[6]You know the situation. You’re engaged in small talk with a friend, who maybe knows your parents. Somewhere just beyond questions about your job lurk the awkward questions about your parent with Alzheimer’s. In my case, it’s my mother who is meandering ever so slowly toward the end of her battle with early-onset Alzheimer’s disease.
I generally put on a good face and enthusiastically deflect, noting that things don’t get better at this stage but my family back in Ohio is taking good care of her. I cheerfully mention that I’m working with the Alzheimer’s Association and doing what I can way out here in California. Alas, I am that oft-resented character in this doleful display: the long-distance caregiver.
When I hear about people with Alzheimer’s disease, the story usually goes something like this: We got the diagnosis, it was really hard, and then he or she passed. Nobody ever shares the details about the “it was really hard” part, and for good reason. It is really hard; ugly, dehumanizing stuff happens on a daily basis to both patient and caregiver(s), and it goes on for years.
I’ll also spare you the goriest of details, but imagine trying to care for someone, a 68-year-old someone, who doesn’t know who you are. This person is literally scared of you, the well-intentioned caregiver. Sometimes she yells at you; sometimes she tries to hit you. She won’t let you clean up her embarrassing messes. She won’t let you feed her or help her from the chair that’s held her hostage for days.
Actually, as the long-distance caregiver, I usually am spared the goriest of details. I often (half) joke with folks who ask about my mother: I tell them that I’m the jerk in California that flies to Ohio four or five times a year to make sure that everyone there knows they’re doing everything wrong. I send the occasional box of supplies or help get something cleaned up around the house, and I waltz back to my unencumbered life, satisfied that I’ve done my part.
That’s not how it is, not for this long-distance caregiver. I want to do more. I want to quit my job and spend as much time with my mom as my brother does. I want to relieve my stepfather, for whom caregiving is an impossible, full-time, overwhelming job. I doubt my worth as a son and a human being on a daily basis. I have these thoughts, I get weepy about my oppressive helplessness, and then I go back to whatever I’m doing, in California. The cycle of guilt marches on.
But let’s pause for a second to celebrate we long-distance caregivers. No one feels sorry for us, nor should they. We have a job to do, without whining or excuses. Let’s focus on the things we can do and the contributions we can make from afar, be they financial or emotional. We can lead by example and get our rears to Ohio as often as we can. I’m fortunate that my boss and company have been incredibly supportive and flexible, and I’m grateful to have the resources and constitution for travel that enable the time I do spend with my mom. I can call every day, even though I don’t. I can call more often, even if she doesn’t know who I am.
In fact, I think I’ll go call her right now.
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