A few months ago I mentioned to a work associate that a friend and I had met as board members of the Alzheimer's Association. "Wow," he said, with a chuckle, "I hope that doesn't mean you'll both be getting Alzheimer's."
I tried to brush the comment aside, but couldn't. And then it hit me: In addition to being insensitive (had he forgotten my mom died of Alzheimer's six years ago?), this person was clueless. And he's not alone. Unless you've seen it with your own eyes and felt it in your own heart -- the long, depressing, dizzying decay of a loved one due to Alzheimer's disease -- you simply don't know.
Even knowing what I know, I'll admit to having joked at times when I couldn't find my sunglasses (and they were on my head) or I couldn't locate my keys (and for some reason they turned up in the bathroom): "I must be getting Alzheimer's!"
But no more. Because as long as we continue to associate this awful disease with simple forgetfulness and the unavoidable slowing down of old age, we're kidding ourselves into believing that Alzheimer's is something we don't have to think about -- something we can even joke about.
It's not cancer, after all. And people don't drop dead from Alzheimer's as they do from heart disease.
But guess what? Alzheimer's disease nevertheless is a death sentence. And there's nothing -- absolutely nothing -- that can effectively treat it, let alone cure it. Once diagnosed, a person slips away from reality and self-sufficiency a little bit each day, losing the life they knew and wreaking havoc on the lives of their loved ones.
It's mind-boggling, really: Alzheimer's is a terminal disease that afflicts more than 5 million people in the United States alone. It's the fifth leading cause of death for people aged 65 and over. Yet our country still spends only $500 million a year on Alzheimer's research, compared with $3 billion on AIDS and $6 billion on cancer.
And I know why. Because we think of Alzheimer's as a grandma's disease, an elderly uncle's disease. And we're all going to die from something in our old age, right?
Sure, it's a fact that the majority of Alzheimer's sufferers are over the age of 65. But think about all the 65-plus people in your life: Are you prepared to lose any of them in a most awful way? They'll lose their short-term memory first. Then they'll lose the ability to dress themselves, carry on a conversation, take a pill, use the toilet. They'll act irrationally, say inappropriate things and look at you like you're a stranger -- or worse, the enemy.
As a caregiver, the task is exhausting, gut-wrenching, infuriating and lonely. I shared the responsibility of caring for Mum with a large, remarkable family. Still, I felt so alone and utterly numb from the physical and emotional toll of those day-to-day experiences, so many of them unmentionable. And I missed my mom, more and more every day, and I knew I was never getting her back.
Loss became the norm. Every week, it seemed, our mom lost another part of herself and another part of her ability to be self-sufficient. Every week there was a new problem to solve -- how to get Mum to eat, how to keep her from roaming throughout the night, how to calm her in the afternoons, how to preserve her dignity when so much of her behavior was anything but dignified. Crushed by all the problem-solving and our own feelings of frustration and depression, most of the time we'd forget: Mum was suffering, too.
Because people with Alzheimer's disease do suffer. They desperately want to go home, even when they're already there. They don't recognize the person sitting across from them, encouraging them (forcing them?) to eat. They become paranoid and afraid: They can't find their money, or their favorite purse, so someone must be stealing from them. And they hurt physically, too -- from the mix of medications that oftentimes do more harm than good, from the bumps and bruises they get from roaming, from the untreated symptoms of other ailments.
One of the greatest curses of this disease is that the people who have the most to say about it can't tell us what's bothering them. So unrelated medical conditions become almost impossible to manage -- because, by the time the disease has really taken its toll, an Alzheimer's sufferer can't communicate.
There are millions of stories about people with Alzheimer's disease and the more than 15 million family members and friends who care for them. Hundreds of thousands of those stories involve people suffering from early-onset Alzheimer's and other forms of dementia that strike people in their 50s, 40s, even in their 30s. Those stories are exceptionally cruel.
I recently met up with a friend whose mother now has Alzheimer's. He showed me a picture of the two of them during one of his visits, and my eyes immediately welled up with tears. "What's wrong?" he asked. "She has the look," I said, sadly. It's something all people with Alzheimer's eventually get: the empty eyes, void of not only memories but life. I'll never forget that look on Mum's face, because it made me feel empty, too.
Alzheimer's is spreading at an epidemic rate. Let's all take the pledge to never again joke about this terrible disease, or dismiss it as just a part of aging. Let's insist on finding some kind of treatment, and one day a cure.
Let's become desperate about Alzheimer's, because millions of families are desperate. They're losing their loved ones, a little at a time, and the suffering is indescribable.
Betsy Momich is a board member of the Alzheimer's Association Greater Pennsylvania Chapter, which has its annual Walk to End Alzheimer's Oct. 5 on the North Shore. For more information: 1-800-272-3900, alz.org/pa.