Saturday late afternoon on a warm and muggy day in mid July. The weather has been hotter than I recall it being during the fifteen previous summers we’ve lived here. Rocco is across the road spraying loosener on his trees preparing them to be harvested by shaking. Carol was the first woman shaker driver on the Peninsula.
She is sleeping now, and I have some time before preparing supper.
Music playing from Interlochen, and I find that I am wearing an ancient T shirt, on the front of which is the image of a grand piano and some bars of music, and on the back the word “Dad.” Clearly, the shirt was a gift from one of my daughters, but I no longer can recall which. I had forgotten I had the shirt until this morning when I found it on the bottom of the pile of possibilities in my drawer. It feels a little tight, so perhaps I was a bit thinner when I received it. Or it was not correctly sized by the buyer. Or it shrank. None of which helps identify the giver. But what is clear, the choice of the images reinforces the centrality of music in my life.
Which leads to a thought I’ve been playing with for the past few weeks. Some time ago, Kyle said something to the effect that he would love to know what was going on in Carol’s mind. Of course, on a basic level, none of us ever fully knows the workings of another person’s mind. We guess based on all kinds of factors, and in the best relationships we probably come pretty close to getting what our mate is thinking. In those relationships, we soon enough find out if we were right or wrong.
But Carol’s dementia provides a whole different, much more impenetrable barrier, made even more so by her loss, for the most part, of the ability to articulate her words. She still can provide one word responses, mostly of the yes or no variety, and even the occasional full sentence, as one of the aides reported her saying “I like watermelon,” when being offered that as part of her lunch.
To further complicate matters, as Kyle also explored, it is not possible to know what exactly she sees. I have known for quite some time that the communication between her eyes and her brain has been compromised by the disease. That is why she can no longer read. And why when on the occasions I have her with me in the television room, she listens, but does not look at the screen.
Yet, she still does seem to be looking at things, such as at my face when I lean over her. Waving a hand, as Kyle once did, in front of her eyes produces a defensive closing of them. So, I can conclude that the images sent to her brain by her eyes do stimulate a response, but the nature of that response is not at all clear.
Perhaps some sort of sophisticated neurological testing could provide an answer.
Or maybe not.
These thoughts are just the beginning of an exploration of what is going on in Carol’s mind.
Moving away from the visual to the auditory reveals a clear difference. She does process auditory cues, be they in the form of words, or music. In terms of the former, she does respond not only to remarks or questions aimed directly at her, but also to what she might hear from others’ conversation or even the words floating out into the room from the television or radio. I am also sure by observing her facial expressions, and occasional movements of her hands, that she responds to music.
And still I am only scratching the surface of the question. Deeper questions remain. Kyle has talked about, for example, her loss of the executive function of her brain, so that more primitive impulses are no longer constrained and emerge to create their own responses. Her fear of falling might arise from that situation. The loss of memory in dementia is clearly another obvious factor. But what replaces those lost memories? Is each day a new experience, and if not, to what extent is it not?
In raising these questions, we are trying to get inside the dementia.
Which, no doubt, is impossible.
I’ve taken this as far as I can for now. Perhaps I’ll dig further.
Or perhaps not. It is a scary place to be.
Monday night. Carol snoring, dog sleeping. Just watched Netflix documentary Evil Genius about a most bizarre murder/bank heist case involving a pizza delivery man with a pipe bomb fastened around his next as the unwilling bank robber in one plot line, and a murdered man found in a freezer on another. Somehow the two plots will meet and all will be revealed. Too weird to be instructive of anything but distractedly interesting.
And a little distraction is a good thing. I take it where I can find it.
As I often do, I just want to start what follows, enough so I will be able to let it percolate a little bit more, and then wade into it.
In my attempts to understand Carol’s dementia, to imagine what it must be like from inside her head, I have been thinking the word“fog” describes her mental state.
But it occurs to me that might be wrong, and therefore misleading.
A fog suggests an environment lacking clarity, where things cannot be seen easily, or perceived at all, if the fog is thick enough. And because Carol often does seem somehow to lack understanding of where she is, the word at first glance seems apt.
But I have been observing indicators that suggest otherwise. It’s not so much an inability to perceive her present circumstances, but rather that her mind is elsewhere. And that elsewhere might be perfectly clear to her.
For example, sometimes when I am offering her food to her, she seems unaware that eating is her immediate activity. I then say her name with some emphasis, and she starts as though she is being brought back to the present moment, and takes a bite of the piece of toast I have been holding in front of her mouth.
A start. Wading into deep waters. Don’t want to drown.
Wednesday afternoon. A very noisy and somewhat busy day. Outside, a constant stream of farming related vehicles, fork lifts, tractors, and various sized trucks, all part of the ongoing cherry harvest In addition there are the tourist vehicles in an unending procession north to the lighthouse, and south back to town, as well as the mostly quiet packs of cyclists, whose riders’ voices sometimes carry into the house as they zip by—all of it almost making me impatient for the quiet of winter when the only vehicles are the snowplows roaring by knocking down the occasional mailbox
The phone, too, has been ringing all day, telemarketers and political robo calls as we approach primary day. Among these I finally received one of those scam calls I’ve read about, an automated voice in the most somber tones instructing me that it is from the IRS, which has issued an arrest warrant for me, and I’d better call the specified number. Immediately, or be ready to be fitted for an orange perp suit. I don’t know whether I should be amused that I have reached the age where I am deemed a target for such a transparent fraud, or insulted that it is thought I would fall for it. In that vein, I also received a call from somebody who claimed to have heard I was interested in getting my book published, and offered me some help in doing that. Having published fourteen books, I felt like calling this one back and suggesting he update his list.
Friday afternoon, and I am in the community library again for the first time in weeks. None of my lunch companions were available, so after dining alone, and with more time available, I came here to do a bit of writing. I first edited the blog that will post tonight—I’ll look at it one more time later—and now I’ll see if I can move on into my speculations about what it might be like being in Carol’s head.
The library is unusually active, perhaps because of the book sale in an adjoining area. There are a few patrons checking the shelves. A couple of voices in animated conversation float back here from the front desk. To my left, a businessman asks if it is ok with me if he makes a quick phone call. I assure him that he can.
I note that there may be a tactile component to Carol’s connection to the here and now.
For example, she seems to enjoy holding hands. She always did. Now, when I take her hand, she squeezes mine as she used to do, and does not let it go easily. If I offer her my other hand, she takes it and holds both with some pressure.
I do this most usually when she is lying flat on her back in bed, so I cannot think she holds on to my hands with such intensity because she is afraid of falling. When I release my hands from her grip, she remains comfortably lying there as she was before.
So, what is going on during this simple activity?
More noise coming from the front of the library. It is almost getting to be distracting, even for one such as myself so used to blocking out background noise. A toddler’s complaining voice rises above the din. In spite of the distraction, I am happy to see so much activity in the library.
Of course, I can only guess. Perhaps the feel of my hands in hers gives her some sort of comfort or security. I do not think, although I would like to, that she knows the hands holding hers are mine, that they belong to the Steve she seems sometimes to still associate with me, or her memory of me.
In a similar fashion, when I have her sitting on the edge of the bed preparatory to helping her stand so that I can guide her the couple of feet to her chair, she first grabs my shirt or pants. That action clearly arises out of fear of falling.
But then when I put my arms around her in a kind of an embrace so that I will be able to get her onto her feet, she rests her head on my chest. She is calm at that point, perfectly comfortable. It is hard to reject the idea that she knows she is in my arms as she had been so often for so many years.
I talk to her throughout this process.
But she does not vocalize anything with the exception of an objection to being turned around on the bed as I get ready to help her sit up.
So I am left guessing.
I conclude a couple of things, recognizing that all of this is the purest speculation, not a little colored by what I would like to think is going on.
First, although there might be a little element of fear of falling throughout I do not think it is significant.
Second, she seems to enjoy the physical intimacy, particularly of my arms around her.
Third, and most important, throughout this process, she seems to be in the moment.
Does she know who is helping her?
I can’t answer that.
Does she appear to be confused? In a fog?
When I ease her into her chair, and I am no longer touching her, then, she looks a little confused, as though trying to orient herself to where she is.
I can add one other factor.
The auditory one.
As I mentioned, I talk to her during this process. I first tell her we are about to have breakfast. And I indicate the menu. It always includes breakfast sausage, juice, toast with blueberry jam, and then some kind of fruit, a banana, or melon, or strawberries, or pineapple chunks.
Sometimes I get a response, a little smile, or nod, or even a word or two. Often, not. It seems to me at that point, she is not fully engaged in the present moment.
Meaning in her head, she had been somewhere else.
Not in a fog.
Just somewhere else that made more immediate sense than my prattling about the breakfast menu.
Respite time almost up and I have gone about as far as I can on this speculative subject for now. My companion, the business man, is still hunched over his laptop. I’ll pack up and head home.
Monday night. It’s raining again, as it has been doing off and on the past few days. At least the oppressive heat is gone for now.
Yesterday, in spite of my earlier decision to give up on keeping the piano tuned, I had Brant come out again to fix the E above middle C key. He did that and more, devising a way to lubricate the action so the keys wouldn’t stick, all the while talking to himself, or his tools, or perhaps the piano. He loves to talk, about all kinds of things, such as his discovery of a way to plant potatoes on top of the soil.
Given how starved for conversation I usually am on weekends, the dog being particularly useless in this regard, I was happy to hear what he said on that and various other topics including environmental poisons of which we are unaware.
After he leaves, I sit down at the keyboard and reintroduce myself to Gertrude and her waltz by pecking out the notes in the first few bars. She does not seem to mind nor does she appear to be happy to see me back.
Not a lot of energy tonight, so I will just try to get back into my thoughts concerning what is happening in Carol’s head.
At supper last night, without planning to do so, I held Carol’s hand with my right hand while with my left I held the fork of food in front of her mouth. I can’t say why I did that, never having done it before during meals. I do like to hold her hand because she returns the pressure and sometimes seems reluctant to let my hand go. On other occasions, she will put her other hand on mine as well so mine is enclosed between hers.
I do not know what to make of this. Perhaps her actions are no more than neurological responses having nothing to do with any thought process or emotion. Or maybe they represent her happiness with the flesh to flesh contact. In that respect, I frequently hold her hand(s) as she is going to sleep, perhaps fidgeting as she sometimes does, and it seems to me doing that calms her down, eases her into a sleep mode as she closes her eyes.
Of course, I can be making too much of some or all of this.
But I am not so sure.
Perhaps these moments of physical intimacy stir pleasant memories.
When I took her hand at supper, I think it was because, as often is the case, her hands were waving about. I believe at those times, she simply cannot control them. Maybe I just took her hand to stop it from moving about in the vicinity of the fork with food on it.
In any case, she squeezed my hand and the involuntary motions stopped.
Absent a better explanation, I will permit myself to believe there is some intent on her part to feel her flesh against mine.