Spent the morning dealing with issues related to the historical society web site for which I used to be the webmaster, hugely assisted in that capacity by our daughter Danielle. The society, as an act of mercy, has taken that responsibility away from me, and in so doing contracted with a new web hosting service. That, in turn, involves removing me from the domain name, and doing that runs into password issues, all of which we managed to straighten out.
It always feels good to problem solve, especially now when the problem has nothing to do with Carol. However, soon after that issue was taken care of I confronted another insurance issue, this one involving payment for physical and occupational therapy. An hour’s work with the physical therapist who used to work as a case manager in insurance and can talk insurancese seems to have solved that problem.
The physical therapist is the only one of the professionals I have been dealing with who seems wholeheartedly to agree with my decision, thus far, to keep Carol at home with me. Other views from family, friends, and professionals range from the I should think of myself school to those who don’t take a position but respect what I am doing to others whose focus is only on Carol and what can be done within the parameters of my decision.
In truth, there is no good answer. That seems to be the rule in all matters related to the course of this disease.
My present situation offers substantial pluses and minuses. On the plus side, and in keeping with the thread I have been developing in this blog, having Carol here with me offers a stasis between the then and now. Except for largely now discarded items such as the walkers and travel chair scattered about the house, our living environment hasn’t changed much. And, of course, her continued presence, especially when we sleep near each other, reinforces the continuity of the then into the now.
But I am sort of living alone since we do not really interact in meaningful ways as once we did. I have lived alone at various times in my life, most particularly as a point of comparison, after my separation from my first wife. But in that situation, I was free to live as I pleased, go where I list, while maintaining my professional obligations, going to work and socializing when and with whom I chose.
Now, though, my activities are circumscribed, conducted only at times when I have arranged for caregiver relief. So, in a sense I am living alone while not living, strictly speaking, alone. I serve Carol food but eat by myself. For the evening meal, I make two place settings at the dining room table as if for both of us, but take Carol’s plate and silverware over to the couch where I help her eat her dinner. Then I sit by myself at the dining room table with no-one to talk to.
Breakfast runs the same way although for some reason I have mine in the kitchen. Maybe I do so to be near the Keurig and/or the dog’s dish. And of course, I must retrieve the local paper without which it would be impossible for me to eat my breakfast.
Lunch is a hit and miss affair for both of us, but in practice comes closest to accurately illustrating my immersion into the now. Carol often is not hungry for lunch. I sometimes skip it as well, or grab something quick like a cup of yogurt. When Carol does express an interest, I bring her a protein bar or a sandwich. Only very rarely do I eat lunch more or less at the same time.
These mealtimes scenarios exemplify what I am talking about. Lunch is the most accurate representation of our now reality. Breakfast and supper, on the other hand, hover betwixt and between then and now, beginning with the pretense of a shared meal, quickly dropped, and followed by the cold reality of now, as we take our sustenance separately.
[I’ve been looking for a place to insert the following, written some time ago. Because I’ve been talking about meals, and the thoughts in the piece below were prompted by food shopping, here is as good a place as any to offer it.]
Traverse City and the peninsula north of it where we live have a large, perhaps disproportionate number, of permanent older residents. Some are retirees who have come to enjoy the arts and culture the small city has to offer along with the beautiful landscape of water and hills. Others are retirees of a different sort, the older generation of the farming community, who see no reason, as many of their peers in other places do, to move to Florida or Arizona or other warm weather havens. Some of these do winter in those places while the hardier ones stay home and deal with the cold and the snow.
The point is that whenever I go out after the tourists have left the odds of seeing folks sixty years old and above are strikingly high. In the grocery store today, I was walking behind a white-haired woman pushing her cart, accompanied by a middle-aged woman, who appeared to be her daughter, or at least a close relative. Together, they were filling their cart while discussing the choices available on the shelves. The older one could easily have been in her eighties. She walked with care, but she walked. And she was fully engaged in the shopping.
In the same store, I bumped in to an old friend of Carol’s, a woman with whom she had worked on various local history projects. That woman was a descendant of one of the original farming families. Her intense interest in her own family, and by extension, local history led her to me when I was working on my historical novel set here and based on a sensational 1895 murder case. She and Carol became fast friends.
She was there shopping with her husband. We chatted a bit, and I filled them in on Carol’s condition. We discovered we were all in our middle seventies.
The first woman was in her eighties.
All of us doing our weekly grocery shopping.
What’s wrong with this picture?
Carol is not yet sixty-five, and will never again join with me in this mundane chore.
And I feel profoundly cheated.
Cheated in a particular way that Stephen Crane wonderfully presented in his short story “The Open Boat.”
“When it occurs to a man that nature does not regard him as important . . . he at first wishes to throw bricks at the temple, and he hates deeply the fact that there are no bricks and no temples . . . . Thereafter he knows the pathos of his situation.”
Thus Crane describes the thoughts of a man in a lifeboat, who contemplates the real possibility that he and the others with him in the boat, could well die, killed by the indifferent force of nature, the ocean on which like a tiny cork they bob within sight of land they cannot reach.
That is how I feel. I want to strike out at something, but can find no target except the indifferent force of dementia.
Carol’s disease substitutes for Crane’s nature, both violently hostile, and yet indifferent, seemingly unaware, of the damage they inflict.
This train of thought brings me to another piece of Crane’s writing, one of his bitingly acerbic short poems:
A man said to the universe:
“Sir, I exist!”
“However,” replied the universe,
“The fact has not created in me
A sense of obligation.”
Yes Carol and I exist.
Bobbing on the indifferent waves in our own little boat within sight of the unreachable and slowly receding land.