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.
Richard Taylor, America's most famous Alzheimer's activist, lives in a typical middle-class, single-occupier suburb in Houston, Texas. Taylor, a psychology professor, was 58 years old when he was diagnosed with Alzheimer's-type dementia in 2001. Soon after that, in order to better understand what was happening to him, he began writing on a daily basis. These documents became the book "Alzheimer's from the Inside Out."
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.
'After the Diagnosis I Cried for Three Weeks'
SPIEGEL: You mean after the diagnosis?
Taylor: Yes. When they said: "It's dementia, probably of the Alzheimer's type." That was a real shock. I ran out into the garden and cried so loudly that Linda said: "Come inside, all the neighbors can hear you." I cried for three weeks. Smart Dr. Taylor didn't know what was going on. I got depressed. I stopped working and driving my car. I just hung around the house. I thought I'd die very soon. I read that statistically speaking Alzheimer's patients have a 10-year life expectancy from the moment they are diagnosed.
SPIEGEL: In actual fact, your illness is progressing surprisingly slowly. How do you explain that?
Taylor: I was diagnosed at an extremely early stage. I didn't even have this They only invented it later. They call it mild cognitive
Taylor: Impairment. Exactly. That again goes to show that only when people make up words for something it becomes real in their minds. Looking back I think that my father also had dementia but I didn't call it that back then. He was just old and senile.
SPIEGEL: Even if you were suffering from a very early stage of dementia at the time, it's amazing how few symptoms you exhibit today, almost 10 years later.
Taylor: Yes. Maybe that's because I have quite large cognitive reserves, because I had a huge vocabulary and was always an excellent speaker. I'm open-minded. I think more about thinking than most people do. That helps me to fight against the symptoms. It also helps me covering up a lot. But even now as we're speaking, I notice that I am answering questions differently than I would if I only could.
Taylor speaks slowly and slightly sluggishly, yet his grammar is perfect. He has unwrapped the cake, cut himself a slice and started to eat. Is that impolite -- a consequence of the dementia or just standard practice in Texas? Taylor says his wife is still sleeping because she's a midwife and worked the night shift at the hospital. He apologizes that coffee will have to wait until she's awake because he never operates the coffee machine himself.
SPIEGEL: It's truly remarkable. You've written a book, you travel around lobbying for Alzheimer's patients and giving speeches. You speak completely normally. So what is the problem?
Taylor: I've had doctors tell me: "I just listened to your speech. You can't have Alzheimer's." For them it starts with the fact that I don't look like somebody in a home. So I say: "Did you hear me speak 12 years ago? If you lived with me you'd know that I put the remote control in the freezer and forget to close the front door behind me when I go out. I almost burnt the house down a couple of times. I said to myself that I wouldn't cook any more, but then I did so anyway. That's why there are no knobs on the stove.
SPIEGEL: Because you forgot that you didn't want to cook anymore?
Taylor: "Forgot" is the wrong word. It implies that something has disappeared. In reality it's still there but you can't get to it. It's a lack of awareness and consciousness.
Linda Taylor has now got up. She switches on the coffee machine and cuts the cake into slices. Because she has a little time, she sits down with us. She knows strangers often can't believe that her husband is sick.
Linda: Has he told you what happened at Christmas yet?
SPIEGEL: No. What happened?
Linda: (To Richard) Tell her!
Taylor: I needed a part for my computer. My son had promised to get it for me but kept putting it off, so I simply went out for it. I just headed off somewhere.
Linda: It was Christmas Eve! It was already dark outside. Everywhere was closed and it was freezing out. Suddenly he was gone. We all ran outside. We called out his name and knocked on everyone's door to see if he'd talked his way into someone's house. In the end half the neighborhood was looking for him.
Taylor: At some point my son was in his car next to me, saying: "Hey, Dad, get in. I'm taking you home." When we arrived, all the neighbors were standing around. I didn't understand anything. I came into the kitchen and my wife asked me where I'd been. I told her I had just wanted to buy a part for the computer. Then she started crying. Because she was cutting onions, I said, "Wow, those must be the strongest green onions I've ever seen." But that made her cry even harder.
'Alzheimer's Changes Everything: Intimacy, Trust, Responsibility'
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.
'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.
'Other People Just Think Alzheimer's Sufferers Have Nothing to Say'
Taylor: In any case, Alzheimer's doesn't really affect your intelligence. It just affects the ability to express your intelligence.
SPIEGEL: But that fact doesn't really make any difference to the people around you, does it?
Taylor: I'm still committed, witty, and charming, even though I can't spit out all the facts like I used to. But as soon as people know you have Alzheimer's, they think you don't have anything to say anymore.
SPIEGEL: What happens?
Taylor: My daughter-in-law and I once accompanied my wife to the hospital for a back operation. The doctors knew us and were aware that I had Alzheimer's. Once Linda's anaesthetic had kicked in, they automatically began directing all their questions to my daughter-in-law. It was effectively as if I wasn't there. At one point my daughter-in-law had to go out briefly and a new doctor who didn't know me came in. He asked me all sort of things, and we had a normal conversation. There were no surreptitious looks to someone else to check whether I was speaking the truth. When I realized that, I felt tremendous. It felt so good to be treated like a regular human being.
SPIEGEL: Do you often notice this contrast?
Taylor: Constantly. I once went to the hairdresser and my brother was with me. We chatted, and the hairdresser said that her father had recently been diagnosed with Alzheimer's. I said, "I have Alzheimer's too." Whereupon she turned to my brother and asked him: "How does he want his hair cut?"
SPIEGEL: How did your colleagues at the university react when they found out about your diagnosis?
Taylor: They felt helpless. They stopped calling. They don't want to put me in an embarrassing situation -- so they say. Perhaps they're scared I might pull down my pants and pee on the floor at a reception.
SPIEGEL: And your friends?
Taylor: They stopped calling too. I phoned them and asked how come we hadn't had lunch in months. They said they didn't know what to say to me anymore. I said, "just say 'hello." To which they replied, "but what would we talk about?" And I said, "why don't we talk about George W. Bush, world peace, global warming, or your relationship with your wife or whatever we used to talk about?"
SPIEGEL: What did they say to that?
Taylor: "I didn't know you were still interested in things like that." They already see me as fading away. They expect me to evaporate in front of their eyes. But I'm still all an ocean.
Taylor asks me if he is answering the questions well. He is struggling to retain his composure as he describes how everyone has broken off contact. Over the course of the last hour, his voice has become more and more slurred. We decide to call it a day, and arrange to meet again in the morning. When Taylor opens the door the next day, he has traded his professor's outfit for casual clothes.
SPIEGEL: Good morning. How are you?
Taylor: A little tired, thanks. I worked on my new book until 3 o'clock in the morning. It's going to be called "75 Questions about Alzheimer's." My brother is organizing it. He sends me three questions a day, and checks what I write. But I'm worried because I don't know how long I can continue.
SPIEGEL: Why do you say that?
Taylor: My ability to express myself has diminished. I'm fighting against these memory problems. My thoughts are so disorganized that I quickly forget what I wanted to do. I even find it hard making telephone calls. I can see the numbers, but I can't dial them in the right order on the phone anymore.
SPIEGEL: But you can still write, can't you?
Taylor: That's easier. But if I didn't have dictation and spell-checking programs I would have been completely lost a long time ago.
SPIEGEL: Which of the 75 questions did you address yesterday?
Taylor: I can't remember anymore, but I could check.
Taylor goes into his small office, which is packed with computer equipment, books, photos and awards from both before and after he was diagnosed with Alzheimer's. He doesn't come back. About a quarter of an hour passes. I start wondering if he's forgotten about me.
SPIEGEL: Richard, where are you?
Taylor: Did I keep you waiting? I looked up what I wrote. Yesterday's questions were about loneliness.
SPIEGEL: Do you often feel lonely?
Taylor: Constantly. I feel a sadness inside myself that I don't think will ever go away again. I can sense that the gap between myself and others is getting wider every day.
SPIEGEL: In what situations are you particularly aware of it?
Taylor: I can feel it now in the pit of my stomach as we are talking about it, or when I'm with people who are all talking and the atmosphere is great, but I can't follow the conversation. My mind keeps wandering. I forget what I wanted to say or comment on and I only remember it minutes later when they've moved on to something else. Then I blurt it out and everyone stares at me. It's as if they're holding up a sign that says: "You've Got Alzheimer's"
'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.
'Tests Show Brain Still Active in final Stage of Alzheimer's'
SPIEGEL: And is that hope confirmed?
Taylor: Yes. EEGs conducted on people in the final phase have still measured brain activity. For instance, if you stroke their shoulder, there is an answer. Is that consciousness? I have no idea. But I think there's something there. I have to believe it. If not, we'd be zombies.
SPIEGEL: Yesterday Linda said she'd never put you in a home. But what if you're wandering around disorientated, and become a danger to yourself?
Taylor: Then I'll have to be what we call institutionalized. I know that. Linda is strong-willed. She thinks she'll manage everything. But I'm a realist. She's younger than me. When I'm in a home, she can start a new life without me. She can always come visit me.
SPIEGEL: How do you imagine life would be for you there?
Taylor: The experts say I'll be playing bingo, doing a little arts and crafts, singing songs. That's what will make Richard happy. Instead of helping me to get the best out of the life I have. But for that they'd have to know me. People with dementia have enormous resources if only you tap into them. There are amazing Alzheimer's choirs and rhythm groups. Some learn "bam, bam, bam," others "babam, babam," and they have great fun.
SPIEGEL: Would you be interested in something like that?
Taylor: OK, it's hard to imagine that right now. Today I listen to Mozart and I still play my banjo, but what if the alternative was getting my wheelchair parked in front of the TV? That's the problem: We need people who stimulate our creativity. What we get are cleaning personnel.
SPIEGEL: What do you think about the notion that you may one day be tied to your bed and left alone?
Taylor: It makes me shit scared. But maybe as the person I will be then I won't be scared any longer.
Linda Taylor comes in to say hello and she leaves some food out, before going off to work. She says she's scared that Richard will no longer be able to fly on his own soon, even if he's brought to the gate. That means he won't be able to travel to give speeches. Taylor has said that the speaking appearances were the source of his will to live. They pick up where his university career left off.
SPIEGEL: How did the university react when they found out you had dementia?
Taylor: I kept it secret for a couple of years. I asked two students to hold up a card if I went off at a tangent. I told them it was an experiment. But then I had a lot of difficulty with the complicated grading system. I mixed up all the grades. Eventually I decided that it would be better to retire, so I told the deans .
Linda: They made you.
Taylor: What did you say?
Linda: You wanted them to give you an assistant but they didn't want to. That's why you had to go.
Taylor: My God, I think you're right. I've been telling a different story for ages. But you're right, damn it! That's how they played me around. They fired me. Oh, damn it.
SPIEGEL: Didn't you expect it?
Taylor: Everybody acknowledged that I was an excellent teacher. I had just been voted Teacher of the Year for the second time. But suddenly all that didn't mean anything anymore. It was boom, that's it. No more money, no more teaching. No more job. Just like that.
SPIEGEL: That still hurts, doesn't it?
Taylor: You know, I've now found something new to live for: Alzheimer's. I have 13,000 people on my mailing list. They write to me from all over the place.
SPIEGEL: What do you hope to achieve?
Taylor: I ask simple questions. For example, why does my government spend twice as much on Aids research than on Alzheimer's? Because at some point people with Aids started kicking up a fuss. That's what people with dementia should do.
SPIEGEL: You wouldn't have become as famous without Alzheimer's.
Taylor: That's true. I became one of the movement's first voices. In that respect, it all has its advantages. Even so, I'd still rather live without Alzheimer's. Whenever I can't find a word, I get petrified. I wonder what I'll feel when I no longer have words. Sometimes, especially when I'm tired, my sentences sound to me as if I'm throwing dice in the dark. I know I've thrown the dice because I can hear them rolling around the table, but I don't know what I rolled because I'm in the dark.
SPIEGEL: Will you remember our conversation tomorrow?
Taylor: Not specific details. I will know that we talked.
SPIEGEL: Dr. Taylor, thank you for talking with me. I wish you all the best.