In 'Memory's Last Breath' An Academic Confronts DementiaGerda Saunders was a university professor when she learned she had early-onset dementia. Now, she's struggling to define herself anew as her defining characteristic — her intellect — begins to fail.
She kept getting confused, losing her place in lessons at the University of Utah, where she taught. And then, just before she turned 61, Gerda Saunders was given a diagnosis: She has early-onset microvascular dementia.
Saunders and her husband Peter are South African; they emigrated to the States back in the 1980s.
Now, at age 67, Gerda Saunders has written a memoir, Memory's Last Breath: Field Notes on My Dementia. And she remembers vividly what her "rather blunt" neurologist said when she gave Saunders the news. "She said, it looks like you may already have been dementing. And because I'm involved with words, I have always been, it just struck me in that moment, really, as funny in a way that there's this verb that I never thought could be derived from the noun dementia. Suddenly it felt that this was something I ..." Saunders grasps for the word she wants. "When you are sort of, almost like guilty of participating in an act, in the way that we speak about it in colonialism, that you are — complicit is the word I'm thinking of. That I'm complicit in something that my body and my head is doing something, in a verb form, which means I'm actively engaged in doing this."
On what it's meant to write about her dementia
Certainly, my whole life path was determined by the fact that I had a good brain to start with. I was very fortunate. And now this big brain is being eaten away. So what am I now? What will I be? What is my identity, and what does it mean to live with an identity that's eroding all the time? I felt a strong feeling to understand this disease before a time when I couldn't understand anything anymore.
On how her diagnosis has altered her marriage
It has a constant and daily effect on our relationship. And I am more convinced than I've ever been in my life that Peter loves me until the day I die. Because he's so tender and loving, and just always there for me. And it's hard for me to know that I'm not fully reciprocating. You know, my mind drifts. I'm not good at doing my share of the household, I'm getting worse at it every day. His responsibility is mounting. But we do talk about it, and I feel that our relationship is deeper than it's ever been.
If you are in a conversation with me like this, where there are no distractions, I can hold together a framework of concepts, and speak within that framework. Where you see, really, some kind of craziness is when I interface with the world. I have severe attention deficit disorder. So I see something in front of me, and that is the thing I interact with. You know, when Peter and I have to go somewhere, we have an appointment, and I have to get ready — and I get sidetracked ten times in minutes, you know, where I go to fetch something, or I go to comb my hair. It's a very exhausting way to get through a physical day. And it's incredibly exhausting for Peter, too, because he is really thinking for two people.
On talking to her family about the end of her life
We worked out a plan for me and my family whereby I would go somewhere where I could find a legal assisted death. At the moment, it does not look as though that would be possible for me in the United States, so that means we would have to go to another country. And so we have tried to financially provide for that possibility, and also emotionally prepare for that possibility with my family ... And I asked this gift of them, to do this for me. It is such a comfort to me, to know that my family love me enough to want to give me this gift.