Interview with Alzheimer Sufferer: 'You Turn Into a Person You Don't Know Anymore'
Psychology professor Richard Taylor was diagnosed with dementia at age 58. Since then he has gone on to become a passionate advocate for the humane care of those with Alzheimer's. He talks about how his life has changed and how even the best-intentioned people no longer treat him like a human being.
Psychology professor Richard Taylor. The American academic has written about his life with Alzheimer's.
Former psychology professor Richard Taylor was diagnosed with dementia at the age of 58. Since then he has written a book about his experiences and gone on to become a passionate advocate for humane care of those with Alzheimer's. He talks to SPIEGEL about how his life, his relationships and his perception of the world have changed.
The book's publishers say that Taylor's disease is only advancing slowly and he remains a sought-after speaker at specialist conferences. However all the replies to SPIEGEL e-mails sent while setting up this interview came from Taylor's wife, Linda. Which is why I wondered how Taylor would be during our interview and set aside two days for it, just in case.
When I arrived at 10 o'clock in the morning, Taylor himself opened the front door. He is tall -- nearly 2 meters (well over six foot). With his glasses, gray hair and beard, blue-and-white-striped shirt and jacket, he looks a lot like a picture-book university professor.
SPIEGEL: Good morning, Dr Taylor. It's good to see you.
Taylor: Hello. Good morning. Come on in. Thank you for coming such a long way to see me. Are there no people with Alzheimer's in Germany that you could have interviewed instead?
SPIEGEL: There are about 1.3 million, but none of them has written about living with Alzheimer's as vividly as you have.
The house is immaculate: No yellow Post-It notes on the cupboard doors, no signs to the toilet or the bedroom of the sort one often sees in the apartments of people with severe dementia. Taylor offers me a chair by the table in a dining room with an open-plan kitchen. I notice there are no knobs on the cooker. He places a wrapped-up cake on the table, as well as a knife and two napkins.
Taylor: I think everyone with dementia should try out writing. I started writing because I was petrified that I would wake up one morning and a curtain would have fallen down separating me from the rest of the world. I thought that if I read every day about what I'd done the day before I would know whether I was still okay.
SPIEGEL: You were not sure about that?
Taylor: No. Because you lose your memory. Step by step, you turn into a person you don't know anymore. And the one you knew disappears.
SPIEGEL: Are you constantly aware of this?
Taylor: Yes. You can't simply repress dementia. You can't ignore that you're confused and constantly forgetting things. After all, that's what you are.
SPIEGEL: Was it you who first noticed something was wrong?
Taylor: Linda noticed. She told me that I got lost while driving, that I would leave my coat behind and that I suddenly started arriving late for things. That worried me. I wanted to know what was going on. But it took a year before I was diagnosed. The doctors take their time carrying out lots of tests. But the uncertainty was like living in purgatory. Hell came afterward.
- Part 1: 'You Turn Into a Person You Don't Know Anymore'
- Part 2: 'After the Diagnosis I Cried for Three Weeks'
- Part 3: 'Alzheimer's Changes Everything: Intimacy, Trust, Responsibility'
- Part 4: 'One Day I Will no Longer Know How to Express Love'
- Part 5: 'Other People Just Think Alzheimer's Sufferers Have Nothing to Say'
- Part 6: 'I Realized I Could no Longer Control my Feelings'
- Part 7: 'Tests Show Brain Still Active in final Stage of Alzheimer's'
© DER SPIEGEL 9/2010
All Rights Reserved
Reproduction only allowed with the permission of SPIEGELnet GmbH