Self Caring

The Art of Common Sense Caregiving

Heart of Hearts
All Rights Reserved

Do you trust your gut as a caregiver? Last Sunday's New York Times ran the best piece on Alzheimer's caregiving since Chief Justice Sandra Day O'Connor made an impassioned plea on its editorial pages for a national Alzheimer's plan. Sunday's piece profiled Beatitudes, a Phoenix nursing home that gives residents chocolate, booze, baby dolls, White Shoulders perfume, showers stalls painted with tropical murals "“- basically whatever seems to make residents happy and calm, however unorthodox.

Mostly it was an article about common-sense dementia caregiving.

Do what works. Trust your instincts about what's right, what's effective, what's needed.

It can be hard to trust your gut, for some big reasons.

Here are a few of those reasons -- and how to overcome them.

  • When you're inexperienced at something (like caregiving), you feel like an amateur (as opposed to an expert, because after all, we live in a culture of experts).

BUT, you're the expert on your loved one. Nobody else knows him or her as well.

  • You assume that because Alzheimer's has been around awhile, there's a right way to proceed.

BUT"¦there isn't! Every case of dementia is unique, as is every household. So gather up lots of ideas from lots of sources. But don't let yourself be paralyzed trying to identify that one true path. Plunge in. Stumble. You'll still move forward.

  • You can't believe effective treatment for a disease could be so simplistic.

BUT it may be, in the absence of a cure. For all the research on medicines to treat Alzheimer's, it's the efforts to keep patients feeling safe, happy, and productive that seem to work best. As adviser Lisa Gwyther of Duke says in the NYT article, "There's actually better evidence and more significant results in caregiver interventions than there is in anything to treat this disease so far."

  • Everyone else seems like they're managing better than you.

BUT the reality is that we're all struggling through good days and bad that have little to do with skill or good choices. You can't see what goes on in some other caregiver's house at 2 a.m. Even the most together, inspiring support group leader or author has totally lost it from time to time.

  • You haven't had any training.

BUT, there's no official family caregiver certification necessary. Caregiving is all about learning-as-you go"¦figuring out what works, discarding what doesn't. Courses, counseling, and lectures can be incredibly helpful, but you still have to go home and cope hour by hour. Good caregiving isn't about having credentials. It's about love and patience.

  • You're fearful of making a mistake.

BUT, your loved one already has a progressive, fatal disease. It's not like feeding dessert first or giving your dad a stuffed dog to pet is going to kill him. To the contrary, it may just enrich his final days. And isn't that your ultimate goal?