Interview with Alzheimer Sufferer 'You Turn Into a Person You Don't Know Anymore'
Part 6: 'I Realized I Could no Longer Control my Feelings'
SPIEGEL: Does that happen to you a lot?
Taylor: Yes, I often stand out now. For instance, my daughter once took me to the gate at the airport. There was a long line at the check-in desk but there was no-one at the first class counter. So I said pretty loudly, "Hey, folks: there are no rich people around. How about serving us in the meantime?" At first people thought that was funny but I just went on and on. I said, "don't worry, we'll clear off when the fat-cats come. After all, we know our place," or something like that. Suddenly my daughter turned to me and said in a very rough tone, "Dad, will you PLEASE shut up?" She'd never spoken to me like that in her entire life. I had an adult response -- and I started to pout. About half an hour later I asked her, " Shannon, why did you say that to me?" And she said, "you just wouldn't stop anymore. I've never seen you do that before."
SPIEGEL: Were you embarrassed?
Taylor: Very. I was ashamed and scared because I realized I could no longer control my feelings. You always think you're acting completely normally but this incident showed me that I had not the slightest idea what I was doing.
SPIEGEL: What if I asked you how you were yesterday?
Taylor: Well, I'd say something or other. But don't rely too much on it being the truth. (He laughs.)
SPIEGEL: You don't really find that funny, do you? Our self-perception depends on seeing ourselves as a continuum. We are our memories.
Taylor: Sure. That touches on a number of existential questions, the most important of which is: "Who am I?"
SPIEGEL: Are you still the same Richard Taylor you used to be?
Taylor: No. I'm the Richard that I am right now. We all change constantly. We just live with the illusion that we always stay the same. However, this illusion is shattered if you have Alzheimer's. There are four things that matter to me now. Firstly, you have to direct all your attention to staying in the moment. Secondly, you must err I can't remember exactly what the four things are anymore. They change from day to day. But people like to hear the same stories every time. For instance the one about the lace curtains. Did I tell you that one?
Taylor: When people ask me what it's like living with Alzheimer's, I always say it's a feeling like sitting in my grandmother's living room. I can see the world outside through her lace curtains. But there are large knots in the curtains and I cannot see through them. From time to time, a gentle wind blows the curtains and I can see a little more, and then the curtain swings back and I'm cut off from my memories again.
SPIEGEL: That's a beautiful image.
Taylor: I really fancy some liverwurst. Do you? I should have some delicious German mustard somewhere too. (He gets up and looks in the cupboard).
SPIEGEL: Perhaps one day you won't be able to swallow anymore, like many other Alzheimer's patients.
Taylor: Then I'll probably starve to death. I don't want a stomach tube. Never.
SPIEGEL: Have you considered suicide?
Taylor: Only theoretically. In reality people with dementia eventually lose the ability to kill themselves, and I would never want to delegate the right to kill me to someone else.
SPIEGEL: You often visit nursing homes. Why do you do that?
Taylor: Because they invite me to come and speak. One time a woman who'd heard me speak came up to me afterward and said, "I'm now going to go home and give my husband a hug. I haven't done that in years. I've become his caregiver, his nurse, and his housekeeper." But you know I go there mostly to confirm my hope that those are human beings in there.
- 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'