Yesterday, the cliché goes, was the beginning of the rest of my life.
My neurologist’s diagnosis of Alzheimer’s stuns me. While he never said he was certain, I’m familiar enough with doctor language to know that he’s almost sure. In the first few moment after he told me, there were a few minutes of confusion, but then I realized I was not surprised, especially after I’d not been able to reproduce the drawing of the cube.
One small part of me actually felt relief. Finally the meaning of all my symptoms made sense. At an unconscious level, I suspect, I had known. The uncertainty had been relieved. I felt a kind of calm in my soul.
But for another part of me, an abyss had just opened. My life would be forever changed. I wasn’t in denial: I knew exactly what was going on and what the ramifications could be.
I asked some pertinent questions, made a follow-up appointment for six months and left without demonstrating much emotion.
As if to confirm the diagnosis, I got lost on my way home from my appointment with the doctor. “Lost” may be too strong a word. I knew approximately where I was and which direction I wanted to go in. The north-south streets in Washington are numbered in order and the east-west in alphabetical order. This should not have been difficult. I went back and forth confused about how the street names worked. Things didn’t really clear up until I meandered into familiar territory. From there I found my way home without trouble.
Last night I emailed the doctor, mostly to get into writing what he’s thinking and to make sure I didn’t misinterpret what he said. Is the disease progressive? Is it Alzheimer’s?
As Kaiser doctors usually seem to do, he responded promptly this morning. He’s pretty confident that I’m “transitioning” gradually into dementia. Since the radiology, blood tests and physical exam haven’t picked up any other causes of dementia, it’s “most likely” Alzheimer’s. Given doctors’ usual reluctance to commit themselves unless things are quite certain, he’s giving me a clear message. There isn’t much doubt.
I’m alternating between among periods of a) almost forgetting about the diagnosis, b) suddenly remembering it and c) feeling terrible sadness. I don’t feel scared. I’ve never consciously felt afraid of death. I don’t usually get worried about future pain. I’m not afraid of physical illness that leaves me significantly impaired. I wouldn’t invite any of those in, of course, but I’ve been around death and dying much of my professional life and I’ve done formal meditations on my own dying and my body’s decomposition after my death. But Alzheimer’s has always seemed like the worst way to go out. So I don’t think I would be scared of cancer or another physical disease leading to death. Curiously, I feel more sad than scared: sad that I’ll not see much of my grandchildren’s growing up, sad that people’s last memories of me will be of a body unable to recognize anyone or speak cogently, sad that Marja and I won’t grow old together and that she’ll be burdened with taking care of me. That last thought almost brings tears.
What will happen to my relationship with Marja? It will change dramatically, of course, and eventually she won’t be able to depend on me for much of anything. She’s very independent, though, and will probably do okay. I have no fear that she will abandon me, but what will it be like when I see her depending on others the way she now depends on me? Will I feel the pain of jealousy as if she were deserting me for someone else?
I’m sad that I’m going to be foisting off a severely demented husband on her. She’s had over twenty-five years dealing with the unpleasantness of my severe depression. I feel awful—even irresponsible—that after less than twenty years of my emotional stability she will have to deal with this, too. It’s too early to worry about these things, I know, but somehow it’s the undefined combination of all this coming pain that creates the deep sadness.