I have mentioned the book Ten Thousand Joys, Ten Thousand Sorrows by Olivia Ames Hoblitzelle. It is the first book I came upon that was written by a spouse--of a man with advancing Alzheimer’s disease. She is a fine writer--insightful, and able to speak in psychological terms re: her experience as well as her husband’s. She is steeped in Eastern (Buddhist) approaches, yet doesn’t sound too holy or self-righteous. Here is a journal entry of mine from over a year ago after having read this book. It is still fresh and relevant in its ideas and its message.
Nov. 6, 2010
This book has turned up at the right moment for me in my journey toward ‘acceptance’, I’m not sure I would have “gotten it” before. Who knows, however, maybe I wouldn’t have struggled so much in the last years with anger and frustration if I had found it earlier.
Here’s my insight:
There seem to be two parallel but distinct paths I am on. In some ways they can intersect, but in other ways they have lead to confusion and frustration. It seems to me what she is saying is that acceptance and finding opportunity in what is are both very central. One path is that what I am to accept and "go with" is the acceptance of A's diminishing abilities and interests. Acceptance of his movement into confusion, silence, closing down of pastimes, activities. The opportunity here is to live more simply, be more in the now, savor what is, etc. The other path also involves acceptance and opportunity, but here the acceptance is about the requirement for me to step up and be more--both in order to cope and function for the two of us, but also so that I don’t fall by the wayside while walking A's path with him. Here the opportunities are ‘burning through Karma”--realizing heart and soul growth, finding the way to live in compassion and tenderness while still growing and exploring as-yet unexplored strengths and pathways in life.
I think in the past I have been focused on the loss--loss for me of what A. was and what I used to be. The loss of our once-working relationship as it was, and the plans, hopes, and freedoms of this last time in our lives before we have to give in to age and infirmity. There has been deep sadness regarding his losses (which I have been only too quick to label as unwillingness instead of inability). But here it seems my challenge is to press forward inside myself while allowing A. to step back. It is a hard thing to automatically adjust to--particularly since in retirement years the idea was that we were to press forward with each other like two draft horses, or skating partners. Therefore the idea that what happened to him meant things would happen to me in the same direction, and vice versa.
Now the challenge is to figure out how to remain connected to one another while A. quiets down and I keep growing and developing. Doing my growth in some kind of deep tandem with where he is. It certainly is daunting to think about. Yet it also has elements of release for me. It's a release of sorts to consider that it is a necessary part of my spiritual journey to keep developing--developing parts of myself both in response to what happens to him (finding compassion and tenderness and new means to togetherness) and at the same time allowing parts of me to grow in other directions, too, so that there is substance left to me as he continues to journey down into dementia.
On the face of things it seems to be unequal, looking at things from my perspective. Underneath the surface, of course, A. is actively adjusting to loss and change all the time, and that is a piece of work. But seen with more self-involved eyes, it seems he gets to rest and let go while I have to work hard to figure out how to still grow and cope and keep alive. In a way, though, that arrangement suits my nature--if the shoe were on the other foot I think he would sink with me--be less able to do the forging ahead. (But maybe I am thinking of A. as he has become instead of who he was. It has been so long that he has been losing himself.) In any event, I have always been the ‘going out’ person of the two of us--the seeker of new things and people, the conscious worker at understanding and developing new aspects of myself in relation to him and to the world.
An aside: Right now as I sit here I am fighting the thoughts that I ‘should’ be doing something more ‘purposeful’ with this afternoon: cook, sew, knit, do bookkeeping for the business, etc. But I am forcing myself to stick to what is happening right here. Oh the hobgoblins of DUTY!! And oh, the challenges of finding enough TIME!)