The joke ends there. There’s nothing funny about Alzheimer’s. This blog was started mostly to write about writing and literature and maybe a few life events that can’t escape being blogged. But it never was to be about my wife having Alzheimer’s. There are moments when I smile and maybe even find a moment of humor. Janis and I have shared that now and then even these days. Usually, however, if there is any humor to be found in a visit to her now, it has to do with reminiscence. I will watch her doing something all too familiar, but in a child-like manner, and I will laugh quietly, followed quickly by a tear or two. She will look at my face and say, “Are you okay?”. This is hard to cover up. Though I try. Because she is so easily drawn into my emotional state. And that can change the entire mood of a visit. Under these grim circumstances, just imagine how it feels to have her be concerned for me. I, after all, get to go home. She will stay locked up.
I think that as I begin writing on Entangled, I may be able to incorporate elements of both into this blog. Now, however, my life is about dementia. I have three great adult kids, and three grandchildren, and they are very much a part of my life. But the hard truth is that when Janis came down with this disease, it took over both our lives. Of course, she is the one with the illness, but in so many ways Alzheimer’s impacts on the entire family. And so everyday, even good days (a relative term ‘good’), are infected with this cruel sickness. When I see her in tears because she can’t express herself, or is just confused by her surroundings, or trying to grasp what I am saying to her, e.g.”You look beautiful today” and she struggles with the meaning of these words or any simple phrase, the more I try to explain the more she becomes upset. Her Alzheimer’s is of a type that is dominated by aphasia, So, I’ve stopped trying to help her understand and instead I re-direct. She’s a young child after all. These tearful moments hit me hard, and so, yes, this disease hurts. Her and me. I can’t be sure what’s going on with her. But, I sure do know what is going on with me. So sometimes it’s easier to describe what I see, hear, smell, or feel. That becomes about me, but it is really about her, through me.
As I start to write on Entangled this symbiosis may become more clear, hopefully it will help me to understand how our lives became so tangled over the half century we have been together. In the process I hope it will be of some help to others. But mostly it is just me writing and that’s what I do. I want to understand how two kids from two different backgrounds, and quite different childhoods meet, become friends, grow up, fall in love, marry, raise three kids, have all the ups-and-downs of that, and start to grow old together only to be stopped in our tracks and thrown into reverse.
Entangled is still in the brewing stage. As always this takes much time to get settled. I risk being too sentimental (because I am), and I always feel doubt at this stage about how I am going to start. Getting a start that keeps me going is important. Finding a fresh start. An interesting start. But mostly a beginning that will permit development. My sense is that this book will be short. And it may become something other than a straight forward memoir. I have numerous notebooks I’ve kept since Janis was diagnosed. They are extremely personal. But that’s the point I suppose, in keeping journals.
Today. I was massaging her feet (edema). She dozed. I looked up and she was peeking through sleepy eyes. She said, “I like looking at you.”
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