Monday night after dinner. Carol still in her chair after eating at the dining room table. Soon I will want to move her into her bed for the night, so I am stealing a few minutes of writing time now. A little later I will be watching the late Dodgers game from the coast.
This morning as we were both rousing, Carol clearly called out “Steve.”
I answered, “I am right here on the couch.”
She replied, “I know.”
What exactly did she know? That I was where I said I was. That is the minimum, I suppose, acknowledging that my male voice came from close by. That I was the one always nearby. To be sure.
But what about the next step, and the one after it. First that I was Steve, and, here’s the important part, the Steve who is her husband, is now her husband and not was her husband as a shard of memory.
Of course, even the minimum answer is a positive, showing her connection to the here and now as she woke up. The moving up the scale toward her acknowledging me as her present mate is maddening.
Maddening because it makes the present unclear and the future uncertain. I do not think that the downward course of this disease can be changed. Perhaps stabilized for a while. But for how long?
I am so used to thinking in known time intervals, so many days before the third Wednesday when my Social Security check is deposited, or years ago, charting when I would retire, the timing of life’s moments big and small, has always been clear to me.
But not now.
I don’t know if I would be happier with a timetable telling me how this disease is going to work itself out.
Sort of like the cliched question asking what would you do if you had 24 hours to live as a matter of certainty.
A timetable would provide the kind of certainty I am used to dealing with.
But the point is, I don’t want this damned disease to complete its job.
Thursday night. No music on. Trying to squeeze out some words. There are times, fortunately for me not very often, when I have to push hard to get started, when the blank screen and the beckoning keys do not perform their usual magic of opening up that part of my brain from which language, almost unbidden, usually flows.
So, we’ll start and see what happens.
Today, Clare, the nurse practitioner, gave Carol a good report on her physical condition. Beyond that she shared what has now been a repeated observation that Carol seems more aware, more responsive, and less resistant, all good signs. Clare asked if Carol ever smiled.
“Yes,” I said, “on occasion.”
“Are you familiar with FAST? Clare asked.
She tapped the keys on her notebook and brought up a screen with that acronym as its heading. Below the heading was a list of the seven stages of dementia. Next to number seven was the notation of losing the ability to smile. Apparently, FAST is a dementia scale, a tool that indicates the degree the disease has reached.
Clearly, I was not happy that Clare’s question about smiling appears on the end of the scale.
“Does that make you uncomfortable?” she asked.
“Yes,” I replied. “But with or without it, I know what I am dealing with.”
We turned in a more positive direction.
“We can increase the dosage of Galantamine,” she said, “assuming it is responsible for the improvements in Carol’s condition.”
And so we agreed to up the dose from sixteen mg a day to twenty-four, the maximum allowable. Perhaps the increased dosage of this medicine, which Carol has only been on for a few months, will continue the improvement.
I am doubtful.
Well, some words came, and now it is time for sleep. Tomorrow I intend to go to the main library in town for another writing session.
Saturday afternoon. I did in fact go to the library but spent writing time revising my upcoming blog post, so didn’t add new material.
When I arrived home from the library in town yesterday, Tonda, the aide, was apologetic. “I could not get her to eat lunch,” she said. “I tried, but she just went back to sleep and has been sleeping all afternoon.”
I assured Tonda that this was not that unusual. Carol often slept a lot in the afternoon, and was not always interested in lunch.
But I was mistaken.
After Tonda left, I could not rouse Carol for more than a few seconds. She felt a little warm to me. But Tonda had said that Carol had complained about being chilled and so she had bundled her under two blankets. I removed one. After a while, she remained warm to my touch. I was able to rouse her a little bit, long enough for her to sip some water, and take one apathetic bite of a protein bar.
And then back to sleep.
Suppertime was approaching. Carol seemed to be drooling a little bit. I wasn’t sure her eyes were focusing properly.
Was she having, or had she had, a seizure?
I tried talking to her, but she did not respond.
I was getting seriously worried.
What to do?
It was late afternoon, after five, but I called Chronic Care anyway. Predictably I got a message that the office was closed.
But at the end of the message, there were instructions for help with a medical condition that could not wait. Call Munson Hospital and ask for the Chronic Care provider on call to be paged.
Within a few minutes, the phone rang. My caller ID indicated “Private Caller.”
Just what I need, I thought. A junk call. I don’t always let the answering machine take those calls because the caller often leaves thirty or so seconds of static. I pick up the phone as though answering it and then hang it up.
But this time before I could get to the phone the answering machine had been activated and I heard a voice identifying herself as the on duty Chronic Care provider.
Much relieved, I spoke with Angela. I described what I had been dealing with, speculated that maybe Carol had come down with something that produced a fever, didn’t think, as I was giving voice to thoughts running through my head, that she had had a stroke because she had been able to squeeze my hand. Yes, Angela replied, that sounds right. A seizure? Possibly, if she had already had one it would be hard to tell. I would like to check her temperature, I said, but I won’t be able to get her to hold the thermometer in her mouth.
“Hold it under her armpit,” Angela replied.
“Yes. It’ll take a little longer to get a reading, and it’ll be about a degree lower.”
I looked over at Carol at the short sleeved nightshirt she was wearing, contemplating having to remove that.
“That’ll be a bit of a process,” I said.
“Well, keep an eye on her. What time do you usually have supper?”
“About seven, seven-thirty.”
“See if you can rouse her to eat something,” she said.
But as that time approached, and she still felt warm, and unresponsive, I called again.
“I’m going to try to take her temperature,” I told Angela.
I did not try to remove the nightshirt. Instead, I rolled up the short sleeve far enough for me to get the bulb of the thermometer nestled in her armpit and held it there. When I thought I had held it there long enough, I took it out.
It read 100.
Add 1. 101.
I wanted to be sure it had been under her arm long enough, so I put it back for another minute, removed it read it.
I reported the result to Angela.
“Shall I give her aspirin?” I asked.
“Tylenol would be better, “she replied.
In the downstairs bathroom there was Motrin but no Tylenol. I still had the phone in my hand, and told Angela I was going to look in the upstairs bathroom.
I did and found Tylenol.
“How much?” I asked.
“Is it tablets or capsules?
“One and a half. Can you cut one?”
“I have a pill splitter,” I replied.
I administered that dosage in applesauce, as I give Carol all her meds.
In about an hour, the phone rang. It was Angela.
“I’m about to check her temperature, “I said.
“I’ll wait on the line,” she said.
This time the thermometer read 97. Add 1. 98.
“Good,” Angela said. “Try to give her some supper. Call me if you need to. I’m on all night.”
Carol roused, and ate some yogurt, drank some water.
Went back to sleep.
I fixed myself a frozen dinner.
This morning, the phone rang again. I don’t recall what the caller ID said. I answered it. It was another nurse from Munson. I told her Carol now seemed OK.
And she was.
She had a full breakfast, and a good lunch. No sign of fever. I expect she will eat her supper in a while.
That’s what happened. I still need to digest and then write about it.
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