.  They would not give me the block of free time I need.

Whether or not there was any truth that shaped my original foreboding about hospice for Carol,  I am relieved and pleased to see that hospice has turned out to be so supportive without any of the negativity I had associated with it.

I had been handling this situation pretty much on my own.  I now feel that although the disease will continue to do what it does, a support team now has my back and will be there to help me deal with whatever difficulties will inevitably arise.




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New and Newer Normal

Friday night, wind howling outside, snow already on the ground.  But at least the phone has stopped ringing, Election Day having come and gone.  This is not the place to chew over the results, just glad it’s over.

Welcome distraction from  all the political noise came from  reading the reprint  of an article from the 2007 issue of The New York Review of Books. The article was a review of books about the founding of Jamestown.  The reviewer was Edmund Morgan, one of the main secondary sources for my dissertation and I was always immensely impressed not only by his scholarship but the clarity of his prose, a pleasure to read.  Reacquainting myself with him was like getting back in touch with an old and valued friend.

This morning as I stood next to Carol’s bed, she said in the most plaintive tones “Steve.”  At least my memory now some eighteen hours later tells me that was her tone.  I can recall her expression, but I hesitate to label it lest my emotions intervene, but I will say it looked troubled.  About what, of course, I have no idea.  I believe I had just said my usual good morning and perhaps started, as is my wont, to chatter about the breakfast menu she would soon be offered.

Hearing my name, in whatever tone of voice, accompanied by whatever facial expression, in whatever circumstance, however everyday or not, whatever the context , always provokes a strong but ambivalent response.

On one level, I am pleased my name is still in her memory.

On another, I have no way of knowing whether she associates that name with me as I stand next to her.

I tried to clarify that point.

For her.

And for me

“I’m right here,” I say.  “Steve is right here, as he always is.”

She does nor respond either verbally or with a change of her expression.

I go on chatting about the upcoming breakfast, the usual toast, breakfast sausage, juice, a fruit of some variety.

I suppose one day I will no longer hear her call my name.

I’m not going to dwell on that unpleasant eventuality.

Better to think about the weather.  Will I be snow blowing tomorrow morning?  I have no place I have to go this weekend, nor do I expect any visitors, so the weather is no great concern.  I’ll just listen to the wind and let it lull me into sleep.

Monday night.  Carol asleep.  The dog snoring.

Winter arrived over the weekend.  I woke up to a snow covered driveway Sunday morning.  Only a couple of inches so I didn’t think it would be much of an impediment for me to deal with on my way to the store for Carol’s muffin and my Times.

I was wrong.  Underneath the thin layer of snow was a coating of ice.  I could not get past the end of the driveway where it grades up toward the road.  At that point, the car just slid sideways.  I tried a number of times giving myself more of a running start each time until I managed to sit on the edge of the road.

On the edge.  Not on it.

It would be criminally stupid to back onto the road without stopping to make sure the way was clear.  As it turned out, it wasn’t.  Cars coming one at a time from north and south.   When finally the way was clear I tried to back onto the road.  But lacking traction I went nowhere.

There was nothing to it but to put the car back in the garage, fire up the recently repaired snowblower and roll it out onto the driveway.  It managed to take the snow off and just enough of the ice so that when next I reversed out of the driveway I could get up to the top of the driveway, pause, and then onto the road.

Which itself was covered in snow and ice.  The four and a half mile drive to the store and back took at least twice as long as usual, as I kept my speed down to between 35 and 40.

Which almost seemed a bit too fast.

But I was dealing with conflicting pressures.

I did not want to leave Carol much longer than usual.  But I also didn’t want to risk an accident.

Now, I’ve been dealing with these roads in this kind of weather for sixteen winters.  Ordinarily, I am confident and comfortable.

Not this time.

Because I could not permit myself to get stuck or worse. Carol was alone back in the house in bed.  She cannot get out of bed to the phone, nor would she be able to use that device if it were within her grasp.  I would not be able to call her, nor would she be able to summon help if she needed it.

As usual, I know I was not being rational in that my concern for Carol was exaggerated.  Short of my being rendered unconscious, I would be able to summon help for her.  Yet, I still found myself tense as I navigated the ups and downs and curves of the road.  I was especially alert to the occasional oncoming car who might not be as careful or as experienced as I and so a head on collision was not beyond possibility.

I pulled into the parking lot outside of the store, a little surprised that there were several other cars there, more than I would have expected on a bad weather day.  But this is northern Michigan where people are not easily deterred from going to where they want to be.  I bought Carol’s muffin, and the Times, exchanged pleasantries about the early winter with the clerk as I checked out and drove back still much more carefully than usual.

Not a bad thing.

And I was more than usually happy to get back home to ask Carol if she missed me.

I don’ remember what she said.

It doesn’t matter.

Tuesday night after a troubling day.  Carol continues dealing with accumulated phlegm, resulting in much coughing and a gurgling sound as though she were drowning.

It was worse yesterday, much worse.  At one point, I gave her a little water, thinking, hoping, that it would somehow do some good.  What it accomplished was to cause her to spew out a mixture of the water and the phlegm.

This was worrisome.  I didn’t know if something serious was going on.  I checked her blood oxygen, found it to be 98%, a very good reading, but I wanted more support so I called Chronic Care and spoke to a nurse.  She asked me the color of what was spewed.  Clear, like water, I said.  Any sign of fever.  No, I replied.  And then, since this was someone I had never spoken to before, questions about the history of this problem, which I recounted to her.

By this time, Carol seemed to have settled down somewhat.  Less coughing, little gurgling.

The nurse said she would look into seeing what else could, or should be done.  A little later,Chronic Care called to say Clare, the nurse practitioner who usually sees Carol, wanted to come tomorrow morning.

Pizza supper that evening with Ryan was almost as usual, except Carol had little appetite and dozed off without eating much.

The next morning at breakfast, she ate with better appetite.  Still some sounds coming from her that I did not like.

Clare arrived, checked blood pressure, listened to her lungs, announced they were clear, recommended I begin again to give her Claritin, which I had stopped administering a while ago when the problem seemed to have mostly disappeared.  Clare said it would be good to suction out the phlegm but that cannot be done in the home.

Then, she said, she wanted to have a serious talk.

About hospice, its advantages.

I listened and agreed to an evaluation.

But there is much more to be thought about and written about on that subject, so as it is beginning to get late, I’ll tackle it next time.

The new normal for winter driving and perhaps a newer still version upcoming.

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Thursday afternoon in the community library, where I have not been for some time.  As I turned onto the road leading to this building I passed on that corner the site for the new library, and there I saw that construction had started perhaps trying to get a head start before winter sets in.  That new facility will certainly be a boon to our community.  The library in its own space will be able to stretch itself with more shelving, a community room for speakers, and so forth.  On the down side, perhaps, will be the students at the new charter school now occupying this building will not be able to walk to the library as they now can, and that lost of immediate contact and familiarity with a library is not inconsiderable.

This morning Clare, the nurse practitioner who comes every three weeks or so,  checked Carol and found her  to be in fine physical shape, and she also remarked on Carol’s apparent cognitive improvement.

Which accords with my own observations as well as those of others who have seen Carol over the past weeks.

It seems, then, we have settled in to a period of relative stability.  As I am a creature of habit, although one who deals with unexpected changes, good or bad, with decent equanimity, I am content to ride this period out for as long as it lasts.

However, on the way out today, Clare asked me if I had plans for a trip to New York in the coming months.  She recalled my aborted intent to attend my grandson’s bar mitzvah last April, thinking that transporting Carol to the respite facility had turned out to be too expensive but now with her wheelchair, she could  more easily, less expensively, be transported in a van supplied with a lift.

Perhaps so.  But I explained that travel arrangements, and the costs thereof, were only part of the problem.  My continuing hesitation was emotional, and frankly I don’t know if I am ready for a week’s separation.

Which I know, on one level, would do me some good.

But on another, I imagine would be difficult.

Would I feel guilty that I was somehow neglecting my responsibilities?

I don’t think so because no doubt I would have taken care to be sure she would be well attended to in my absence.

Would I think nobody else could replace me?

A ridiculous thought.  Three times a week I leave her in the care of my relief aides.  True, those times are for only a few hours.   Yet, all three aides do a fine job. In that respect, I am eminently replaceable.

But, and this is important, those hours do not include potent emotional periods of going to sleep, rousing in the morning, and in a counter intuitive way, that period of sleep when I lie within a couple of feet of her, when I have held her hand before stretching myself out, and taken her hand upon rising and greeting her in the morning, when during the night I have heard her breathing, or moving about in the bed.

Irrational concerns?

Yes, but who ever said irrational concerns were irrelevant?

Maybe I need to take such a trip once and see how well I and she do.  If successful, it can be replicated.

I do need to find out.

But dealing with the impending winter comes first.

Come spring, we will see.

The library is very quiet.  I might be the only patron now here.  Time to pack up and head home.  As I start to close my laptop into its case, I look up and see kids, maybe eight or  ten years old, lined up under the supervision of a teacher about to march out of the library and back to their classroom.  For all the advantages the new library building will offer, I will miss seeing these young people, their presence surrounded by books somehow suggesting hope for the future.

Monday night before election day.  Political robo calls kept my phone ringing with  increasing frequency all weekend and into today, the last call arriving well after supper.  As usual my caller ID alerted me to these calls and so I didn’t bother getting up to answer them.  But I noticed that my voice mail was not picking up the calls, and then I remembered the scheduled power outage starting after midnight and into Saturday morning.  When the power came back, my answering machine had defaulted to its off position.  I switched it back on just in time to catch another call.

That power outage somehow also seemed to have fried the motherboard in my new desktop.  At least that is what the Dell tech diagnosed as the reason the unit would not power up.  A Dell technician will install a new motherboard on Wednesday, so I’ve been told.

The falling leaves have opened up my view of the  East Bay again, a sliver of water more gray than blue now visible.  Some trees haven’t defoliated yet, so the view will get better in the next week or two.

Which also means that shortly I will be looking out over a blanket of snow as winter is knocking at the door.

It is something over a year since I started keeping this journal and posting weekly blogs from it.  I began it for several reasons including sharing my experience both with others in my situation as  caregiver, but also all those who are aware of, but have no direct experience with, the growing number of older people sliding into dementia.  From  more personal motivation, I need to be writing on something, and this serves that purpose.  And finally, as a writer, I always consider publication, and so this material might become a book down the road.

A less obvious consequence of my regular writing about our situation is that it forces me to think about it rather than just react to it.  I believe that is a valuable byproduct.  Caregiving responsibilities can be exhausting.

But they can also become through repetition rather mindless.

And that is not a good thing.

Not for the recipient of the care, nor the provider of it.

On that reflective note, which had never occurred to me before it just popped into my head I will close this session with one last thought.

As a writing instructor for many years, I always encouraged students to think of  writing as recursive.  Reading what one has just written often enough leads to another idea, one that would not have occurred to the writer had he or she not been writing.

It is good to understand that as a writer.

But also as a tool for the caregiver.

More than writing about our everyday activities, or even the problematical situations that arise and must be handled, when I sit down at my laptop I open a door into my mind, and perhaps most importantly, my feelings.  It makes me more self-reflective than I usually am.

And that, too, is a good thing.  That is what in hindsight I see is precisely what I was doing in the first section of this post, delving into how I felt, and feel, about taking time off from my caregiving responsibilities.

My wonderfully gifted wife placed a quote attributed to E.M. Forster beneath her email signature.  It is an apt closing quote: “How will I know what I think until I see what I say [write]?

Writing as an act of discovery, as a way to open the door to thoughts and feelings.

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