Oct 3, 2015

Alzheimer's Caregiver Respite Is Not Optional

“Good enough” is enduring 25 minutes of mean and nasty and unrelenting remarks on the drive to an adult day program twice each week.

By Pamela R. Kelley
Alzheimer's Reading Room

I'll take care of you | Alzheimer's Reading Room
Those of us who turn to The Alzheimer’s Reading Room as caregivers are making every effort we can to do right by our loved ones afflicted with dementia.

We sacrifice much in pursuit of the goal. We’re focused on trying to provide loving care, and trying to create some ease and contentment for someone we love who needs a lot of assistance.

Respite is essential. We’re in it for the long haul, and we have to last.

When our tank runs to empty, we simply cannot perform our roles with the same kind of enthusiasm or grace that we try to bring to the effort. We need to be able to restore our spirits so that we can bring our best efforts to bear.

Respite revives us. Without it, we display our exhaustion in our expressions, in our voices, in our tones and in our moods. And our loved ones often mirror what we display.

In our house, no respite leads to an irritable Pam. Irritable Pam leads to very unhappy Audrey. It infects everyone.

That’s why we’re often our most discouraged when our respite plan falls apart. It happened to me last month. And then this morning I read the article Bob posted, asking us what advice we had for the caregiver whose ten hours of weekly respite care just evaporated. I wrote a little comment then, and it felt familiar – as though I was talking to myself.

The caregiver who’d put in the time to reach a rapport with my suspicious and unwelcoming mother had to leave the state. A new caregiver needed to be brought on board. We were looking to fill ten hours of time, two five-hour shifts. We have been working on restoring the balance for three weeks now. We’re not there yet.

We’ve been through three potential caregivers in that time. The first showed promise, but then didn’t show up to cover her shift twice in the same week. Dependability grade: F. Back to the drawing board.

The second caregiver could not tolerate the ethnic name-calling that is part of my mother’s Alzheimer’s influenced vocabulary. She notified me of this one-hour into her first shift.

Today we’re trying the third, and she seems to be making a very valiant effort.
I’m concerned that her accent is impenetrable to my hard-of-hearing mother

It’s the respite challenge. How can I reclaim the hours I need every day to keep my spirits up, to keep my enthusiasm high, to maintain my good cheer? I start from this point: Respite is not optional. I know how much I need, and I’ll invest as much energy as I must to maintain the base.

I have an idea about what’s optimum for us. And I know that I live with my mother in Alzheimer’s World, where the optimum rarely occurs. It remains the goal, a kind of organizing principle. Right below optimum resides “good enough”. And that’s normally where we operate.

Here’s an example. It’s good for my mom to have more people in her life than just me. “Optimum” would be that my mother would willingly be in the company of someone other than me. Truth is, she’s not willing. But her unwillingness can’t be a barrier to my getting respite. Her objections need to be white noise to me.

“Good enough” is enduring 25 minutes of mean and nasty and unrelenting remarks on the drive to an adult day program twice each week.

Sometimes when I return to the car after our drop off, I really do sit behind the wheel and wipe tears. Then: Deep breath, start the engine, and reminder to myself that it’s “good enough.” The message is validated when I pick her up at the end of the day, and she’s beaming. Those are the days when she proudly introduces me around to the amazing women who staff the program. She chats amiably the entire drive home. This occurs more often than I ever expected.

“Good enough” is pretty darned good. But we don’t achieve “good enough” without respite.

Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Ms. Kelley lives, works and writes in Anchorage, Alaska.

More Insight and Advice for Caregivers

Original content Bob DeMarco, the Alzheimer's Reading Room