Late Sunday night, too late to start anything of substance, so I’ll just mention a couple of things, and then see what I can do tomorrow.
Thing one: a little while ago I held Carol’s hand as she fell asleep. I have been doing that regularly, and perhaps will have more to say about it.
Thing two: I ordered Carol’s half wrap at lunch on Friday and served it to her that evening with our regular chicken soup plus sandwich dinner. The sandwich used to be tuna fish. She ate the wrap with enthusiasm.
Monday night after a pretty good day. Cleaners came so house is in better shape, and Ryan joined us for a Chinese takeout dinner. He’ll stop by tomorrow to give me a hand hauling up the heavy storm doors as it’s time to get serious about the oncoming winter.
The main plus today at the end of my long weekend is an opportunity for social interaction and conversation with both the cleaners, who have been coming here for years, and, of course, Ryan. I need to find ways to combat isolation, so as to build on these people interactions, I am planning on using respite time later in the week to go to town to see a movie, probably the new Redford one. Maybe even stumble into somebody I know.
Over the weekend Tracy called on Saturday and Danielle texted me on Sunday, and those contacts seem to be becoming regular occurrences. That eases my mind about the long hiatus each weekend when nobody would know if I were alive or dead. Not a morbid thought, just a practical one.
I read in today’s newspaper how a woman was stuck in her bathtub for five days because she couldn’t reach a grab bar. She used warm water for heat, and drank cold water. For five days until a mail carrier noticed her mail accumulating and that discovery led to her being rescued from her predicament.
So not morbid, just practical.
That issue shelved for the while, it looks like our lives have settled in to a potentially long, stable period. Carol’s cognitive issues, if anything, are a touch better, and her physical health remains good. She is eating well. Her nose still is stuffed as is mine, but she is not having much difficulty swallowing.
I am a creature of habit and function best within routine, and that is where I am now. Our daily pattern does not vary much. In the morning, I transfer Carol to her chair and into the kitchen for breakfast; then we move back back into the living room where she dozes in her chair, and I do puzzles, or write or attend to correspondence on my laptop; lunch follows for both of us, Carol sometimes still in her chair, other times in bed while I generally eat mine in the kitchen; after lunch on non-respite relief days we follow the routine very much like the mornings with Carol back in her bed after a while in her chair while I again get on my laptop for work, socialization or amusement; for supper Carol is in her chair at the dining room table; after supper, she remains in her chair while I watch a little television and after a couple of hours transfer Carol back to her bed; later, usually about eleven, I get her ready for sleep, and once she is settled, I follow my lifelong habit of writing in a silent house. Then, I read for a while lying on the couch where I sleep. Some time ago, I bought a wrap around your neck reading device with two small bulbs that produce concentrated beams sufficient to illuminate the pages of a book. Using it, I can read while the rest of the room remains dark. Reading before I sleep is another old habit.
Thus the rhythm of our lives in a comfortable, repetitive pattern. I, of course, still often feel isolated, legitimately so, but the routine is a great help.
For both of us.
I believe Carol has responded well to the patterning of our lives. I don’t know, absent any research, whether such patterning is thought to be good thing for dementia patients, but my observation would suggest it is.
The one moment in this routine that is new and which I most deeply appreciate is my holding hands with Carol as she falls to sleep. It is now a regular part of our routine. I sit on the edge of her bed, and take her hand. She returns the pressure, and usually places her other hand on top of mind,
I treasure these moments as I sit next to her, feeling the pressure of her fingers around mine, and studying her face as her breathing becomes regular and she relaxes into sleep. When I am sure she is fully asleep, I remove my hand from her grip as gently as possible, stand up and turn off the lamp that is behind her bed.
It is a pale echo of how we used to sleep together, but it still provides a sense of physical intimacy that transient as it is, as much as a reminder of a lost past as it is, puts a gentle close to my caregiving responsibilities.
Then, since it is usually not yet midnight, and my bio rhythm perks up at that time, I write.
As I have always done.
This ordering of our lives, into which I mix the necessary chores of keeping food in the house, paying bills, attending to whatever problems the house, inside and out, decides to present, schedule necessary doctor appointments for both of us, this structure enables me to maintain my equanimity in the face of this most difficult situation.
And it does one more thing, a most necessary thing: it provides regularly recurring time slots during which I can write, as well as to attend to the business end of writing. I don’t have as much time, or energy for that matter, as perhaps I once did. But what I have is enough for me to continue practicing what is so essential to my nature.
Were she able, I am sure Carol would agree as she was always so supportive of me in that regard.
Were I to stop, I believe I would be failing both of us.
Anyway, I don’t think I could if I wanted to.