Some 39% of adults serve as full- or part-time caregivers to a loved one struggling with a disease or disability. You almost certainly know one of them. But do you know what kind of strain they are under? And are you making any effort to support them?
In caregiver support groups, I hear the same question again and again: What has happened to all of my friends? Where are they now, when I need them most?
Part of the answer lies with the caregivers themselves, who often don't have the time it takes to nurture their friendships. They face a steady stream of demands from dawn to dusk and fall into bed exhausted. They don't get out much. They usually can't leave in the evening to meet friends for a drink or dinner. They're often no-shows at club meetings and private parties, and they don't get much opportunity to work out at the gym. The accessible social life most of us take for granted shuts down as the responsibilities of caregiving mount.
And the work can also be heartbreaking. Some 15 million caretakers are dealing with loved ones with Alzheimer's disease, which has been described as an invisible illness because its sufferers can appear quite normal even after calamitous changes have occurred in the brain. From mid-stage on, though, they start forgetting not only what just happened and where they are, but also how to look after themselves. The caregiver eventually has to take over the daily rituals of bathing, buttoning, hair-combing and the like, sometimes in the face of resistance and outright hostility from someone who no longer recognizes the caregiver as a loving spouse, partner, adult child or sibling.
Friends who don't live with this kind of challenge can be put off by it. Although it's easy to smile indulgently at the funny speech and mismatched clothing of a toddler, these things seem strange in someone who's 70.
But here's something to keep in mind: There's a strong likelihood that one day you'll either have the disease yourself or someone you love will, so it's worth trying to overcome your discomfort. About half of all people who live to 85 have symptomatic dementia, according to the Alzheimer's Assn. One good way to start feeling comfortable around such people is to offer support to friends or family members who are caring for them.
How should you do that? Offering help to a caregiver starts by accepting that he or she won't be able to give back in the same measure. Let your caregiver friends know that you don't expect them to reciprocate favors.
Then try to put yourself in the caregiver's shoes. If you're putting in 168 hours of on-call time per week tending a person who is unable to manage without you, you're probably too drained to take the initiative to call a friend, and you're worried about coming across as too pessimistic or inviting a storm of unwanted advice if you do.
But think of the impact five or six friends could have on your situation by organizing to take turns bringing you dinner once a week, or sitting with your loved one so you can go out, or calling you just to listen. Or what if they planned events both you and your loved one could enjoy? What if they stopped by and cut the grass or helped with leaves? I know a caregiver who paid a hefty sum of money at the end of autumn to have the leaves raked to the curb for pickup. She left the house for an hour or so, still smarting from the blow to her budget, and returned to find that her husband with Alzheimer's had cheerfully raked the pile of leaves back into the yard.
Helping caregivers isn't just a job for their closest friends. The responsibility needs to be shared with neighbors, extended friendship circles and co-workers — and you can't wait for someone else to ask you to help. Is there a caregiver among your extended group of friends or relatives? If so, the holiday season is an excellent time to get to work: call, drop off dinner, visit, run some errands. And organize other friends to help too. Caregivers cannot change or lessen their responsibilities. But friends can join forces to help in ways that will make a real difference.
Mary McDaniel Cail is the author of "Alzheimer's: A Crash Course for Friends and Relatives." http://www.allweatherfriend.com.