To Hoist or Not to Hoist and Carol’s Journals

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

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

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

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

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

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

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

Tired. Enough for tonight.  Resume tomorrow.

In the library this afternoon after snow shower this morning.

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

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

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

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

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

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

And the tv room where we could watch television together.

Sort of.

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ADD.

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

But we didn’t always agree with those assessments.

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

I had to add that qualifier nearly.

But the point remains.

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

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

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

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

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

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

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

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

That had some appeal for me.

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

Then where would that go?

I found myself losing myself in these very mundane considerations.

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

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

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

No doubt professional movers could work something out.

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

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

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

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

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

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

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

For Carol.

For me.

At this time.

 

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5 Responses to To Hoist or Not to Hoist and Carol’s Journals

  1. Kathleen flores says:

    I liked tour comment. Everyday was valentine,s day. Awwww

  2. Trudy says:

    Your focus on chairs intrigued me and made me think about how and why different chairs represent different phases of our lives.

    I also think your hoyer decision was good.

  3. Peter Melnick says:

    Re therapists recommending a hoist: How interesting and difficult it is to be sure of other people’s motives — no less our own! Carry on, Steve.

  4. Sheila Fox says:

    Given the difficulties of the hoist as well as your understanding of Carol’s fear of falling, your decision to avoid the hoist makes perfect sense to me. —— Also, I could not help but speculate about why no one has invented a smallish kind of bed (on wheels) that can be manipulated during the day into a chair-like position, which could then be moved around from room to room. Then a hoist would not be needed. Does this make sense? Am I missing something? —— I am in awe of your strength and devotion.

  5. Wendy Warren says:

    So many decisions! I commend you for doing what is right for Carol…and you. As a side note, the Hoyer was scary for Gary and not really very easy to use.

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