A snowy afternoon. Doesn’t look like serious accumulation yet. Glad I installed a new spark plug in the snow blower, which responded by starting up in a test run.
Carol sleeping in a half sitting up position with a weighted vest on her chest, as per the instructions of the physical therapist, who along with the occupational therapist, will be here shortly to continue their efforts to get Carol comfortable standing up. The vest places weight on the shoulders. The theory is that the pressure will increase the message sent by the neurons in the shoulder to the brain, thus increasing the brain’s awareness of the body’s position. This strategy was, in fact, suggested by Carol’s first occupational therapist. At that time, Carol was still mobile, and we never took up the idea. I can only hope that this neuron stimulation will be strong enough to lessen Carol’s fear of falling enough to permit her to stand, and perhaps even walk.
Therapists have arrived.
It is Friday night, two days later, and my mood darkens as it does at the beginning of every weekend when I know I will lack much human contact. It is approaching midnight and I just finished tomorrow’s Times crossword puzzle, perhaps delaying what I think I will be writing about, today’s startling juxtaposition of the ordinary and the extraordinary. The ordinary included the second day of having to snow blow the driveway. The extraordinary is dealing with what happened two days ago when Carol had a seizure.
The physical and occupational therapists were pushing Carol hard, as they had done in the past. But this time, things did not go well. As in their one fairly successful session a couple of weeks ago before an insurance issue interrupted their efforts, they managed to get Carol on her feet, into the transport chair, and on her feet again in the bathroom where they encouraged her to look at her own face in the mirror.
So far so good. I was in the living room, keeping my distance as I usually do so they can work without my looking over their shoulders. I heard what was going on. Carol was being congratulated for standing so well.
But then, she wasn’t. They were going to change her nightgown. She seems to have become uncomfortable and resisted. Her voice rose. They decided to just get her back into the chair and wheel her to the couch.
They stopped next to the couch. Carol was sitting in the chair with her head drooped. Drool dripped from her mouth and some other liquid from her nose. She did not respond when spoken to. I watched as they lifted her up and placed her on the couch.
After some minutes she seemed to come out of whatever it was. I called the practice and had the therapist describe the incident. I got back on the phone and asked when someone could come out to check Carol.
That turned out to be the next evening. In the interim Carol pretty much regained her normal state, having eaten her supper, gone to sleep, awakened, as usual, had her breakfast and so forth.
The doctor who came listened to my description of what I had witnessed. He said he had not been briefed. Perhaps he just wanted to hear what I could tell him.
I told him that although I had only seen epileptic fits in movies or on television, that is what it looked like to me. He agreed in the sense that he said he was quite sure that she had had a seizure.
A seizure. What exactly is that, I asked.
The brain resetting itself, he replied.
Not a stroke?
No, he said, a stroke would leave the person with weakness on one side or the other.
Why now, I asked.
She’s over 60, he replied, people over 60 are vulnerable to these kinds of seizures.
Connected to the dementia?
Now, two days later during which Carol is as she was before, I have both pushed the seizure aside so as to go on with the business of living while being perfectly aware I need to take it out, stretch it onto a table, and examine it.
Thus, the juxtaposition with which I started.
Ran out of steam last night, so I resume this Saturday afternoon with a heavy snow shower turning the air white. I am not going anywhere today, and I don’t expect any visitors. I will not clear the driveway until tomorrow.
I have been thinking about the quasi artificial deadline that has been shaping my thinking concerning my continuing to serve as Carol’s caregiver in our house. Her seizure, if that is what it was, makes that topic timely.
Months ago, I believe in late spring, I consulted with an elder attorney at a time when the realization hit me that I had better explore my situation in more depth. I had a number of questions concerning such matters as an existing power of attorney document, but the big elephant in the room demanding attention be paid to it involved how I would afford the cost of placing Carol in a skilled nursing facility
My lifelong habit in dealing with such issues is to check out the lay of the land, see what my choices are and will be, and having done that, place the problem into mental storage, until such time as I would actually have to decide on a course of action.
That was my mind set when I consulted the attorney. I was then nowhere near making the gut turning decision of placing Carol into a facility. I had already put her name on a waiting list for the Pavilions, a highly recommended place in town that apparently has a year waiting list. Doing that and gathering other relevant information was all I intended to do as a result of my consultation with the attorney.
We had gone over various matters, but focused on the money issue. That turned out to provide additional support for my usual practice. Specifically, it alerted me to a date in the future at which the financial picture would change dramatically.
That date corresponded to the point when Carol would go on Medicare. Once on Medicare, she would become eligible for Medicaid support for a nursing facility, support sufficient to make that option affordable. My financial advisor had joined me at this meeting, so the attorney had been fully briefed on my resources. With that information , she offered an educated guess as to what my out of pocket costs might be, and they were such as to be affordable.
The attorney’s advice some six or so months ago was to not do anything—she said to hang in–until Medicaid support was available.
That, of course, suited me just fine. It strengthened my resolve to keep Carol with me at home, if for no other reason than financial stability. It kind of took the decision out of my hands. Even if on certain days when freeing myself from my care giving responsibilities seemed attractive, I could always tell myself, just wait, don’t do anything precipitous.
I knew then that this reasoning was something of a diversion. In the first place, I realized that if absolutely necessary I could absorb the cost of a facility for the months leading to Medicaid coverage. The attorney had said she might be able to secure that coverage earlier, but it would be difficult.
In the second, and more important, way, it made the real issue secondary, when I knew, if I wanted to be honest with myself, that it was, and is, primary.
And that is whatever the money parameters, the real decision resides in my heart. At what point, under what circumstances, or stress, or emotional exhaustion, will I be ready to leave behind the fiction of living with the Carol that was, and accept the reality that the Carol that is must be put into professional hands, and my doing that will in a very profound way change my life, knowing, as I do, that the change might be of minor concern to Carol herself. Someone else would attend to her, as I do now, and she might not remember from time to time, who that person is, as she does not always seem to be aware of who I am.
That last, of course, is the hardest morsel to swallow, anticipating, perhaps, the possibility that when I would make my visits to her, she would not know who I was.
Until now, I did not realize just how devastating that would be, how difficult to accept the reality that from her perspective I no longer existed although her memory of me might linger indefinitely.
Carol is now within weeks of being Medicaid eligible.
I will have to confront my decision making without the cover of needing to wait.
That is, how it should be. Such a decision should be make in all of its hideous nakedness. No fig leaves. No diversions.
Just what it is in on its own unforgiving terms.
In that regard, the image of her sitting almost lifeless in that chair stays with me. It is not so much the drool, or the mucous, if that is what it was, dripping from her nose. No, it was the way her head drooped as though never again would she lift it up, that and the failure to respond to words, or a touch, a squeeze of her hand.
I suppose in my mind at that moment it was like touching a corpse.
A hideous exaggeration of the facts, to be sure, but since when do emotions pay much attention to facts?
I saw in her inert being the time when she would no longer be, when all traces of the Carol that was would be irretrievably gone.
And, in a sense, that is not so wild an overreaction.
For her dementia has already put her on that train, which might, any day, leave the station.