Tuesday, February 5, 2013

What Remains

This is not a question. Because after eight years of pushing back against dementia, I'm constantly surprised at what does remain--the memories, sense of self and humor that Pat still can muster. Tonight, he wanted to be in the kitchen with me. I'd usually push him out into the living area, telling him that the very small galley's not big enough for two, which it isn't. This evening, I let it be. He hovered over me while I mixed a batch of peanut butter cookies and heated baked beans and sausages to make the night seem warmer. We admired three perfect bell peppers together, and then admired them again in the salad, bright squares of red, yellow and green nesting among bronze lettuce leaves.

We lingered over dinner, looked at a photograph of Pat, his father, his son Chris. He knew the picture was taken in Cambria, recognized everyone and knew that it isn't how Chris looks now, that he was much younger in the photo. We talked a little about what was happening in Pat's life at that time.

We spoke of the music that was playing on the radio, a Schubert symphony, and agreed that neither of us had ever cared much for Schubert. We could both hear the bass viol. Pat used to play the bass and can always hear it, but I can't. After dinner, he walked around for a while. He wasn't agitated or unhappy. I checked in with him, we listened to a little more music together and he fell asleep to James Taylor singing "September Grass."

These are such ordinary things, not the stuff of important reflection, unless they are all you have to make a relationship. Then they become precious, vital. When I think of Pat going back into a nursing home so that I can work full time, these are the things I must weigh against my great need to have a normal life. If his experience this past fall is any gauge, he would again, and probably permanently, lose these simple abilities and memories. He would no longer be able to  identify the past as past or talk about the present with anything but unhappiness and terror of the unidentifiable.

But here at home he is mostly himself. His sly comments and half-smiles, his offers to help me with things he can no longer do, certain ways of commenting on ordinary activities like getting dressed. Holding each other, resting my head on his shoulder. These moments are what I have of Pat now. I'm very reluctant to give them up. It's true that I can sometimes draw them out in a hospital setting, but there he must do without that sense of security, of himself, when I'm not available.

Am I taking too much credit for maintaining his well-being? I don't think so. This intimate knowledge of the other is one of the areas where spousal caregiving is very different from parent caregiving. Parents want to maintain their independence from their children--there is much that we don't know about our parents' inner lives and histories. Spouses are bound together by choice, by constant communion, by whatever that mysterious connection is that love and sex create. I call my husband back to himself in a way that I don't think I could call my mother back if she were living in dementia.

Today, I read through a Christmas letter I wrote ten years ago. It included pictures of our dogs who have both died in the intervening decade. I wrote of work, of Pat being so busy with contracting and carpentry jobs that he was having trouble scheduling everyone in, of the beautiful garden gate and courtyard door he made that year for clients, of house remodels, of trips to Big Sur and Pacific Grove, of bicycling around San Luis Obispo, of walking the dogs by the sea. None of that life remains. I'm glad to have the letter to prove it ever happened. It all seems now like a dream I had, years ago.

No. It's not true that none of those things remain. I wrote about a table that Pat was designing. It's sitting behind our couch right now. In a few minutes, I will go and lie down by my husband as I have for so many nights, so many years. I will kiss his cheek, tell him goodnight, tell him I love him and he will reply, if he's not soundly asleep. Just as we always have.

It's not the relationship we planned or the one we actually had for a few years. Sometimes he calls me by a name that is made up of the names of several women he's known. Sometimes, not too often, he asks who I am. But there are these other moments, these glances, these few words. And they do matter.