Wind howling outside confirming winter weather advisory of snow starting tonight and continuing all day tomorrow with predicted accumulation perhaps a foot or more. That will most definitely complicate my schedule this week.
We’ll see. Such dire predictions have been wrong before. The wind rattling the window behind me, however, says not this time.
It’s been five days since Carol’s seizure, and there is no sign of a recurrence. If anything, her appetite seems better, not that appetite has anything to do with the seizure. The point is she seems very much like she was before. Even now, as our old mantle clock struck eleven o’clock, she yelled at it to shut up. Which is what she generally does.
I was about to say she was back to normal, but had to correct myself because that word has lost any semblance of its usual meaning. What exactly does normal mean when applied to someone with dementia?
I’m sure I don’t know.
What I can say is that her behavior, whatever word is used to describe it, does follow certain patterns and remains within the parameters thereby created. In that respect, she is back where she was before the seizure.
But this little exploration of semantics, so natural to me, raises difficult questions. If I can’t define normalcy in the context of dementia, I also recognize that I try very hard to convince myself that a measure of the ordinary understanding of that word persists.
I am not exactly lying to myself. I know that much of what I do as caregiver, starting with hand-feeding her breakfast to settling her down on the couch for sleep, and everything in between, is anything but normal.
Still, I hang on to the slivers of behavior that enable me to, for a moment or two, buy the fiction that things are normal. From time to time, we do have snippets of conversation. Tonight she asked me who Ed was. I replied that maybe she was thinking of her father’s friend of that name. Yes, she said.
Did she actually remember Mr. Ed Brown who has been, I believe, gone for some time?
When I told her about the snow storm on its way, she nodded, a non-verbal affirmation that she knows all about the winters here.
Over the course of any day, there are not many of these moments. They tend to be overshadowed, or overwhelmed, by utterances and occasional behaviors formed by her dementia.
But when they do come, they are both precious and dangerous.
Precious because they lift my spirits, push off for a while the black cloud that hovers over us.
But dangerous precisely because that cloud is the new normal, however we want to define that term,
Once again in my chair across from Carol just falling asleep on the couch. For some reason she was in a combative mood, perhaps because she had been bathed by the aide and she does not like being so handled.
The major snow storm did not materialize, and the winds have died down. Winter is settling in.
Tonight is the first night of Hanukkah. In years past, Carol would watch while I read the prayers and lit the menorah. She always encouraged me to maintain my hold on my Judaism. She bought me a three volume history of Jews in New York, and was happy to help prepare a Passover meal that we hosted for our close friends.
But this year there seemed no point to pull out the menorah and order the necessary candles online. For whom would I be doing this? The dog? Myself? The solitary nature of the activity just didn’t make any sense to me.
Doctor just arrived to check Carol. I continue to be thankful for this new practice that offers home visits. Carol checks out fine physically, heart, bowels, blood pressure, pulse, all vitals good.
A medical professional confirms that Carol’s physical self remains unchanged. Her mind, however, has not, and perhaps will not, find its stasis.
I attend to the former as best I can.
The only thing sure about the latter is that with slight up and down variations its own pronounced movement will be down.
Saturday night, an unusual writing time for me. But it is has been a very quiet day, no more than a half dozen words exchanged with another person, in this case the woman window clerk at the local post office. The quiet amplified by the unremitting white landscape. In “Desert Places” Robert Frost describes walking past a field being covered in snow, suggesting that the whiteness invites an apprehension of annihilation. One doesn’t have to be literary to be somehow distraught gazing out of the window at a white blanket that covers all that is familiar with a blank stare coming back at you.
And so my antidote to such a feeling is to fill a white page on my laptop’s screen with black words.
These weekends as I have no doubt said before are difficult. I cling to Carol’s presence as non-verbal as it is for the most part. Oh, we squeeze out a few words back and forth that leave the impression of a conversation, but I know I am fooling myself.
Which I do regularly, leading to my decision today that I would try to begin a program that would lead to Carol regaining her ability to stand.
And then to walk.
I would ever so gently have her take my hands, and permit me to help her sit up straight. Our very comfortable and yielding sofa encourages you to sink back into it. It does take a little effort to push yourself into an upright position from which you can then get up onto your feet.
Of course, it did not work. At first, she seemed willing. But when I held out my hands, her fear won out and she just settled back into her usual half reclining position.
I will try another day.
I do not want to give up just yet.
Perhaps I am motivated at this time by my shiny new leased Camry in our garage, the possession of which reinforces the idea that in some ways life can move on in a positive direction. Carol loved cars and took exquisite care of her Subaru. I know she will never sit in that new car, never enjoy with me its comfort and power. That is beyond reasonable expectation. But if she were to get back on her feet, perhaps she would be able to get to a window where she could see it. That would be something.
Or maybe I am thinking of our daughter’s visit next week, and would like her to be able to see her mother standing up.
These are, in some ways, ridiculous motivations. But they are also quite real.
I know this disease is irreversible.
And yet I try.
A couple of days ago, I brought up from the basement the miniature Christmas tree we have had for years and years. It has a string of blue lights on it, some beads wrapped around it, and a handful of ornaments, including one that has our daughter’s name on it, dated 1998. I plugged it in and got Carol looking in that right direction.
I convinced myself that she saw it and acknowledged its presence.
Maybe she actually did.
Looking back over what I have just written, a thought strikes me.
The white I began with is Carol’s disease, covering, what she was, no covering is not a strong enough word, better to say obliterating, day by day who she was. But even under this blanket of snow, as the stubble in Frost’s poem still pokes through the white, are the shapes being covered, so the snow mimics those forms, there a rise indicating a chair on the deck, there a bulge where the watering can I left still sits.
It is those shapes and forms no longer the things themselves that are like the traces of Carol still pushing through the obscuring, the suffocating, white of her disease.