Monday night. Carol asleep on the sofa. Dog in her bed.
Our daughter will be here Wednesday evening for a few days right before Christmas although she can’t stay for the holiday, having to drive back in time to return to her job. I have tried to prepare her for what she will encounter, but there really is no way to do that.
Carol is oblivious to the holiday season, but she is sure that she has cancer. I cannot disabuse her of this notion.
That is not surprising. It is impossible to prove a negative. Even if she were thoroughly tested now, another mammogram, colonoscopy, administer any and all cancer screening tests and have all of them come back negative. That would not persuade someone who did not want to be persuaded.
So, the question is why does Carol want to believe she has cancer.
And I think I might have figured out an answer.
She must know on some level she is not right, by which I mean, not her former self. Of course, that is abundantly clear to even the most casual observer. But that fact perhaps has also made its way through her cognitive impairment.
She sees other people, primarily me and the caregiver relief aides, doing things she cannot any longer do. That much is a fact. And maybe even in some inchoate form a memory stirs in her head that once upon a time she did the same things, stood up by herself, fed herself, walked about the house.
That is the beginning of my hypothesis as to why she is so insistent in believing that she has cancer.
The next step in my developing guess is that she is angry.
Not all the time. Her mood is, in fact, generally, accepting of her condition.
But underneath that placid surface there might be seething anger. I’ve seen that anger erupt in profane expressions, usually when she is drowsing. Sometimes when she is full asleep, she will start up and curse a presence her brain has manufactured.
So there is anger directed at a particular stimulus, one created by her mind. But perhaps there is also a discontent to which she cannot put a name, but which nonetheless nags at her sense of well-being to the point that she must respond to it.
So cancer jumps to mind. It is convenient. She did have cancer. And was never the same after the treatment that got rid of it.
I’ll go a step further. It is possible that she sees the cause/effect that is so clear to me. The cause of cancer, the effect of dementia.
At first glance, that causal relationship seems false. Of course, the cancer did not cause her dementia.
But the chemo no doubt accelerated it to a significant degree.
Carol is not making such a nuanced distinction.
She was high functioning before the cancer.
She is barely functional now.
She is angry and needs a target.
Cancer it is.
Christmas eve and all is very, very quiet, Carol still up, the dog not yet in her bed, and I in my usual late night chair. For some reason, I have found a station streaming unobtrusive classical music and I am listening with ear buds plugged into my laptop. I have always been an avid listener of music, often when I am working on the computer. I recall that when I was writing my dissertation decades ago, I had a radio on my desk tuned to WPAT, which played easy listening music.
This holiday season is happening as though on another planet. I did not send out cards, in itself not so unusual as many people have abandoned that practice, switching to social media instead. We received a few cards, and I did bring up our miniature artificial tree with its string of blue lights. That, of course, was for Carol’s benefit, as left to my own devices I would have left it in the basement. It is a relic from another time, a reminder of when we would be immersed into Carol’s family’s celebration, everyone gathering in her parents’ house on Christmas day. Carol shared her family’s enthusiasm for the holiday, and so when our daughter was young in New York, we would have a full sized tree, sometime real, sometimes artificial, and once we moved here I strung lights on this house.
Carol’s family no longer gathers, as each nuclear family now goes its own way, a kind of natural evolution, I suppose.
But they are all celebrating.
We are not.
I told Carol a little while ago that it is Christmas eve. She did not offer much of a response.
Our daughter is now half way back to Minnesota after a three day visit. She will be completing her journey on Christmas day.
For Carol and me, tomorrow will unfold as does every other day.
Putting all this together produces an eerie feeling of being on an isolated island in the midst of an ocean of unrestrained exuberance.
It is not terrible, just strange.
I can’t decide how I feel about this.
I regret that Carol no longer can enjoy that celebratory holiday energy. But I don’t really miss it. I was never fully part of it anyway.
Still, the feeling of being isolated, of dealing with Carol’s dementia primarily by myself, is amplified by our detachment from the holiday festivities.
A week from now New Year’s Eve will replicate this experience, perhaps with even more emphasis.
It was lovely having our daughter here for her brief visit. For those days, which included a dinner out with Carol’s brother, wife, and Carol’s sister, with the nephew staying with Carol, there was a whiff of normalcy.
Now that is gone, up the chimney down which will come no chubby little elf.
Late night after a fierce winter day, lots of snow, wind chills below zero, white outs that obscure the roads. I cleared the driveway to provide room for Tuesday’s aide, but then watched the snow continue. Luckily, neighbor Rocco came by with his rider snow blower and a few more passes with that machine got the driveway clear again. Took my time going to town for groceries.
Yesterday’s Christmas day was absolutely quiet. The phone did not ring once, and that simply does not happen during this time of constant barrage of telemarketers and robo callers pitching Medicare Advantage plans.
I wished Carol a merry Christmas. She kind of smiled, but I am not sure what to make of the response. I’ve pointed out our little fake Christmas tree, and told her which cards had come. In that regard, she responds to the names, it seems, much more fully than the holiday itself. Today, a card came from Etta, one of her very old friends from the time she was working in New York. Etta’s name registered strongly, and elicited a clear and loud repetition. I seem to remember that I took dictation from Carol for a letter to Etta some time ago when Carol’s head was still good but her handwriting had failed her.
Another card came from Jeff, my office mate for my last years teaching. Carol also responded to his name, but actually more to my recalling that Jeff’s wife Sue is a judge. From time to time, Carol still reminds me that she is a lawyer.
After that long quiet Christmas day I was in a funny mood, one that is hard to describe. I wasn’t down, nor was I up. But I surely lacked any ambition or inspiration to do anything, which is unusual for me. From ten o’clock on, most evenings, my energy revs up, and I find something to do, write, read, watch the news or a sport event if one of my teams happens to be on.
But not last night. I sat in the tv room looking for something to watch. It was way too early for me to consider sleep. Carol called me in as she sometimes does after she has gone to sleep herself. This time, she appeared to be upset about something, but she could not tell me what.
I sat with her, holding her hands for a good while until she settled back to sleep. Occasions like that encourage me to continue with our present arrangements.
I still was neither sleepy nor motivated to do anything.
I opted for mindless entertainment and watched the latest Jason Bourne movie.
It was peculiarly satisfying to let Hollywood take hold of my mind and chase everything else away.
A fitting end to our non-celebratory holiday, the sensory overload emanating from the tv screen, the obliterating white from the snow storm outside, both in their very different ways providing analgesic relief, a couple of hours during which I thought about nothing.
These days nothing is sometimes better than the somethings I have to think about.