Do your friends “get” what you’re doing? Not really? Not so much? Not surprising.
The hard truth is that it’s difficult for people to comprehend day-to-day caregiving — its demands, its tedium, its challenges, its hungry, 16-armed-octopus-consuming-your-free-time nature. Even if they’re loyal, longlasting friends.
Not unless they’ve been there, too.
Gary Joseph LeBlanc, a book dealer in Spring Hill, Florida, knows this well. He cared for his father, Joseph, from his early memory loss to his death of Alzheimer’s disease a decade later. “The average person doesn’t have a notion as to what you’re going through,” he says. “Your phone rings less and less because you’ve had to decline time and again because it’s hard to get away. And when you do see old friends, they don’t seem to know what to say anymore.”
This incredible shrinking social circle smacks a double whammy: Not only does spending less time socializing deprive you of a stress buffer when you need it most, but social isolation is a risk factor for dementia.(Maybe you’ve seen the research that suggests if your spouse gets Alzheimer’s, you might, too — at least, you face a six-times-higher risk. Researchers don’t know if it’s because of shared environment, like diet or exercise levels…or because of caregiving-related factors, like stress and, well, isolation.)
LeBlanc began writing about his experiences with his dad for Hernando Today, part of the Tampa Tribune, which now also runs his column. (I wrote about his column on Alzheimer’s phone problems last year.) His new book, Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving, is a collection of those columns — and it’s full of those useful insights on dementia care that only someone who’s “been there” knows.
“No doubt writing saved my sanity while caring for my dad — you have to save some part of the day for yourself,” he told me. And the social nature of a newspaper column read by many helped connect him with like minds.
I’m not saying every caregiver should become a columnist, but every caregiver can create a new discussion thread on an online forum, say, or collect the e-mail address of a fellow caregiver met at a support group or lecture you’ve managed to steal away to, for more talk later. Reach out.
Seizing the invitations you do get.
It’s easy to fall into the habit of deferring outings because, after all, it is hard to get away. And you might not be in the mood to hang with people who don’t really get what your life is like these days. But going anyway to that party you don’t feel up for pays off. LeBlanc calls socializing a necessary “interruption from all the depression and strain [of caregiving].”
Inviting friends to visit you.
Caregiving doesn’t lend itself to big hosting duties, but simpler gatherings (even if it’s just a cup of tea, a glass of wine, or take-out) can be manageable. One-on-ones are rewarding even if you’re caring for someone who has dementia. (Larger parties can stress you both.) If you reach out, you might help demystify your life for them.
Lowering your expectations.
It can be awkward when friends say things like, “Why do you have to do that all the time?” It hurts to be accused of not being “fun anymore.” Cherish the ones who lend an ear. Don’t worry about the ones who slip away. Maybe they’re just “on hold” for you now.
Instead, stay open to unexpected new friendships you might discover through your caring: A colleague in the same boat (revealing a side you never knew about her). A neighbor who’s also a hands-on caregiver. A sibling, seen in a new light and brought closer through this hardship. A new friend online.
I’m not suggesting these substitutes are as good as old times. But they’re something — a something you deserve and need.
By Paula Spencer Scott, Caring.com Author