Sunday August 06, 2017

Living with dementia: Gerda Saunders tells her story before she forgets

After spending years documenting her mental decline and daily struggles of living with the disease, she has written a book called Memory's Last Breath: Field Notes on My Dementia.

After spending years documenting her mental decline and daily struggles of living with the disease, she has written a book called Memory's Last Breath: Field Notes on My Dementia. (Hachette Books/Peter Saunders)

Listen 45:03

As a child, Gerda Saunders's quick and curious brain made her special in the eyes of her teachers and her parents.

As an adult, she made sense of the world by learning more about how it worked. She earned a Ph.D in English, wrote short fiction, and served as the associate director of gender studies at the University of Utah.

She was, in her own words, "a woman who lives and dies by her rationality." So when doctors diagnosed her with dementia just days before her 61st birthday, she coped with the news the best way she knows how — by writing.

"For me, dealing with my big issues in life has always been through sort of analysis and observation, and very often accompanied with writing. So for me, writing these things down and thinking about how they would affect my life was a coping mechanism that made it easy for me."- Gerda Saunders

Saunders is now 67. After spending years documenting her mental decline and daily struggles of living with the disease, she has written a book called Memory's Last Breath: Field Notes on My Dementia — both an anthropological investigation of her own condition and a profound meditation on memory, identity and what makes a life worth living.

Following her diagnosis in 2010, Saunders and her family created a plan to pursue doctor-assisted suicide in Europe when her condition deteriorates to the point where she is no longer capable of leading what she considers to be a worthwhile life.

"The ability to be a self-determining human being, to have ideas, to have conversation, to have thoughts about your future — is the essence of what I think of as a worthwhile life," she says. 

As her dementia progresses, the biggest struggle for Saunders is interacting with the practical world around her while remaining in the present. Her advice to relatives, coworkers and caregivers of those facing dementia is to "grant them their fantasies," for example, playing along with them when they revert back to their childhood.

"There is no function of telling somebody that they're actually living this rather bleak reality if they have a happy place to escape to. And for some people it will be stories or fantasy or music, but allow people that escape," she says. 

"Don't make them conform to your rational sense of the world."

To hear Susan Bonner's interview with Gerda Saunders, click 'listen' above. You can watch a video series about Gerda by Video West in Utah here