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I first noticed that Sue was having memory problems about six years ago. She wouldn't remember our phone conversations from one week to the next. She'd ask the same questions again and again. Initially I dismissed it as the stress of her hectic life: She was a working mom with two little kids. But her memory loss kept getting more noticeable -- and more worrisome.
There was one really strange incident: Sue was staying overnight at my house. When we were setting up the trundle bed in the guest room, the bed collapsed on my foot. It hurt and I made a pretty big deal of it. The next morning I was complaining that my foot was still really sore and Sue asked why.
"Don't you remember that the bed fell on it last night?" I asked.
"It did?" she said. Even when I described the whole scene she had no recollection of it. None. It was as if it never happened. That totally freaked me out.
I urged Sue to see a doctor, but she refused. She said that her memory issues were because she was getting close to menopause. Eventually, though, her husband, Jeff, persuaded her to get examined by a local neurologist.
Sue went to that appointment alone and never fully told me what the doctor said. Maybe she didn't remember. I know he gave her an MRI, which showed that everything was normal. She was relieved and insisted that her memory problem was caused by hormones and stress. I wasn't convinced.
Coincidentally, I met Alan Jacobs -- a highly regarded New York neurologist who specializes in memory-loss disorders -- who happens to live in my town. I gave Sue his number and begged her to call him, but she didn't.
Over the next year things kept getting worse. I had the sense her marriage wasn't going well. By now she had quit her job and spent most of her time sitting around all day long. Jeff was working full-time and ended up having to deal with the girls and the house. Sophie and Emma were upset because Sue was always forgetting things. They'd have to remind her again and again to sign their homework. She'd forget to pick them up from school. She had trouble driving --since she couldn't remember how to get anywhere -- even places she'd been to hundreds of times. Finally Sue agreed to meet with Dr. Jacobs. I went with her to the first appointment.
I initially suspected that Sue had early-onset Alzheimer's because of her symptoms: It didn't seem like the normal kind of forgetfulness that some women experience around menopause. I gave her a series of tests, one of which involved having her memorize a list of words. Then I distracted her for a while and afterward she couldn't remember them as well as she should have. It was clear that she had MCI, mild cognitive impairment, which can be the first sign of Alzheimer's.
There's no specific diagnostic test for the disease. An MRI really can't tell you much. All it does is take a picture of the brain and, in the early stages of Alzheimer's, everything usually looks normal. I sent Sue for a PET scan, which allows you to see the brain in action. The scan showed a pattern of cell activity that is consistent with the disease. This, the results of her memory tests, and her history all led me to the diagnosis.
Alzheimer's is extremely rare in someone Sue's age. You mainly see the disease after age 65. Typically, Alzheimer's progresses in stages, each lasting about four or five years. Memory is the first thing to be affected. Then patients lose language and spatial-processing skills, such as the ability to judge height and distance. Then the higher brain functions, like reasoning, start to go. Eventually the disease progresses to a point where patients can't recognize their surroundings or do things that involve multiple steps, like get dressed or brush their teeth. At the end stage they can't do anything but lie in bed.
Alzheimer's is always an awful disease and there's no cure yet. But what's especially tragic about Sue is the fact that she's so young. At this point in her life she should be taking care of her family, but instead she is the one who needs a caretaker. That's what makes her situation so heartbreaking.
Sometimes when I look at Sue it's hard to believe she's the same little sister I grew up with. I especially remember how creative and artistic she was as a child: She painted, played the clarinet, and loved to sing. And she had an absolutely gorgeous voice. She was also extremely competent. Even as a kid Sue was the most focused, organized, and hardworking person around.
After graduating from college she moved to Los Angeles to try to make it in the music business. When that didn't work out, she came home to work with our brother's music-production company. Eventually she landed a great position as a network television production supervisor. That took her all over the world. She even went to Norway for the 1994 Winter Olympics.
About a year after her first daughter, Sophie, was born, Sue quit that job. I think she found it too hard to juggle a demanding career with a baby. Besides, she and her husband, Jeff, are very family oriented and I think they felt she should be home more. When her daughters, Sophie and Emma, were little, Sue worked part-time as a teacher at their preschool. She played with them in the afternoon, took them to ballet classes and did arts-and-crafts projects. She loved being a mom.
It's funny how things change. I take care of Sue now, but in the early years of our relationship she was the one who took care of me. I was 27 when I met Sue, living at home and working odd jobs in painting and construction. She was the grown-up with the real career. At first I couldn't believe she could love a guy like me. Sue was the most intelligent, sophisticated, and kind woman I'd ever met. She was supportive in the early years of our marriage. She encouraged me to enroll in college and paid all the bills until I got my degree and found a job as a technical writer. I could never have done this without Sue.
It's hard to say when things first started getting weird. Looking back, I don't know what was just the stress of our busy life and what was the Alzheimer's. But about six or seven years ago our life felt really chaotic. Sue was having a hard time coping with the kids, and the house, and her job at the preschool. This was unusual since until then she'd been an organized and meticulous person and such an attentive mother. I persuaded her to quit her job at the preschool, but even that didn't help. I'd be away at work all day long and then come home, and dinner wasn't ready. The girls hadn't done their homework. Our relationship wasn't going well. We fought continually, sometimes over the silliest things. To me it seemed like Sue had become much more stubborn and inflexible.
Around this time the girls and I noticed that Sue was always forgetting things. She couldn't keep track of her keys, credit cards, or glasses. She wouldn't remember watching a movie that we all had seen together. Sophie and Emma called her Miss Forgetster. At first we all thought it was kind of funny. But then it started getting more and more alarming.
I'll never forget the day we got the results of Sue's PET scan. It was one of those bizarre moments in life when everything turns upside down. When we heard the word "Alzheimer's" we were stunned. Sue started crying and I just sat there in disbelief.
Since then her symptoms have gotten steadily worse. She stopped driving about a year ago. She just doesn't remember how to get anywhere. It takes so much of her mental energy to accomplish the simplest things that she's tired all the time, so she sleeps a lot. Last year Sue could still wake up early, feed the cat, bring me a cup of coffee, and give the girls breakfast. Now a lot of days she doesn't even get up in the morning. And when she does, she often doesn't even know what day it is. I can't leave her alone for too long anymore. My mom is here every Tuesday and my aunt and uncle come on Thursdays. We've hired a great woman, Marilyn, who helps out a few days a week. We're probably going to have to increase her hours.
Financially it's a struggle. Fortunately, Sue has been able to get Social Security disability, so that helps. And I'm working with a financial planner to make sure that whatever happens we don't end up totally broke.
How am I dealing with it? I run the whole gamut of emotions, depending on my patience that day. For one thing, I really miss the woman I married. It's hard to know how to relate to her. I try to treat Sue with respect and dignity, but I also have to guide her. When we go out somewhere, it's more like being with your grandmother than your wife. I can't believe that someone who once managed the complicated logistics of network television production now can't even operate a remote control.
There are days when I'm worried, and days I'm angry, and days when I feel guilty, like when Sue says that she feels like a burden to me. So far she still is aware of how her brain is failing and she knows what's in store. She once said to me, "Why don't you just lock me away now?"
But we have good days, too, so I just kind of keep on rolling. I'm seeing a therapist, and I go to two support groups. I'm involved with the New Jersey Alzheimer's Association, which has been a hugely helpful resource. I've got a great boss who lets me work at home. I have good friends and a great family. And I've got my wonderful daughters, who pull me out of the darkness, back into the light.
I was in fifth grade when my mother was diagnosed with Alzheimer's. At first I didn't think much of it. I thought, So my mom is going to forget stuff. How bad could that be? But it's much worse than I expected. Sometimes it feels as if I don't have a legitimate mother who can take me shopping or talk to me without stopping halfway through every sentence.
My mom gets confused and annoyed really easily. I try not to get frustrated with her so I kind of ignore her sometimes. But she takes that as me shutting her out. That's not what I'm doing. I love my mom. It's just hard for me to deal with everything.
What concerns me most? One thing is that I'll inherit the disease. I don't want to ever forget myself or the people around me. But my biggest fear is that my own mom might forget me. She already doesn't remember a few things about me, including my birthday.Emma Schieli
Now that I'm old enough to get to know my mother as a person, I'm afraid that I won't be able to. I know that my mom is underneath the Alzheimer's, but I don't think I'll ever see the person who was a teacher, a class parent, and the woman my dad fell in love with.
The really scary part is knowing that people eventually die from Alzheimer's. I read that the average life span for someone after diagnosis is eight years. My dad told me that it's nothing to worry about, that's just an average and doesn't really mean anything. He says everyone's different, and blah, blah, blah. But I'm still scared.
Alzheimer's is such a difficult disease because from one minute to the next you don't know what to expect. Sometimes when I'm talking to Sue it seems as though she's very much there and can understand what I'm saying. But then a little while later it's totally gone. I've noticed that she's getting upset more often. She bursts into tears if she feels frustrated by something. And if I remind her to bring her coat and pocketbook when we go out she gets angry. But if I don't she forgets.
We keep busy when we're together. She likes getting out of the house, so we go out to lunch or to a bookstore. When we're home she mostly just sits around. She doesn't watch television, and she doesn't seem to be able to read. Her favorite activity is listening to music and singing. Often I'll hear her singing in another room. It sounds so lovely. She's got such a pretty voice.
In looking ahead, there are a few things that concern our family a great deal. We're really worried about Jeff, who is such a loving, caring father and husband. We see the strain this puts on him, so we do what we can to support him. It's tough. We all have our own families, and we're taking care of our mother, who is 87. But my sisters and I really want to lighten the load on Jeff. Sue's illness doesn't have a concrete time frame, and we don't know how long the road ahead is.
It's devastating to see how deeply this disease has affected not only Sue but the whole family. I've only seen my husband, Stephen, cry a few times in our 17 years of marriage. He cried with happiness when each of our three kids was born, but when he came home from seeing Sue recently, he cried from true sadness. He stood in the kitchen, tears streaming down his cheeks, saying, "That's my little sister."
I know that Stephen and his siblings treasure whatever quality time they spend with Sue. My sister-in-law Barbara said that being with Sue brings her entirely into the moment. "Most of the time we're dissecting the past or worrying about the future," she told me. "But with Sue you have to stay focused on the here and now. In a way, I find that kind of inspiring."
What inspires me is seeing what a strong and loving family Sue is blessed with. Jeff is a saint; his relatives are amazingly devoted. Watching everyone rally around Sue makes me appreciate our family. She may be fading away, but Sue is surrounded by people who love her dearly. Somewhere in there, I suspect that she knows it.Alzheimer's Facts
For more information, visit the Web site of the Alzheimer's Association at alz.org.
Originally published in Ladies' Home Journal, May 2010.