Q&A: Gerda and Peter Saunders on Personal Identity, Dementia

For Gerda Saunders, much about life has changed since she was diagnosed with cerebral microvascular disease, a precursor of vascular dementia, in 2011.

Following her diagnosis at the age of 61, Gerda retired from her role as associate director of gender studies at the University of Utah. As her condition progressed over the years, she experienced a gradual loss of her own sense of identity. But amid the loss, the love and companionship between her and her husband Peter Saunders, whom she first met more than 50 years ago, has remained a constant. The Gerda That Remains is a documentary feature film that tells their story.

In a Being Patient LiveTalk, the couple reflects on Gerda’s sense of self, her relationship with loved ones, and their partnership in living life with dementia. Read an excerpt of the interview below, and watch the full interview here:

Being Patient: There are so many poignant moments in the documentary, and Gerda, you mentioned feeling that your former self is being “scraped away.” Can you tell us a little bit about what you mean by that?

Gerda Saunders: We were very social in the sense that we always invited people to our house. I really made all the food and sometimes, I would do it over a period of two weeks. Now, I somedays cannot make a cup of coffee.

[In one instance], we’d invited the kids over and when they got there, I realized I’d forgotten to actually cook the food that I’d made. It was frozen. From that day onward, which is probably more or less eight years ago, we’ve not had a meal [for family gatherings] at our house for which I was responsible …

Peter Saunders: I’ve got to say that Gerda cooks a lot at home. She makes lunch, which is our big meal of the day, and I make various kinds of salads for the evening. We eat a lot of our own home cooking. As long as she can make a meat pie, I’ll stick with her.

Gerda Saunders: The definition [of my core] was that my brain worked well, which gave me many opportunities in my life with my teaching and other jobs that I’d had … I am so sad very often when I’m with my grandchildren and I cannot have the kind of conversations with them that I had with my own children about astronomy, about plate tectonics. [Those topics are like metaphors] of how I feel about life, so I cannot convey that to them in a way that I could to my children.

It affects my relationship with them. From my perspective, it feels like a diminished relationship, compared to even the relationship I had with my oldest grandson when I could still do things like that.

Being Patient: Peter, what are some of the major changes that you’ve noticed over the years?

Peter Saunders: She gets anxious very quickly. If there’s a lot of things happening at once, then she gets very frustrated and you can see she gets very nervous. The biggest change is the sadness that I can see because of a loss of independence.

A week before last week, we went to Las Vegas for a few days, and that’s her favorite place. From the hotel, there is a bridge across the road to a shopping area where she cannot get lost. So she can walk there. She can go and have food. She can have some coffee, and she doesn’t need me at all. That gives her [the sense of] some independence.

And funnily enough, she fumbles a lot and I think that’s part of the dementia. She drops things and gets embarrassed.

Gerda Saunders: I want to mention one thing, and that is that I have huge difficulties with not being motivated, or apathy. I get negative feedback from my environment all the time. I try to do something, [and] I do it wrong. Some mornings, after things like that [happen consecutively], I just say to Peter, ‘I got to go sit in my bed and listen to my audiobook. I just need to withdraw from the world.’

Being Patient: I appreciate the honesty that the two of you share with one another. Peter, you don’t keep things from Gerda. Tell us a little bit about that.

Peter Saunders: We do share things with each other, and try not to soften the blow. In some ways, we try to be circumspect about how we approach the issue, but I’m very clear with her about what she’s going through.

“She always used to do everything for me,
so in some way, I feel that I’m able to
repay that by being there for her.”

Being Patient: Gerda, I met you a few years ago, and I was so drawn in by this documentary, because it really proved the importance of a partnership. It’s a different journey when you have someone to walk down the path with, isn’t it?

Gerda Saunders: Most definitely, because if I were on my own, I would be in some care [facility]. I could not live [on] my own. Beyond that, I really think we are soul friends after 54 years of knowing each other … So many people I know are single when they’re older, and I can see how wonderful my world is, which is why I am not allowed to not be joyful.

Peter Saunders: We have been together for a long time. I’ve got a lot of respect for her. Of course, I love her a lot, so it’s nice to do things together.

Now, it’s changed a lot and she’s not as independent as she used to be. I help her 100 times a day with things like telephone calls, computer, budget and everything. But for me, it’s nice. She always used to do everything for me, so in some way, I feel that I’m able to repay that by being there for her. And of course, she has to live with my humor. I joke a lot about her … and that helps as well because it brings a little light to our life.

The interview has been edited for length and clarity.

Contact Nicholas Chan at nicholas@beingpatient.com