Thursday, August 19, 2010

Author Andrea Gillies on Her Mother-in-Law's Alzheimer's Descent

Rhonda:  This is exactly what I've been trying to say and some days cannot find the words. Excellent. Sent to me from a good friend knowing that I needed to read it and share with others I know who are experiencing the same.

Chris Watts
By Michelle Burford
Five years ago Scottish writer Andrea Gillies took in her mother-in-law, Nancy, who was then in the midst of Alzheimer's disease. Andrea thought she could simply nurture Nancy through her difficult passageway, but just weeks after Andrea moved into a Victorian mansion with her husband, Chris; their three young children; Nancy; and Nancy's ailing husband, Morris, the journalist encountered a much more cruel reality: Alzheimer's involves far more than memory loss or a little dementia. It's an illness that can rob you of your very identity.

In her new memoir, "Keeper: One House, Three Generations and a Journey Through Alzheimer's," Andrea tells the story of the crisis her family confronted -- complete with Nancy's dark moods, Nancy's unexpected rages and the gradual undoing of Nancy's grasp on reality. As her brain was pared away by the debilitating disease, Nancy, a former secretary and loving grandmother, no longer knew who she was or why she was with her family. The entire ordeal left Andrea with two questions: What exactly is the self, and does identity even exist without memory?

AOL Health: In your memoir, "Keeper," you explore how identity and memory are connected. What did you discover about identity as you cared for your mother-in-law, Nancy?

Andrea Gillies: I had always tried to hold onto the idea of myself as immutable, not possible to change. I thought that getting older was a process of adding on to who you are. So it was terrifying and educational to come across a situation in which Nancy's self was being whittled away by a disease. I've had to learn that if we have souls, they must be different from our conscious selves -- and thus, they're not something we know about. Through disease, Nancy had become a different person. So a self is a biological thing. A personality is a biological thing. I could no longer think of my soul and myself as the same thing. That was a hard lesson to learn.

My core self -- not how others perceive me, but the million little things that I say to myself -- can get taken away by dementia. Nancy was left with one certainty: She knew she was from Edinburgh and that she was called Nancy. That was it. So if Nancy has a soul that will survive death, then it is hidden from her conscious self. 

AOL Health: Why is that terrifying to you?

AG: Because I'm a passenger on this journey, and I can't imagine anything more frightening than your brain shutting down on you, department by department, and you being aware of it. When Nancy lived with us, she was frightened, and she looked to me for help. I was the person who spent most days with her. She'd knock her hand against her forehead and say to me, "I know that something's terribly wrong. What is it? Please help me." There was nothing I could do for her. 

Alzheimer's has become the disease that is most feared by people -- more so than even cancer or heart disease. People are becoming more aware of what Alzheimer's does to a person and his or her family and how distressing that is. It's a disease of identity. So it has completely different implications than dying of heart disease or cancer. When you have cancer, you still know who you are.

AOL Health: What was the first sign Nancy had Alzheimer's -- and what age was she then?

AG: Twelve years ago when Nancy was 71, we noticed that she was forgetting things. She and her husband, Morris, were living in a retirement flat in Edinburgh, Scotland, and my husband, Chris, and I were living 150 miles away. We visited with our three children every couple months, and we became a bit alarmed when we saw that she had trouble with sequential steps. For instance, she would boil water in the kettle, but then she couldn't really think of what to do next to make coffee. Or she would wash the dishes in cold water and then be surprised that anyone thought that was odd. She began to forget where the keys were kept and how to unlock the door.

We asked her husband how she was doing, and he said, "She started going to a memory clinic, and they put her on some pills." Because we'd never had any experience with Alzheimer's, we had no idea what that meant. We just thought she was old. We were very naive.

AOL Health: When did you get the official Alzheimer's diagnosis?

AG: In 2000, Nancy had been diagnosed with Alzheimer's at the memory clinic, but my husband and I weren't told. And if they told Nancy, it was obviously a categorical mistake because she didn't remember. Her husband was probably told, but my theory is that he wanted to protect everybody, including himself. He didn't talk about it. He [would say,] "Oh, she's fine. She's just got memory problems." Later, in 2004, a doctor happened to mention what had been in Nancy's medical record for five years: She had Alzheimer's disease. It was rather shocking to hear that.

Up until that point, we'd had no contact with anyone [who had] dementia, so we had no idea what the symptoms were. And very often, the first sign of Alzheimer's isn't memory loss; it's trouble navigating. Nancy was having trouble finding things in the house and remembering how to get to the supermarket. For a decade, Morris did the supermarket shopping. Looking back, that was significant, but at the time, we thought it was just Nancy's quirk.

AOL Health: When did you decide to intervene?

AG: Around 2003, [before discovering the diagnosis,] we knew we had to do something. Whenever we'd visit, Nancy's house was in a mess, so we decided we had to get them out of their house, which was hard because Morris didn't want to leave. He's a very proud Scottish man who didn't want any help. Eventually, in 2004, we talked him into living in a bungalow two miles from our house. We thought this would be the answer.

For the year that it lasted, it was a complete and utter disaster. She didn't remember anything, which meant she couldn't be independent. We were spending nearly all day there, doing everything for her. She was in distress. And her husband, who was disabled, wasn't handling it well; he's short-tempered by nature.

AOL Health: When did you make the decision that Nancy and Morris could no longer live on their own?

AG: In 2004, we had a frank conversation with Morris: "Look, we've got to pool our money and find a big house where we can all live together -- or you'll have to go into a care home." This wasn't a choice as far as Nancy was concerned, because the idea of going into a care home upset her. So we ended up buying a house in the far north of Scotland. We thought this was the answer: We'd be able to cushion Nancy through her forgetfulness.

But Alzheimer's isn't just about not knowing things. It's about being fearful because you don't know who you are or why you're living in a particular place. It isn't easy to cushion someone who's afraid and deluded and has brain damage, which is what Alzheimer's is. The disease turned Nancy into another person.

AOL Health: How did everyone adjust to living together?

AG: Once we all moved into the shared house in July 2005, we had one golden summer. It seemed so much easier having her with us. She thought she was on holiday. The weather was beautiful weather, and the house -- a 19th century mansion with 22 rooms surrounded by the sea -- was in a stunning location. Nancy was happy.

But in the autumn, Morris broke his leg and went to the hospital. Because of complications, it took him six months to get back home. It was Morris who had anchored Nancy's days. She relied on him to be the center of her world, even though she wasn't completely sure who he was. When he came back from the hospital, she didn't know who he was at all. She became a lost soul in the world, angry and afraid. And from that point on, it was a very sharp deterioration. We have arms and legs, and we think we have brains. But the truth is that brains have us. And Nancy's brain was under attack.

AOL Health: How did Alzheimer's affect her personality and, effectively, turn her into a different person?

AG: Once she had completely lost her memory -- who and where she was -- we were all strangers to her. Imagine waking up in a house every morning and not knowing how you got there -- and everyone around you talks as if they know you, but you've never seen them before. That's what her life was like every single day. So of course, she became anxious. She would question us about who we were. She was angry and irritable a lot of the time. She didn't remember how to do a lot of things, and yet she wanted to be busy. So she was constantly running around the house saying, "What can I do?" It was exhausting.

Once the brain loses its certainty, it begins to come up with its own fictions. So from day to day, she was certain of things, hardly any of which were true. One day, she was the king of Scotland. The next day, she was 8 years old and at school. Or she would think she was a young mother and would ask, "When are my children coming home?" She sometimes thought she was in a hotel -- that was a rather amusing one. She'd sit next to me and say, "This establishment has gone downhill since the old days."

AOL Health: Did you play along with her illusions?

AG: We tried, but it's incredibly tiring. And the big problem we had with the approach called "validation" is that Morris wouldn't play along. He kept correcting her. He couldn't help himself.

AOL Health: Is validation considered the best approach?

AG: That's controversial. It works with some people, but it doesn't with others. And it didn't work with Nancy because she had one foot in the present and one foot in the dementia reality. She was halfway through the looking glass and couldn't make her two worlds gel.

Yet sometimes, I would still try to go along with her. For instance, in her working life, she'd been a company secretary in a medium-size business. She was a very organized person who worked long hours. Remnants of that memory survived. So on some days, she would think she was going to work: She'd get up at four in the morning and get dressed. I set up an office for her, and I went in to try and be an office colleague. But that would only last about 10 minutes, because she'd snap back into an awareness of the present. She would look at her old hands, then look at me, and say, "Why are you lying to me? This isn't my office!" So you really couldn't win playing along because her sense of what was real shifted by the hour.

The Shame of Caregiver Burnout

Broadway Books
AOL Health: During the two and a half years that Nancy lived with you, did you eventually stop engaging with her? 
  AG: Yes -- when she became unpleasant and hostile toward us all. She even began to hit the children. We tried to help her. I was giving so much. My husband, Chris, was there to help, but he was working extra hard because I wasn't able to work as I cared for Nancy. When Chris was home, he was struggling like the rest of us. I would try to protect him during his working day, when Nancy would try to invade his office and ask for help. It turns out that what I needed most as a caregiver was to be appreciated -- and I'm ashamed to even say that.

AOL Health: It seems understandable that being a full-time caregiver could burn out anyone. Why are you ashamed?

AG: Because it seems like a horrible way to think about someone who's so ill. My only problem was that I was tired. Nancy's problem was that she had a terminal disease and was afraid. She didn't need me to be irritable with her. What she needed was one-to-one love all the time. But people burn out -- and we all did.

AOL Health: Did Nancy have other grown children who could help out?

AG: Morris and Nancy couldn't have children naturally, so they adopted Chris and his younger sister. His sister is as involved as she can be by phone, but she lives in Canada and has a young family. She can't visit very often.

AOL Health: Did Nancy's medication help at all?

AG: Once she became hostile, I rang the doctor. Nancy was given a test of 30 questions to see how far along the road her disease was. If you get fewer than 12 questions right on that test, there's no point in being on medication. She got two correct, so we took her off medication.

She was on a tiny dose of an antipsychotic, which is very controversial. Here in the United Kingdom, there's been a lot of outrage about the use of antipsychotics for dementia patients. But it did help. It just took the edge off of her rage.

AOL Health: As Nancy's primary caregiver, what was your low point?

AG: [Nancy had] been up all night ranting and trying to escape from the house, so none of us was getting enough sleep. That morning had started badly, and it was just Nancy and me in the house. The kids had gone to school, and Morris was away at a therapy session. I got her out of bed at the usual time, and she was in an absolute rage. Some days, she woke up like that. When I gave her breakfast, she threw it all over the place. With a red face and bulging eyes, she then threw her toast into the fireplace. I told her off: "What the hell do you think you're doing? You have to clean this up!" So I handed her the coal shovel, which she proceeded to try and hit me with over the head. I ducked, and she missed me. She flung the shovel at the wall, and it broke into two pieces. All I could think was: What if the sharp edge of that shovel had hit one of my children across the eye? I realized we were coming to the end.

AOL Health: The end of what?

AG: When you're caring for someone who has Alzheimer's, there comes a point when it's no longer in the person's best interest to be in a family environment. All the little prompts from us that she belonged in our family were just making her more afraid and hostile. And after fear, anger springs. It was obvious that the best possible thing for her was to be away from us all. That's a horrible reality, but we had to face it. Sometimes when people don't face it, things just get worse.

AOL Health: Was it on the day of the shovel showdown that you finally faced that reality?

AG: It was about six months after that, when we told the social workers that she'd hit the children. She was then more or less whisked away -- first to temporary care, [which] became permanent care. Morris went with her. He was so relieved to be out of the house, because he could hand over the reins to the care home and just relax. He was absolutely exhausted. A year later, he died of kidney failure.

AOL Health: What impact did living with Nancy have on your three children?

AG: It really matured them. When we all moved into the mansion together, my daughters were 15 and 13, and my son was 9. As Nancy deteriorated, it was hard for them. They were frightened, and they would cry. They were baffled by her. They're very loving, doting grandchildren, and before she became ill, she had been a terrific grandmother to them. But then she became someone who didn't know who they were. She would call them names and try to hit them. At one point, I had to tell them, "I'm afraid she isn't your granny any longer." That was a very difficult thing to say.

Now everyone who comes across my children comments on how sympathetic they are to people's problems. That comes from living in a home in which a life-and-death struggle was going on. They're noticeably empathetic and kind about the elderly.

AOL Health: Are Alzheimer's disease and dementia the same thing?

AG: Alzheimer's is a kind of dementia. There are about 100 different kinds of dementia. Senility comes with the normal progression of aging, but Alzheimer's is a disease.

What we didn't realize about Alzheimer's is that it not only takes away your memory, [but] you also lose the ability to make a memory. Once you lose that, you're a lost soul in the world. Three thousand times a day, Nancy asked us who she was and why she was in our house. It was obvious that she'd lost her grip on her identity.

AOL Health: Is Alzheimer's hereditary?

AG: There are forms of Alzheimer's that are hereditary. Scientists are looking at genetic markers for it, and they've come up with some. But it's still a controversial question as to whether standard Alzheimer's is hereditary. The truth is that nobody really knows what causes it, how it starts or how to treat it. The best hope for scientific breakthrough is that we'll get to a point where it's managed like AIDS is managed so that people can keep living with it.

AOL Health: Before you began caring for Nancy, had you ever thought much about Alzheimer's?

AG: I'd never come across it at all. I assumed that the elderly people in my life who were senile and a bit confused were just neglected. I assumed there had been a failure of care. I thought that if I cared for Nancy, it would be an extension of motherhood. I thought I could take her into my care, and along with my other children, she would be safe, her journey would be cushioned and she would be a happy person. I had a complete misunderstanding of Alzheimer's disease. It was a steep learning curve for me.

AOL Health: Now that you're on the other side of that curve, do you fear getting Alzheimer's yourself?

AG: It's the one thing that I fear. If I were diagnosed, I would make preparations to kill myself before it got to the point where I was afraid. I would do anything to spare my children.

In Nancy's papers, we once discovered a membership pact from the euthanasia society. At some point, either she knew or had a feeling that she was ill, or she was just one of those people who believed that it's humane to allow people an easy passage out of terrible pain. We allow that to animals. We don't allow that to people. I think that's wrong.

AOL Health: Why did you write this memoir?

AG: It started as a catharsis. I'd been writing a novel, but we were so much in the valley of the shadow of death that writing fiction just seemed frivolous. I couldn't do it. So I began to keep a diary as a way of coping with our daily encounters and Nancy's deterioration. That became a newspaper article, and that article led to a book.

AOL Health: Do you still have contact with Nancy?

AG: Yes. Nancy's care is very expensive, so we had to sell our house and buy a smaller one. She's still in the same care home, and we're now six hours away in the south of Scotland. Some people would see that as a kind of neglect, but the truth is that it would be abuse to move her. She's made a new family there, as much as that's possible. They love her and treat her well. Morris did not want Nancy to be moved again. That was his last wish.

No comments:

Post a Comment

Share |