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Tuesday, May 22, 2018
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Bearden: Early onset Alzheimer's takes away past and future

We had great plans, Jeanne and I, for growing old together.
“We'll outlive the men, and all of us girls will come to Florida and move in with you,” she declared. “When we get dementia, we'll tell the same stories over and over again and still laugh as though we're hearing them for the first time.”
We made jokes about changing each other's Depends and riding around in golf carts after our driver's licenses were taken away. We would have happy hour before noon, and again in the late afternoon, because we no longer would understand the concept of time.
That sounded so funny when we were young pups in the late 1970s, working as reporters at the Kalamazoo Gazette in Michigan. Ha ha!
Not so funny anymore.
Three years ago, my dear friend of 35 years, the girl I considered the big sister I never had, was diagnosed with early onset Alzheimer's. She was 59.
We think of this as a disease for the elderly. Yes, as your age increases, so do your chances of getting some form of dementia. But when a person is still in her prime, out in the workforce and living an engaged life, it is so jarring and unexpected.
Of the more than 5 million people living with Alzheimer's in this country, about 200,000 are diagnosed before age 65. It can be detected as early as the 30s or 40s.
What can you possibly say when your longtime friend gives you this news?
It's not like cancer. Jeanne already went through that 10 years ago. When she got breast cancer, we could tell her in our cheerleader voices, “You can beat this!” She did, and was grateful to be a survivor.
But with Alzheimer's, you cannot promise victory. I wouldn't dishonor my friend by pretending things will get better. “We can beat this” just doesn't apply. At best, you can hope medications, luck and genetics will keep the worst of the disease at bay for an extended time.
If I sound pessimistic, it's because I've already gone this route. When my mom was in her early 70s, she was diagnosed with FTD — frontotemporal dementia — an insidious brain disorder that robs its victims of communication skills, emotions, balance and dexterity.
I never understood how awful it was until we experienced it, especially that last year of her life.
Of course, we knew something was amiss with Jeanne. There are four of us, tight-knit friends from Michigan who keep a promise to get together every year, though two now live in Southern California, one in Chicago and I'm in Florida.
Four years ago, the girls came here for one of one of our treasured “wild women's weekends.” That was the first time I saw bits and pieces of odd behavior: Jeanne not being able to make change at the store, staring at me blankly when I asked her a question, hiding her wallet.
“Oh, it's just chemo brain,” she'd say with a laugh, brushing off our concerns. Those who have gone through chemotherapy, as she once did, often blame the powerful drugs for memory lapses.
If only it had been that.
But those lapses began interfering with her job and at home. With her husband by her side, Jeanne began navigating that complicated journey of seeing specialists and undergoing tests. She could no longer teach college courses or continue with her writing career. With this disease, skills you once took for granted go away and never return, and you lose your grip on independence.
If this is a heartbreaking thing to witness for Jeanne's friends, I know it's even worse for her family members, who are losing a spouse, a mother, an aunt. Her 3-year-old grandson will never know her the way we did.
We still see each other every year, only now we always meet in California. As the disease progresses, air travel is too disorienting. But we made that promise years ago and we're sticking to it.
Jeanne knows who I am, though she hasn't a clue where I live. She still laughs at my stories from our madcap past, which become more outrageous in the retelling. It's amazing how sharp her long-term memory is, and how fleeting her short-term memory has become. She is still beautiful and a joy to be with, which isn't always the case with Alzheimer's.
Finishing a sentence and finding the right words is becoming more difficult for her as time goes on. And we have to help her with getting dressed, putting on makeup and going to the bathroom.
You can throw all those plans we made decades ago out the window. We hadn't factored in the detours and brick walls that put an end to our dreams. Now all I can do is call, write and plan a yearly visit, with the knowledge things will only get worse.
I hate everything about this disease.
“I love you,” Jeanne told me as we parted ways in June, and I knew she meant it. I gave her a hug and told her the same thing.
As her mind fades away, I hope my friend will somehow always know that.
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