When we got the news that my mother-in-law’s ovarian cancer had come back (if it ever responded to chemo the in first place), we were speechless – surprised, betrayed, aghast at the possibility that she was going to lose this battle. We all hang on every positive word out of oncologists. “We’re encouraged that the tumor growth appears to be slowing” means “you’ve got a healthy five years of carefree joviality,” right? Wrong.
Interestingly, my father-in-law, despite ceaseless hand wringing, was far more philosophical than the rest of us. “We all hope for a heart attack in our sleep,” he said, “but virtually none of us gets it.” The big fear? Alzheimer’s. He said that as devastated as he was to lose his wife’s physical presence in his life, it would have been far more excruciating to watch her brilliant, encyclopedic, vivacious mind disappear while her body remained in the house.
In the past year, two of his closest friends have been diagnosed with Alzheimer’s — men with whom he’s shared 60 years of friendship, college buffoonery, new infants, challenging teenage parenting years, the tragic death of grandchildren, and jubilant trips to Italy. His friends are gone now, unable to find the bathroom in the house where they’ve been visitors for years. One is being lovingly but anxiously cared for by his wife of 55 years. The other has been left by his much younger wife, who can’t cope with the demoralizing caregiving burden much less how to explain to her teenage children why the father who seemed completely age appropriate (he was extraordinarily youthful) no longer remembers that they were born.
And that’s where “the Greatest Generation” lives now – in daily fear that the grim reaper of Alzheimer’s will descend on them or someone they love.
Blessedly, my father-in-law has headed in the opposite direction. At age 55, when on the phone with a delivery person, he was unable to remember his own address. He put down the phone, walked to the front porch, looked at his house number, and returned to the phone able to provide his street address. “We’re doomed,” we thought. But 22 years later, he’s sharper than ever – still working and teaching, taking his students out to lunch, downloading apps onto his iPhone and then edifying us about how they work. His social schedule is bustling (all managed via google calendar), and he only forgets the things he wants to (like how to operate a washing machine). We are extraordinarily lucky.
But, like so many older Americans who don’t actually have Alzheimer’s, he lives in fear of it – not only that it will consume his brain but also that yet another brilliant dear friend will slip from his grasp, no longer recognizable due to this insidious disease. It’s a cloud that looms at all times. Deep, penetrating terror.
For starters, as the world-renowned Tennessee women’s basketball coach, Pat Summitt, who took early retirement because of early-onset Alzheimer’s, has most generously made known to us, Alzheimer’s comes in stages, and many people move through the process of cognitive decline at a pace that their families can absorb into their lifestyles, albeit with difficulty. At BeClose, we encounter many families whose loved one if, for the most part, continues to operate independently provided they have a regular schedule of check ins and the technological support our system provides.
And in addition to technology, there have been tremendous advancements in assisted living centers, caregiving communities and agencies that provide support and assistance, but these live-in options are often far too expensive for most families. So families have options for help, but painfully few. This leaves caregivers and the sandwich generation often on their own, managing their own families, and caring for aging parents – often too much to handle.
Caring.com fielded a survey that showed that caregivers suffer from depression at double the rate of non-caregivers. We will face the same challenges that society faced when mothers chose in great numbers to take jobs outside their homes; an ecosystem of caregivers, compatriots and social innovators will need to develop to address this rapidly growing need. As Ellen Goodman, the renowned columnist is quick to point out, the largest group of adult child caregivers are the boomers right now. If they could pull off the social revolution of the 60’s, the women’s movement of the 70’s, and the childcare revolution of the 80’s, they’ve got the right skill set to figure this one out too.
Special thanks to Liddy Manson for this guest post. Liddy is President of BeClose and an emerging voice on Aging in America. She will be our guest on 10/23 for our weekly #treatdiarieschat on www.tweetchat.com. Join us and learn more!