Near midnight on Sunday. Watched a two hour season premiere of PBS’s Victoria alone, although the dog slept through the show, lying, as she usually does, on the floor in the tv room.
I did think of inviting Carol to join me, as we always watched Masterpiece Theater together on Sunday nights. And she had a particular interest in Queen Victoria. One of the last books we got for her was the new, massive biography of the queen. When it was clear, however, that she could no longer process words on the page I read the book aloud to her until her attention flagged and she lost interest.
So the combination of our past habit of watching this show together and her interest in Victoria, made me consider asking her to join me. A little reflection, though, convinced me to not even try. Getting her into the room would have been a formidable task, and then, even more important, I remembered that she could no longer focus on the audio and visual stimuli offered by the television.
This morning upon waking, Carol asked, “Steve, are you here?”
That brought a silly smile to my face. I was convinced she was aware that she was directing her question to the present me, not the remembered me.
I’m not sure why I was so sure. It was probably something in the tone of her voice. It had a certainty to it as though she was fairly certain that I was nearby, the actual physical me, and not the shadowy me of memory.
This incident fits a recent pattern. For the while, her condition seems to have stabilized, including occasions of what appear to be a stronger connection to the present moment.
These moments remain scattered and outnumbered, to be sure, by the times when her mind seems elsewhere In fact, today she was having persistent conversations with person or persons unknown. These appeared to be delightful interactions, accompanied by laughter
But they clearly had nothing to do with me. Or the dog.
And herein is the horrible dilemma provided by this disease. The teasing, tantalizing moments that trap me into responding as though they indicate some kind of return to normalcy.
They do not so indicate.
I know that.
But I let myself be fooled each time anyway.
Again, late, and I’m tired. This Monday was Martin Luther King day. No mail, few calls. I spent a fair amount of time setting up appointments for matters I have been ignoring, such as to the periodontist, or to the elder attorney with whom I want to explore the possibilities of Medicaid for Carol.
I’ll scratch out what I can, continuing where I left off.
A day later and Carol woke up with an intensified fear of falling. I had to reassure her verbally several times, and then when those measures failed, I positioned myself lying down on the sofa so as to be able to hold her hand or stroke her cheek to reassure her that she was perfectly safe.
When this fear persisted even after breakfast, I realized I had not yet administered her morning meds. Perhaps that had something to do with the continuing problem. In any event, after a while she seemed to settle down without the fear.
This is the up and down that people talk about, the good day/bad day syndrome. I honestly don’t know if the good days are worth the inevitable bad that follows. And to talk about days is a misnomer. The changes are not that regular, predictable, or evenly spaced out.
After this rough start, the day then moved to a kind of ordinary pattern during which I offered, and she accepted, BLTs for lunch. She didn’t sleep as much during the afternoon as she usually does, and then ate a good supper of salmon, rice, and yellow squash.
Later in the evening, I asked her if she wanted me to read one of her stories to her. I had put two journals containing her work on the table next to the sofa so that the aides could read to her. One had tried, but told me that Carol had no interest. Nonetheless, I asked her tonight if she would like to hear her story, and she assented.
I read “Wings to Follow,” all of it, and she listened attentively, smiling at lines she apparently remembered. I’m not sure when, or even if, I ever read the story, at least in its finished form. Reading it tonight reminded me, if I needed reminding, how good a writer Carol was. Simply put, this is a hell of a story. Two Native American sisters, one runs a bar, the other is planning to travel, somehow, to the Upper Peninsula of Michigan to their mother’s village.
It’s all done so well, the simple plot, the relationship between the sisters, the characterizations, particularly of the older, bar-keeping sister, the language, and the ending. I am a student of endings because they are so hard to get right, and feel so good when they are, but so often do I see ones that simply do not satisfy. This story ends on a perfectly pitched note.
I am offering all of this, not as Carol’s husband but wearing my writer/professor’s hat.
A curious coincidence needs to be mentioned as well. At one point, the older sister mocks an arrogant teenager wielding a knife, and uses the word “mumblety-peg.”
The title of my just published story.
Which I am reasonably sure Carol never read because I wrote it before I met her.
If I believed in some mystical forces, this would be proof.
As she was getting ready for sleep, she said she was glad to have me.
That’s as good as it is going to get.
I know that.
And it will not last
I know that as well.
But maybe the lesson here is simply to live in the moment, knowing that it offers no guidance to the next moment. That recognition, if I can hold onto it, will be a huge help
After lunch the next day. I read a few more pages of Love Medicine, a section describing Grandfather’s dementia which in some ways could be applied to Carol. He has little memory, and what memory he has is long term so he confuses the past with his present. There is one persuasive difference, however, between Erdrich’s imagined picture of dementia and Carol’s actual condition. Erdrich says Grandfather’s loss of memory is a gain in that it enables him to forget things from his life he’d rather not remember. Carol, however, draws from the reservoir of her long term memory things she likes to recall, such as that she was a lawyer. In fact, she doesn’t use the past tense, she says she is a lawyer, and tonight she was talking about having to work.
For the past couple of days, we seem to have returned to a version of the two Steves. This time it’s a little more subtle or nuanced.
First it comes on the heels of a few occasions when Carol seemed very much in the present moment, such as when I was reading to her. During these occasions, I could easily permit myself to enjoy what is essentially a fiction or an illusion, that for those few minutes she was herself, and in being herself, she was fully aware of who I was.
But when I came home from an appointment in town yesterday, the aide said that Carol had been asking for me the whole time I was gone. And then last night, and again after breakfast this morning, she called my name literally every few minutes. I would respond, ask her what she wanted or needed.
She didn’t say.
I would return to whatever I was doing, reading the paper or doing something on the computer, and again and again, every few minutes, she would call out for Steve. I stopped what I was doing, and went to sit next to her, take her hand, try to see what was going on in her head. When again she asked for Steve, I told her I was right there.
She seemed to accept that I was Steve. But I could not shake the idea that even though she acknowledged I was Steve, even though she indicated she understood that not only was I Steve, I was also the husband she was asking for, that in spite of these confirmations of who I was, she was still looking for some other Steve.
She would accept the present reality of me as Steve.
But in some way she was still conjuring up, and hoping to see, the Steve locked in her memory.
Her birthday is next week. I will get her roses. She will even in her confused state enjoy them.
But I am not sure she will know which Steve gave them to her.
I just have to live with that.