Sunshine and Clouds

Monday evening after supper.  Carol sleeping in her chair and I will shortly move her into her bed.  Just want to get started because I’ve not been able to find time and ambition over the weekend.

About a week or so ago, when Ryan had joined us for dinner and was still here as I was transferring Carol from the wheelchair to her bed, he witnessed something startling.

I was talking Carol through the steps of the transfer process as I always do.  When I reached the part where I say that with my help she will stand up and dance over to the bed,  at that point as I started to put my arms around her, but before I began an upward motion, on her own she lifted herself up off the seat of the chair.

And began, albeit unsteadily and uncertainly, to stand.

Let’s be clear.  Without a doubt she would not have stood all the way up without my usual help.

But she had remembered the routine.  She had responded to the verbal prompt.

The next morning, the nurse practitioner was here and witnessed the same thing.  She was shocked.

In a good way.

And so, I ask myself has Carol created a new memory?

If so, how significant is that?

OK.  Got it started.

Tuesday night.  Just glanced through a document from my elder attorney which detailed the loose ends that have to be tied up for the trust to be prepared for all contingencies.  I confess my earlier interest in the legalism of this business has evaporated and I did not focus as well as I should have.  I understand that guarding against unfortunate contingencies is necessary even if my eyes start to glaze as I read about them

Continuing my exploration of the possibility that Carol has formed a new memory.

Perhaps that is not accurate.  I could see what I can find out on this subject by doing the appropriate neurological research.

But I won’t.

In the first place, although I know well enough how to do research, I never enjoyed doing it all that much.

Second, I anticipate that the research would not yield a clear consensus since so much about this disease is not yet understood.

So, I prefer to observe and think about what I see.

What is clear is that in starting to stand during our transfer process Carol is responding to a verbal prompt.  If I don’t say anything, nothing happens.

I have not tried that verbal prompt in other situations.  I don’t want to muddy those waters.  I believe that if there is a new memory, it has a fragile hold in Carol’s brain.  After those first few successful responses, on other occasions she needed more encouragement from me to begin to stand.

Another complication has also to be factored in.  I sense a war going on in Carol’s head between her primal fear of falling that still causes her to push back instead of forward and up, and her occasional executive function overcoming that fear.  This conflict is most obvious at the beginning of the transfer process when either from the chair or the bed, I move her into a sitting position as a prelude to getting her on her feet.  Sometimes this step goes smoothly, but other times she pushes back hard.  If I resist that backward movement for a little while and verbally coax her into relaxing, she generally does. Once relaxed, I am guessing that her executive function has asserted itself.

If not that, I don’t know what.

The larger point, however, the bigger question, is whether or not her brain even so compromised by this disease has any recuperative possibilities.

Does she, in fact, as I asked at the beginning, retain the ability to make new memories?

Maybe a new memory is not right.

Perhaps her brain is somehow recapturing old information still stored there.

In either case, though, she is doing something she had not been doing for a long time.  That in itself is remarkable.

And cause for a little good feeling.  I am not foolish enough to expect much more, certainly not any additional improvement.

And as always with this disease, even good news such as this is also a stark reminder of how far down this road, from which there is no real turning back, we have traveled.

In the community library Thursday afternoon.  Unusually active, as librarian seems to be introducing a woman and her children to the layout of books on the shelves.  Perhaps the family has recently enrolled the kids into the charter school, opening in a couple of weeks, that is replacing the public school in this building.

Pure speculation on my part.  But I am a fiction writer, an observer of people, and I do this kind of thinking automatically.  And if I choose to write a story about this family, my speculation can be the basis, the skeleton I will have to clothe and provide inner lives to.

I have completed setting up my trust although certain chores remain to finish its implementation, such as designating additional beneficiaries for an insurance policy that lists only me now, and for our joint checking account as well.  The trustees will need access to these accounts.

I will take a deep breath before proceeding with those chores.

All of this business turns my mind inevitably toward my own end of life.  When my father died some twenty-five or so years ago, I became the last survivor of my nuclear family.  An image occurred to me at about that time.  I am riding up an escalator with nobody in front of me.  I suppose in my imaginings this was my family’s private escalator, and ahead of me, having already reached the top and then disappeared ,were my mother, sister, and father.

In that order.

They rode up and then they were gone.

For some reason, I do not look back to see who might be coming up behind me.  Perhaps I am being self-absorbed.

Or don’t want to say good-bye.

But for better or worse, my focus is straight ahead toward that top over which at some point I will go.

And then disappear.

Enough of that kind of dark thoughts this sunny afternoon as my respite period nears its end.

As I start to pack up my laptop, a young boy, one of those who had been introduced to the library, sits down at an adjoining table and looks disapprovingly in my direction, perhaps unhappy with the noise of my opening the case into which I will put my laptop.  He has a pile of books on his table.  For a few moments, standing in front of him is an older woman, who probably is not related, but just another patron.  Still, observing these old and young users of this library provides a kind of antidote to gloomy speculations.

Saturday night.  Not really going to start a writing session.  Just want to record one incident that fits my exploration of the workings or non-workings of Carol’s brain.  So here it is.

This afternoon in keeping with my recent commitment to exercise on the treadmill three days a week, one of which would be Saturday, I changed from my sandals into my walking shoes.  Carol was in her bed.  I leaned over her to tell her that I was going downstairs to the treadmill.

Then I said, “Now, you just stay here.”  I often say that as a kind of way to thumb our noses at the nasty fates that have made that statement ridiculous.  This time I added, “And don’t party like you usually do when I’m gone.”

Her face opened into a wide smile.

And she laughed.

Not a big belly laugh, but a very discernible laugh.

She was with me in that moment, completely, and as fully as she used to be.

I don’t know if I had a lilt to my step, but my upcoming exercise surely seemed less a chore, if not quite a celebration.

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3 Responses to Sunshine and Clouds

  1. Kathleen.flores says:

    It,s so nice that carol , sometimes seems to know you are with her, and reacts with a smile or a laugh. I wonder what people feel who are in a home , and around strangers . I hate this disease. I can,t believe she has this at such a young age. My girlfriends husband had this. We visited him in a home. I remember his eyes were always focused on her, but he couldn,t sit up. He was able to talk to her a little bit, and seemed to know who she was. He never looked at me, just her, and her pug dog. But it was sad, because when we left, he just played there, alone. Hate this disease.

  2. Wendy Warren says:

    Steve, this post made me smile. It’s those tiny, unexpected connections that will get you through. Enjoy them and the lilts they provide.

  3. trudy carpenter says:

    Yes, I smiled, too, at the specks of joy.

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