Under the Shadow of Alzheimer's
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Under the Shadow of Alzheimer's

How do you keep a sunny outlook when both of your parents had dementia -- and you know you're at risk for it too?

The Battle of Dementia

I never knew what to expect when my mother called. That day she barely said hello before asking in a cheery voice, "How old am I?"

"You're 78," I replied. "Why do you want to know?"

"Ben wants to know." Ben was the gentleman friend my mom had met in her independent living complex in Florida. "He thinks we should get married and wants to know how old I am."

"Why? Does he think you're too young or too old?" I asked.

"Very funny!" she cried, her tone a mix of mirth and faux indignation.

"I hate to burst your bubble," I told her, "but you're already married, and if you get married again you're going to be a bigamist. "

"Oh, that's right," she said, laughing. "And who am I married to?"

"You're married to Daddy," I whined like a great big 46-year-old baby.

My mother was in the early stages of Alzheimer's disease when she called me that day about eight years ago. She didn't always remember that she had a husband, but my father wasn't offended because he didn't know that he was married, either. Diagnosed with dementia at the age of 66, he was now bedridden in a nursing facility in Florida.

Was it my mother's idea to get married, or Ben's? He seemed like a nice man. He was in possession of all of his faculties -- and a car. But did he realize my mother had Alzheimer's? And if so, did he have any idea how difficult it is to live with someone who has it? Devoted caretaking is a huge commitment even after a lifetime of marriage. After a year of acquaintance, I wouldn't expect anyone to be signing up.

My father survived for two more years, during which time my mother's dementia got worse and she moved to assisted living. By the time my father died, my mother and Ben had lost touch and she was even getting foggy about who I was. Her lucid moments were increasingly rare, and she was becoming more difficult, so I decided to move her to an assisted living residence near my home in New York.

My husband, Darryl, and I flew down to Florida, picked up my mom, and accompanied her back to New York. Since she wasn't expected at her new residence until the following morning, she spent the night at our house. She seemed happy to see her grandsons (Austen, who was 18, and Eli, who was 14) but wasn't entirely clear on who they were. Eventually she became restless and agitated, pacing nervously and repeating over and over that she wanted to go "home." I gave her an anti-anxiety pill, as her doctor instructed, which calmed her down until bedtime.

When she couldn't put on her nightgown, I tried to help her. As I eased her blouse over her head, she pushed me and slapped my hands away, yelling, "What the hell do you think you're doing! Leave me alone!"

"I'm just trying to help you get into your nightgown, Mom."

"I can do it myself! Get away from me!"

I was tired and on the verge of tears. "Come on, Mom, let me help you," I said, trying to put the nightgown over her head.

"You're hurting me!" she screamed. "Goddamn you, don't touch me!"

"I'm your daughter. I wouldn't hurt you."

"You're not my daughter! Get away from me!" Tears streamed down my face as she called me names. I realized that my sons could hear the ugly battle.

After I settled Mom down, I went to talk to the boys. When Austen said he didn't know how I could take what had just happened, I explained that it was probably far more upsetting for my mother, who no doubt felt humiliated and confused.

What If I End Up Like Her?

Later I thought, for what must have been the thousandth time: What if I end up like her? The thought of being so debilitated that I would need Austen or Eli to dress me was deeply disturbing on many levels. I would never want my sons to be saddled with my care, although surely, if I get Alzheimer's, I will be someone's burden.

If both of your parents have Alzheimer's, you have a 42 percent chance of getting the disease as you age. I'd be lying if I said this statistic doesn't haunt me. I worry preventively, as if the right dose of angst will ward it off. I like to do my worrying aloud, and my favorite audience is my husband. I'm sure Darryl would prefer to hear less about my foreboding and more about what's for dinner. But my parents' Alzheimer's has been looming like a black cloud over me for years, so the dark thoughts are never far from my mind.

I watch anxiously for signs of impending doom. When I'm on the phone while doing e-mail, I occasionally type what I mean to say to the person on the line. I can't multitask like I used to, and I fret that this must be the first sign of dementia. But then I'll reassure myself with the fact that one of my friends forgot to put the top up on her convertible and only remembered three hours into a terrible rainstorm, or that another friend forgot her daughter's birthday. Most people are unconcerned about what this might mean because their parents don't have Alzheimer's. On the other hand, one in five people are expected to get the disease by the time they're 80, regardless of genetics, so maybe they should start worrying.

I don't ever want to be a burden to Darryl or Austen and Eli, so in my daydreams I have concocted a fantastic plan. If and when my luck runs out, I'll take a vacation to a euthanasia-friendly country -- the Netherlands might be nice. First I'll enjoy lots of sightseeing and fine dining (calories be damned at this stage of the game!) followed by a giant dose of morphine, administered by a good-looking Dutch doctor.

But ending it all, I suspect, is not that easy. It must be hard to pick just the right moment, when the bad so outweighs the good. Perhaps, over the years, you'd set aside just the right amount of medication but, suddenly, you'd realize that it has reached its expiration date before you have. How can it not always feel too soon? You'd miss your husband and your children and their milestones, and let's not forget all of your favorite cheeses and, of course, your friends. And won't they miss you if you sign off too soon? No one wants the curtain to fall before the show is over. The problem is, if you have Alzheimer's, by the time life doesn't seem worth living, you're not mentally or physically capable of ending it all.

However, though I can't afford to get sick, I don't exactly get to make that choice. So five years ago I tried to gather enough information to pinpoint my odds more accurately. I consulted a neurologist, shared my family history and concerns, and asked him what I could do. "We can't definitively diagnose Alzheimer's disease, except posthumously," he told me. "But we can follow you and give you an MRI every so often and see if there are any changes in your brain over the years."

I had three questions: "Will it stop me from getting the disease?" "Do you think there will be a cure in the next five years?" "Does insurance cover this?"

No, no, and no. "No, thanks," I said.

"Let me put your mind at ease," he said. "You don't have the demeanor of someone in the earliest stages of Alzheimer's. You have a normal memory for your age, given the amount of stress you're under."

So for now, I live my life no differently, except for taking a few preventive measures. I eat the good brain food -- salmon and leafy green vegetables -- and take all of the proper vitamins. I exercise, read and write daily, and bone up on my French when I can.

Everyone knows that they're going to die one day and unless that day is looming uncomfortably near, it's human nature to put it out of your mind. Do I live each day like it might be my last? Not a chance. I've got obligations and priorities. Secretly, I'd love an excuse to travel the world and buy my dream home. But in the real world, we have to pay the bills and send our kids to college. Life, I've decided, is basically a tragicomedy, so I might as well save my angst for when bad fortune actually strikes.

You Can Reduce Your Risk

Alzheimer's disease starts with mild memory lapses and escalates to personality changes, trouble communicating, lack of awareness, and difficulty performing even simple tasks. More than 5 million Americans are currently living with the disease, and that number is expected to surge as baby boomers reach 65 and older. But don't drive yourself crazy with worry. There are things you can do now to lower your risk, says Majid Fotuhi, MD, chairman of the Neurology Institute for Brain Health and Fitness in Baltimore and a member of the LHJ Medical Advisory Board.

Get More Exercise
By doing regular aerobic activity, you can actually grow your hippocampus, the part of your brain responsible for short-term memory. Research shows that a larger hippocampus protects against memory loss and dementia.

Take DHA
DHA is a type of omega-3 fatty acid found in algae and fish that may improve memory and lower Alzheimer's risk. Dr. Fotuhi recommends eating two servings of salmon or fatty fish a week, plus taking 900 to 1,500 mg of DHA in a daily supplement.

Say No to Trans Fats
People with diets high in trans fats are more likely to experience signs of dementia like brain shrinkage and lower scores on thinking and memory tests, according to a recent study. Check nutrition information on packaged and fast foods, the main sources of trans fats, and eat more fruits, nuts, and vegetables.

Keep Calm
Stress in your younger years can lead to dementia later, according to a 35-year study of women. "Constant stress leads to shrinkage in the brain," Dr. Fotuhi says. Make time to meditate or breathe deeply.

Learn Something New
Learning has the same protective effect on your brain as strength-training does on your bones. By building new connections, your brain gets stronger and stays in shape longer. Start language classes, learn to play chess, or start reading up on a complicated topic.

Time Your Hormone Therapy
Starting hormone therapy in your 60s and 70s may increase your risk for dementia by nearly 50 percent, according to a study in the Annals of Neurology. But using it in midlife, right when menopause starts, and weaning yourself off of it within two years may protect against dementia. Best advice: Talk to your doctor to weigh the pros and cons.

--Amelia Harnish

Originally published in Ladies' Home Journal, April 2012.