Sunday night a little after midnight. The dog is snoring loudly, an uneven accompaniment to “After Hours” played by Gillespie and the two Sonnys, Stitt and Rollins, in my earbuds from Pandora.
It’s been a quiet weekend with a little more snow but nothing serious. The Times hadn’t arrived at the store when I came for Carol’s muffin, so I read parts of the paper online. I had done the Sunday puzzle last night. Watched hockey and baseball this afternoon and the season ending episode of Victoria tonight.
Carol just laughed in her sleep. She does that from time to time although perhaps less often than she had been doing. I don’t know whether to attach any significance to the change in frequency.
More importantly, it opens the door, once again, to speculation as to what is going on in her mind to which she no longer can give voice. But that there is some cognitive or memory activity seems beyond doubt, and trying to penetrate the mystery of that something demands my attention even though I know that I will never be able to peek behind the screen of her disease to discover what prompts that occasional laugh. A joke? An incongruity? A physical stimulation caused by her movement in the bed?
I have not heard her say my name in a long time yet it seems clear to me that on some level she knows me. Perhaps not as her husband. Maybe as her caregiver. Maybe not even anything as specific as that.
When Tonda left Friday afternoon, after commenting that she had had a good day with Carol, she said something like, “I’ll leave you now with your beautiful wife.”
Of course, whether or not Carol still knows that she has a husband, I think of her, even in her reduced state, as very much my wife.
Which leads me to a thought I have been having lately, namely, my reaction when people, in all good conscience, compliment me for being a good husband, for taking such good care of my wife.
I am doing the best I can to make Carol’s quality of life as best as possible. For example, I picked up on Tonda’s suggestion, after all this time, to raise the blind next to the hospital bed, which I had kept down to keep out the draft, and then have Carol lie on her right side, so she could look out of the window at the huge lilacs on that side of the house.
She must have loved the outdoors, Tonda had opined.
Indeed, she did.
And perhaps still does.
The constant question.
How much of the then Carol persists in the now Carol? I’ve gotten used to her new normal, grafted it, in a sense, on my memory of her as she had been. I am holding on to that composite of the once was and now is Carol.
When I am complimented for my good care of Carol, I want to say, “But yes, I am doing this for me as much, and perhaps more, than for her. It is possible that were Carol in a facility her care would be as good, maybe even better, than what I can offer. At least, it would be professional. I am taking care of her in our house because I cannot imagine, at this point, being without her physical presence in my life.”
But I don’t say anything like that because I cannot imagine that anyone who has not experienced what I am living through could, despite his or her best efforts, understand. So, I just accept the compliment and say “We’re doing the best we can.”
Not, I’m doing the best I can. But we are. Because I insist there is still a we.
And I also tell myself, with some justice, I can give Carol what no nurse or other medical professional can and that is a bridge to whatever memory however faint, she retains of me and our life together.
That is no small thing.
But I still haven’t touched on the other side of the coin. Which is I am standing on the other end of that bridge reaching toward her, so I can bring myself to her.
In deep waters. Will pause.
Tuesday night. The dog, after rousing herself to walk into the kitchen to slurp a drink of water from her dish, has settled into her bed. The electric heater, set to automatic, has just turned itself on filling the room with its noisy hum. Carol is sleeping peacefully on her side.
That is the important fact with which to start this writing session.
Carol usually sleeps, rather restlessly, on her back, from which position she manages to still get her feet jammed between the mattress and the bumper, or sometimes even to throw her leg over the top of the rail. In that position as well, she usually breathes noisily through her mouth.
But now, her breathing is quiet and she is mostly still.
About an hour ago, she fell asleep with my arm around her and my hand in hers. We were lying together on her bed in the spoon position. Reaching this point evolved over several stages. At first when it was time for her to go to sleep, I leaned over the bed and held her hand. I noticed that this contact seemed to settle her into a sleeping mode, and so I would wait until her eyes began to close. Then, I would say good-night, release my hand and fix the blanket around her.
But standing in that position, sort of leaning toward her, was difficult to sustain for the length of time it took for her to reach sleep. I began to sit on the edge of the bed. But that, too, was a bit awkward as the back of my thighs pressed onto the top of the lowered side rail. I began to shift my weight toward her with my arm across her chest to reach her hand. Again, I was not happy with that arrangement. I did not want my body weight to come down on her and it was a bit of a strain to prevent that from happening.
Thus the spoon position, in which both of us would be comfortable, I would still be holding her hand, and the same relaxing into sleep process occurred.
None of this would have mattered if I were going to just wish her good-night, and then go about my business, just like I always used to do. But now I enjoy watching her relax into sleep. For that moment, all is well in our little world.
When she feels my presence, she relaxes. I stay with her like that for a while until her breathing gets regular as she drifts into sleep. I cannot explain why she reacts this way. I imagine she feels safe. Perhaps a shard of memory from our past sleeping together in the same bed rises from some distant corner. In a way, her reaction in this situation is an amplified version of what has always seemed to happen when I take her hand. On those occasions, as well, I noticed a calming effect, and sometimes what appeared to be a reciprocal pressure, a bit of squeeze around my fingers. I thought, then, and do now still believe, that such a response might well be more neurological than emotional.
But maybe not.
I simply cannot know.
I have decided that I don’t have to. What is more important is how I feel about these occurrences, particularly when I have my arm around her and hear her regular sleep breathing.
At those times, I am holding on to a memory. Or more precisely, I am recalling that memory. And, I too, for those moments, feel at peace. I know nothing about our situation has changed. She will not miraculously get better and be the person she was. That is not going to happen.
Yet, in those moments, without conversation, it is as though we have agreed to just live in that moment and not ruin it by burdening it with analysis or expectations or regret or hope or anything else.
Just let it be what it is.
And that is more than good enough.
For it establishes a way for me to deal with the perplexing and frustrating task of living with what remains of the woman who has been so important to me every day for almost forty years from the beginning of my middle age to where I now sit in my senior years with the prospect, perhaps, of outliving her, and so face my own end alone.
And so with due apologies to Paul McCartney, without asking any help from Mother Mary, with no attempt to sing the line on key, but with a bit of Brooklyn emphasis I insist that I will just damn well let it be.
4 Responses to Just Letting It Be