A Useful Fiction and Real Progress

Friday afternoon, In the main branch of the library, looking out of the window at the Boardman Lake, out of which flows the Boardman River, which, in turn, empties into Grand Traverse Bay a mile or two from here.  I can see the old railroad tracks on a  swath of green.  Beyond that is a small parking area bordering the lake.

Altogether a charming view.  I cannot imagine a better spot on which to plant a library, redolent of history and natural beauty.

I am getting more practiced transferring Carol from bed to chair and back.  She accepts these movements without too much opposition although she still exhibits moments of panic as she is between the two.

When I came home from my shopping on Tuesday, the aide told me that she had great difficulty effecting this transfer and that it took her and the trainee who was with her that day to get the job done.  That tells me that Carol was offering significant resistance because this aide is both physically and professionally competent.  She is the one who gives Carol her weekly bed bath.  In fact, she was teaching the trainee how to execute that task.

Perhaps it was all more than Carol was in the mood to accept.  And in spite of her dementia, Carol’s base personality remains very much in evidence, and that base has an ample store of toughness and independence.

The bad taste from that afternoon seemed to have spilled over to Kyle’s session the next day when even his best banter and blandishment could not elicit much cooperation.  He came with the ambitious expectation to move to the next step, which was to work with Carol so that she would handle a stand and sit transfer, whereby she would get off the bed into a standing position, turn ninety degrees and sit down into the chair.

He could not get Carol into a sitting position, which would be the precursor to getting her feet over the side of the bed.

She was having none of it.

Kyle did not push the issue.  That is one of his finest attributes as a therapist. He knows when to stop, something previous therapists did not seem to understand.  He said he did not want his voice associated with what seemed to be Carol’s memory from the day before.

So, he just stopped and said he would try again on his next visit.

My respite time is drawing to a close.  I will try to resume and round this off tonight or tomorrow.

Sunday night.  As per usual watched Masterpiece Mystery alone in the tv room.  The dog remained in the living room.

Kyle will be here tomorrow evening no doubt to try again to condition Carol into a stand and sit routine.

Whether or whenever he is successful, the presence of the chair has already had a positive effect.  For the most part, Carol and I are eating together at the table, either in the kitchen or the dining room.

Well, to be more accurate, we sit together, but for the most part I help Carol eat first, and then I turn to my own food.   But the point, as small as it might seem, is that I have been able to move past the mealtime fiction I have been observing particularly for supper when I set two plates on the dining room table.  Then, I have been bringing over the meal in service plates, and while sitting in Carol’s chair, fill up her plate with as much food as I think she will eat.  Having done that, I carry the plate over to her bed and serve her meal to her there.

For all these month, I have been doing supper this way, always setting the supper table for two.

But now when I do that, I bring Carol over in her new chair, and we do sit side by side at the table.

In the mornings, I had been eating my breakfast alone after taking Carol hers.  Now, we eat together at the table in the kitchen.

Lunch is still not settled.  Where Carol eats that meal depends upon how long she has been in the chair when lunch time arrives.  Sometimes, I may have decided it was time for her to be back in the bed.  And, in any event, she seems to have less interest in lunch.

Thus, these details, as trivial as they are against the backdrop of the larger picture, serve to lift my spirits.  On the one hand, I fully recognize that the course of her disease has not changed.  On the other, notwithstanding that fact,  they do manufacture another useful fiction that our lives sort of go on as before.

And those kinds of fictions are necessary.

Carol, on some level, seems to agree.

In the morning, I ask her if she wants to get into her chair and go to the kitchen for breakfast.

She says yes.  If she hasn’t articulated the word clearly, I ask again, and she repeat in a firmer voice.

The same holds for supper.

She tolerates my transfers into her chair with only minor upset.

Together, then, we both buy into this most useful fiction.

Tuesday morning.  Carol in her chair, dozing after breakfast.  I am snatching a little writing time before the aide comes and I go to town for weekly shopping.  Want to set down two tracks to develop: progress Kyle is making, and entirely unrelated thoughts prompted by Saturday’s Kentucky Derby.  The two are joined only by time, but I don’t want either to slip away.

After a non-productive session last Wednesday, Kyle arrived yesterday with his usual optimism and forward looking attitude. His plan, I thought at the time, was audacious, a big step from the slow, cautious approach he had been pursuing.  I’m guessing, since we didn’t talk about his thinking, that he saw last week’s problem as an aberration, a bump on the road, and he had determined to erase any trace of it by moving boldly forward.

He had decided to see if he could get Carol to stand.

Perhaps because I had been successfully managing the transfer process into and out of the chair for the last five days, by carrying her, or because the dosage of Busbar had been increased a little, or some combination, Carol offered less resistance to his initial efforts to have her sit up next to him on the bed.

From that position, he tried to lift her into standing.  That didn’t go well, so he switched to another strategy.  He transferred her to the chair.  Doing so placed her immediately into a solid sitting position.  He placed a walker in front of the chair, and tried to get her to grasp its handles.  He didn’t have much luck with that maneuver, so again he switched to another approach.

He removed the walker, stood in front of her, and then several times he lifted her onto her feet.  Later, he reported that although he was largely supporting her in these instances, to a certain extent she was putting weight on her feet.

A start toward her standing.

Perhaps with the support of the walker, or even on her own.

As  a kind of reward, he wheeled her out the back door onto the deck to enjoy the early spring weather.

Somehow, he had observed in the rear of the garage a piece of wood that had been part of a platform bed I constructed many years ago.  The piece had a flat surface and on one end a right angle lip of two or three inches so that when laid on the ground it formed a kind of ramp.

I no longer remember how it fit on the bed. But it turned out to be just about the right size to provide the ramp he had previously envisioned as being helpful in easing the wheelchair over the door sill and onto the deck.

He marked the piece to indicate its proper width,and indicated he would find a saw to cut it.  I told him I could manage that, and took the piece back into the garage where my ancient radial arm saw was available for the job.

It did most of the cut.  But the lip raised it too high so that the bottom of the motor prevented the cut from being finished.  I dug out my circular saw, finished the cut, and brought the piece back out to Kyle.  He placed it against the outside of the doorway and nodded his satisfaction.

A little later, when we had sat outside for a while, he tested this makeshift ramp and judged it adequate.  It is difficult to assess how much Carol processed what was going on.

But she did seem to enjoy the sun on her face.

We brought her back in, and I kept her in the chair, for Ryan was due shortly for his weekly visit.  Kyle left, Ryan arrived, we chatted, and then I drove to town to pick up Chinese take-out.  Carol ate with decent if not great appetite.

A most successful several hours.

It did not halt the progress of the disease.

But for the while it drove it back into the dark corner out of which it had risen.

I haven’t forgotten that I want to deal with thoughts raised by the Kentucky Derby. Will get to it next.


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