Notes on dementia: Gerda

Gerda Saunders is a scholar, an author and an advocate with a PhD in English Studies. When she was diagnosed with vascular dementia in 2011, she set out to investigate it with the same critical eye that was so essential in her career. In 2017, she released a memoir “Memory’s Last Breath”, which tells the story of her life as a deeply intellectual person who faced a diagnosis that slowly erodes the brain.
Gerda lives in the USA with her husband Peter and writes a blog about her life, meanwhile advocating for awareness around dementia.

Can you tell me about yourself? 

My name is Gerda Saunders. An important thing [to know] is that I am an immigrant to the United States from South Africa.
We came to the USA in 1994. I had two young children and my husband Peter, of course. [It is] one of those transitions one makes in life when you face a huge challenge, but you find a way to work through it and get the best of this new life that you have. It translates directly to [my] dementia diagnosis.

My last job was working at the University of Utah, and teaching English and Gender Studies. I did a lot of study in psychoanalysis. The reading I did there helped me with understanding my [own] dementia and understanding that life is always a challenge. Having dementia was not a different project than making meaning of a new life in a new country.

When I got the diagnosis, it was actually a relief; to have the diagnosis, to know why I have been acting uncharacteristically.

How does dementia affect your writing capabilities?

If you read my blog posts with a critical eye you will see that they all much or less are well formed. I believe they make sense as a narrative that I tell. But I don't spend much time on the spelling or accidental duplicate phrases. I am however tidier than I used to write. I write what is just in my head and on my mind. But I still look up art; the insides that I get on my dementia are through art. I always look at art and I store pieces of it that move me; almost inevitably they connect to something in my life.

I used to be a much more deliberate writer who knew where I was going to end with a piece before I started it, at least I had a strong notion. But I have let go of some insistence of perfection that you have to have when you want to be a published writer. I dont have the peer review pressure of having to publish things officially. I also got much more [in tune] with the flow of my mind.

And the reason for it, as I am sort of demonstrating… I can still talk, but I talk just about what is in my head. But when what is in my head has to interact with the actual real physical world, then I talk very badly and I get very confused. But as long as I stay in my head with one person or two people, [I can handle it].

The wondrous thing and what gives me joy about writing is that I can still do it. I can still have one on one conversations with people. But if you see me operating in the world where things are just happening, I get so confused.

Has dementia brought something positive to your life?

I have published one book early in my life, but then my life took over. I had 2 novels I was working on. When I retired, I realized I could no longer do the work, it was too big for me. I could not get my head around it. I abandoned it. But in place of it, a new opportunity arose. If I wrote about anything other than dementia, some memoir rather than one about my life with dementia, I would not have gotten published. I happened to have a disease in which there was suddenly an opening, where people realized they could talk about their [own] dementia. That sort of opened up a new, second career for me. It was not related to making money, but [it was] for pure pleasure. Of course there is also the agony of writing, but every writer wants to have that agony so they can complain about it. For me, this is something that occurred because of my dementia diagnosis. I will forever be grateful for that.

I heard people say that dementia made them think about life differently and made them humble. But I would rather have a working head than be humble. It is a source of irony for me that I was fortunate to be born with a brain that functioned so well in an academic setting. That was the thing where life just decided: “Okay, you have had your innings, that’s it, it's going down now.” But I also feel that I do not bewail it or resent it. I think I had access to a working brain for so long, for me to complain that now it is not working anymore – it would be utter hypocrisy. Why should I have a brain that not only worked well when I was young, but now has to work well till the day of my death? Why should I be so lucky?

But I am lucky in other ways with my dementia. I can be positive. I have people helping me to arrange my life so I can experience these joys. But there are many people who do not have that social or family support that I have. I am very grateful that I have that from my family. I just wish I didn't have to ask so much of them. it is not that I particularly ask it, but they give me all the support. It is an amazing thing to see how human beings can rise to an occasion: my family is doing everything one could ever hope for in a situation like this. I wish I didn't have to see it this way. Having a parent with dementia is a burden to them.

What advice would you give to people who want to create while living with a terminal illness?

Continue to make your life a form of art.

Whatever your passion is, arrange your life so that it can accommodate it. For me, writing is still a great joy, but I don't realistically get large chunks of time on it. The first thing I say to people, in order to do that, you have to first come to terms with the realities of your life. You have to know that with getting older and especially with dementia, you are much slower and you take a long time to do things. You have to trim your expectations on how you can do your art while having to live in the real world. 

How has caregiving changed you and your family?

I have [my husband] Peter helping me. He spends half the day helping me with things. And I want him to have a life. So we have simplified our lives to a point where we can say we only have a manageable amount of things to do in a day. With my dementia, it consists of one thing a day.

Peter has become so supportive; he changed his character from before I had dementia. He alway used to be a wonderful, kind and generous husband. But he used to not deal with things that interrupted his goals. He would get angry at people who would do that. He could not tolerate half heartedness from anybody. After I had dementia for a year or two, the children saw their father embracing this role of supporting me. They said to me: “What happened to dad? He used to get mad at certain things, but now he really doesn't.”

That is what he has done in order for us to continue having a life as joyful as possible. It is an incredible wonder to see that; that someone would do that for a person they love. And that goes for my whole family and my friends. Those are things I did not imagine to live out this way. I have always felt loved by my family and Peter, but I had more to contribute. I now have less to contribute and they still do it for me. That is a wonder. You can be in awe of it how you are in awe of a solar eclipse; that this is something human beings can do when they love.

I don't think that dementia is a terrible terrible thing to happen to one. But it is a terrible thing if you don't have love and support.

To get in touch with Gerda, visit her website:

To learn about her book “Memory’s Last Breath”, visit this link: