Interview with Alzheimer Sufferer: 'You Turn Into a Person You Don't Know Anymore'
Part 3: 'Alzheimer's Changes Everything: Intimacy, Trust, Responsibility'
Psychology professor Richard Taylor. The American academic has written about his life with Alzheimer's.
SPIEGEL: At least you can still talk about it.
Taylor: Yes. That's because I keep asking Linda to tell me what happened. Even so, I'm no longer the partner I used to be. Linda looks after me but I can't look after her. That makes me sad. But I still feel comforted and supported and loved.
SPIEGEL: In what way does having Alzheimer's change relationships?
Linda: It changes everything: Intimacy, trust, responsibility.
Taylor: Of course we had the romantic idea of traveling together when we got old. We still act as if we had gone on the same journey together. In reality, we're on separate roads. And mine is a dead end.
Linda and Richard are used to talking openly with one another. Linda says the illness has made her husband impatient and self-centered. He distributes his lists of tasks throughout the entire house. It's hard trying to remember things for two people. And they argue constantly about money because he doesn't understand limits anymore. And as hard as she tries, she never feels that she has done enough for him. As she's talking, her husband gets up for no discernible reason and walks out of the room.
SPIEGEL: Where did he go? He's not coming back.
Linda: He definitely didn't go outside.
We can hear somebody walking around and rustling papers in the room next door.
Linda: What are you doing, honey?
Taylor: I'm looking for the reporter.
Linda: She's in here. She's waiting for you to come back so you can continue.
Taylor: Oh. I see. What would you like to see? My pills? Here! (Emptying a box of pills) That's for in the morning, that's for in the evening. There's fish oil, vitamin B ...
SPIEGEL: And the red ones?
Taylor: I don't know. They must be important otherwise they wouldn't be red. I take an antidepressant, but only a low dose. I've never tried ginkgo. For a while I took incredible amounts of vitamin E. That can't do any harm. I also take something to lower my cholesterol levels, although I don't know why. They recently also started prescribing a Parkinson's drug against dementia. I tried it, but it didn't agree with me. (He pours the pills back into the box, all mixed up)
SPIEGEL: Don't you have to take them in a specific order?
Taylor: No. I just take a handful. To tell you the truth, I don't think they do much.
SPIEGEL: Because your disease can't be cured and little can be done to treat it?
Taylor: It's not a disease. I call it a condition. Dementia simply doesn't fit our concept of disease. But dementia has become medicalized. Doctors prescribe pills to treat it. Doctors own it and people let them own it. But I always say: "We don't need pharmaceuticals, but socio-ceuticals." When making out a prescription, doctors should write down the telephone number of someone else in a similar situation and say, "call him. Go and meet him. Then you'll see that people with dementia are normal. They are just like you."
SPIEGEL: What do you do to combat the symptoms?
Taylor: I try to eat sensibly. I exercise. But the most important thing is to stay in touch with people. My granddaughter comes to visit me every day. We draw or play on the Wii together. If I play cards with her, I sometimes get extremely angry if I forget the rules. But she takes it very well. Small children accept so many things as being normal. That's what was so nice when we still had Annie, our dog. But she died of old age.
Linda: That dog is the biggest bone of contention for us. I realize that Richard is desperate to get a new one. Annie loved him and followed him everywhere, but it got too much for me. When she got old, she peed everywhere. She needed to go outside, but he didn't notice. The house started to smell. To be honest, I think Richard saw a bit of himself in Annie.
Taylor: Woof, woof! (he laughs.) My wife allowed me to have frogs and fishes instead. But that's not the same thing. Do you want to come and have a look?
A door in the kitchen leads out to a small garden. Taylor is a passionate gardener but he says he lost track of what needs doing in the garden a long time ago. A terrarium containing frogs and lizards stands in a corner. A number of dead aquarium fishes lie shrivelled on the grass, in front of the tank.
- 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'
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© DER SPIEGEL 9/2010
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Reproduction only allowed with the permission of SPIEGELnet GmbH
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