MELISSA BLOCK, HOST:
Gerda Saunders knew something was wrong. 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 titled "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.
GERDA SAUNDERS: She said, it looks like you may already have been dementing.
SAUNDERS: Dementing. Because I - you know, I'm involved with words. I have always been. It just struck me in that moment really as funny in a way that there is this verb that I never thought could be derived from the noun dementia. Suddenly, it felt like this was something I was - there's a word for it. You know when you participate in an act - I'm sorry, I can't remember.
BLOCK: Yeah. Yeah.
SAUNDERS: But when you are sort of almost like guilty of participating in an act, I mean, in the way that we speak about it in, you know, in colonialism that you...
SAUNDERS: ...Complicit is the word I'm thinking - I'm complicit in something - yeah? - that my body is - and my head is doing something in a verb form which means, like, I'm actively engaged in doing this.
BLOCK: You describe throughout the book some of the daily frustrations or failures with relatively simple tasks that you're confronting. And one of them is what you call the typical progression of a Gerda phone call. Could you read that progression for us?
BLOCK: On page 81.
SAUNDERS: (Reading) One, find the phone number. I no longer remember any phone numbers except now and then my own. Is it in my electronic or paper address book? Two, if electronic, open email to search contacts. Three, forget why email is open. Start catching up with unanswered messages. Four, eventually remember the original intention sometimes. Five, retrieve number, go to the phone, hear the message beep. Six, retrieve messages, return urgent calls. Seven, start cleaning the counter where the phone is plugged in. Eight, damn, who was I going to call again?
BLOCK: What do you think the process of writing about your early onset dementia has meant in terms of understanding your identity now and how it's shifting?
SAUNDERS: 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 brain is being eaten away. So what am I now? What will I be? What is my identity? And, you know, 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 the time when I couldn't understand anything anymore.
BLOCK: I'm wondering how your diagnosis of dementia has altered your relationship with your husband, Peter. You've been together for so long, since you were 17.
SAUNDERS: Yes. It really - 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 is 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, like, I'm getting worse at it every day. His responsibility is mounting. But we do talk about it. And I feel that we are - our relationship is deeper than it's ever been.
BLOCK: I think people listening to you, as eloquent as you are, will have a hard time wrapping themselves around the notion that you have dementia. You do not sound at all impaired.
SAUNDERS: Yes. And that is true. If you are in a conversation with me like this where there are no distractions, I can hold together, you know, 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, we - Peter and I have to go somewhere. We have an appointment, and I have to get ready. And I get sidetracked 10 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's really thinking for two people. He's the one who reminds me and in - always in the kindest way about what I was supposed to be doing.
BLOCK: You've had many conversations with your family about the end of life and what you want that to be, how you want that to look and go and what they want from that as well. Where have you ended up on that?
SAUNDERS: We worked out a plan for me in 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 will be possible 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 we have a plan set up through a lawyer. And my doctors are all aware of this and have my wishes in my advanced medical directives about this. And I ask 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.
BLOCK: And it does - it feels like a gift to you to know that?
SAUNDERS: It does. It's a huge gift.
BLOCK: I worry that this has been exhausting for you, this interview.
SAUNDERS: But in a lovely way. I enjoy being able to have these conversations while I can because I know that possibly in a year, I might not be able to do it.
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BLOCK: Gerda Saunders' memoir is titled "Memory's Last Breath: Field Notes On My Dementia." Gerda, thank you so much for talking with us.
SAUNDERS: Thank you, Melissa. It's been wonderful. Thank you for your wonderful questions.
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