Interview with Alzheimer Sufferer 'You Turn Into a Person You Don't Know Anymore'
Part 4: 'One Day I Will no Longer Know How to Express Love'
SPIEGEL: A moment ago we were talking about your relationships. Why exactly do you want another dog?
Taylor: I am so lonely. My grandchildren go to school, Linda goes to work, and I am confined to the house. Dogs don't care if you have Alzheimer's. They love you unconditionally. I wish I had a being that would carry on accepting me even when I can no longer remember my own name, when I'm wearing diapers and can only mumble.
SPIEGEL: Are you afraid that the people around you will abandon you?
Taylor: The promise that Linda and I once made to one another is based on our love for each another. But because I am losing the connection to my past, I can no longer produce the feelings that are based on the past. One day I will no longer know how to express love. Bit by bit, everything that connects us will disappear, and I suspect that I won't even miss it. But Linda will.
SPIEGEL: Do you think you will recognize when things start going downhill?
Taylor: I often hear that one turning point is when you forget the name of the person you're married to. But I think you simply forget the name, not the person. I will still have the need to be loved. I will simply lose the ability to express it.
SPIEGEL: How has the relationship to your children changed?
Taylor: They just take things off your hands and say: "Here, let me do that." It's well-intended, but there's no please or thank you anymore, no "may I?" or "would you like?" It's always: "Let me do that."
SPIEGEL: Do you have difficulty asking for help?
Taylor: Well, everyone else is always so busy. When I couldn't drive a car anymore, I began writing lists of the things they should get for me or where I wanted to be driven. Eventually I began writing the date on my notes because I wasn't sure if I could believe Linda when she said I was asking her for something important like ketchup or a cracker for the first time. Without a car or a wallet I can't even go and buy a packet of butter on my own anymore.
SPIEGEL: Do you miss going shopping?
Taylor: You bet. The other day she took me to the supermarket with her for the first time in months. I remember how great that felt: being free to just go around and put whatever I wanted into my basket. It was an incredible feeling of delight.
SPIEGEL: Do you feel like others are making decisions for you?
Taylor: Sure. Imagine if someone said to you: "Give me your car keys, your money, simply everything." I complained when Linda had the locks changed so they couldn't be opened from the inside like before. I don't want to be locked in. But she's probably right. Everyone treats me like a kid. Sooner or later I guess I'll become my wife's son. I'm incredibly scared of that. I always try to wait up until she comes home from work at night ...
Linda: ... and when I arrive, all the lights are on, the television is blaring out at full volume, the front door is wide open, and he's lying in bed still wearing his glasses.
Taylor: Then she looks under the blankets to check if I've still got all my clothes on. (He laughs.)
Linda: I did that last night. Is that why you mentioned it?
Taylor: I don't know. Did you?
SPIEGEL: Does that surprise you?
Taylor: Greatly. I constantly wonder how long I've got left. That's why I took part in a study on Alzheimer's at the university at the beginning. In one of the tests they give you, you have to put playing cards in piles. It's up to you to find out what the rules are. But halfway through the test they change the rules without telling you. Suddenly you get, "Wrong! Wrong! Wrong!" Healthy people eventually work out the new rule, but I couldn't make the switch. I started to cry because I got "wrong" so often.
Linda: And then he practiced.
SPIEGEL: You practiced the tests?
Linda: The clock test.
Taylor: It's a dumb test.
Linda: They do it every time: They ask you to draw a clock showing ten to or ten past the hour. So he practiced: Ten to, ten past.
Taylor: I don't need to do those tests. I already know that I have problems.
Linda: They were important for me because I couldn't believe he had Alzheimer's. It wasn't until the doctor explained the test results that I understood.
SPIEGEL: What role does intelligence play?
Taylor: Most people don't know their IQ. But it was important to me. It was a part of my identity.
SPIEGEL: In your book you said you felt like you were plunging into the abyss after the test. "My IQ has fallen from 148 to 114. My processing speed is slightly faster than a concrete brick, and my self-awareness is close to that of a lizard." You can hear the humiliation in that.
Taylor: If you are a psychologist, and you are looking at psychological results, those aren't just numbers to you. Those are you. You can see yourself and your numbers keep going down. Even though it was just a small drop, it hit me hard.
SPIEGEL: From 148 to 114? Hmm.
- 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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