I visited my husband yesterday at the nursing facility. It is too easy to get caught up in the flow of negative imagination: “Oh, what if he had stopped smoking years earlier?”; “What if I had been more attentive to him before this happened?”; “What if? What if? What if?” I have to stop myself. These trains of thought do no one any good, and I know Alan would never have stopped smoking if the doctors had said he shouldn’t smoke at least until he healed up from his pneumonia, and if I had decided to stop enabling him by bringing him cigarettes. He’s clean two months now, and maybe his dementia helps the situation, because he does not always remember to ask me for them, but he also forgets that I have told him I am not enabling that old habit any more.
Some people might ask why it matters now, or think that he has earned his life and that I “ought” to let him have what matters to him. I think NO! For the last several years of his life I have bent over backwards in many ways that he could have what matters to him, and this time now is important to ME! Perhaps some of his expectant and occasionally demanding behavior was due to the dementia, and perhaps part of it was a need on his part to be cared for, as a need on my part was needing to be needed. All of those shadows in our relationship do not matter any more. What we have been through and what we are left with is a simpler dynamic. I had to confront my anger to realize how much I truly care about my husband, and he had to get over a habitual pattern of anger when he could no longer control his circumstances, and trust the choices I made for him, hard as they were. These things are huge. I never wanted to make those choices for another human being, yet here I am. He never wanted to live away from home, but I could not care for him any more, hard as that admission is.
The dynamic is simple survival, but it is larger than that too. Being human, I suspect we all want our needs met. What those needs are will attract us to one relationship or another, whether in friendships or marriage. I have a lot of good things to say about my relationship with Alan. He truly sees me and accepts me for who I am. I don’t believe anyone in past relationships did that. We have a lot in common: artistic and musical sensitivity that contributed to our creation of a beautiful home together. I miss his innovation and thoughtful contribution to spiritual ideas and metaphysical questions that I was reasoning through. But although he has lost that edge, he still remembers me and when I show up for a visit his brown eyes still dance with the love he holds for me. I will treasure that for as long as it lasts.
Lately I am reading to him. The current book is Charles de Lint’s MOONHEART, a novel I have enjoyed rereading for many years, but Alan never got around to. He says he enjoys having me read to him. I make it fun with voice inflections around the characters in the story, and I delight in looking up and catching a smile that lights up his face from handsome to beautiful. These are the last memories I will capture, so I make the most of such time as life – and his memory – leave to me.
I just want to say this to those who are going through something similar. You are not alone, even though it may feel that way sometimes. I am finding a small community in the friends who have come forward to share their similar experiences with loved ones: parents, spouses, aunts and uncles. There is nothing we can fix, and consequently nothing that we have to feel guilty about. Some advice from me, if you will accept it: learn to catch the negative imagination’s thoughts for what they are, stop them, and find something more fulfilling for your attention. Self-care is so important for caretakers, whether your loved one is at home or in a nursing facility. Do your best to remember the good times, especially when their light of memory dims. And we go on.