Taking Care of Me | Lewy Body Dementia Association LBDA

Taking Care of Me

By Ginnie Horst Burkholder

We had two extraordinary evenings together. Nelson was alert, relaxed, and smiling. When I walked past his window on the way to the car we blew kisses and shared smiles. It was a level of alertness I hadn’t seen in weeks. So it was a jolt back to Lewy body reality when I arrived the next afternoon to find him sitting on the floor, his back against the bed, asleep. There were multiple chili smudges on his pants. Did any make it to his mouth, I wondered. He looked like a street person hunched over on the floor. No amount of prodding or saying his name would wake him. When I asked a favorite and usually cheerful nurse if Nelson had had a rough day, she half-smiled and said “Kinda, sorta.” It looked like she too may have had a rough day. I asked her if he took a nap, and she said they put him down but he kept getting back up.

When I realized he wasn’t going to wake up for me, the nurse corralled three aides and, with one on each limb, they lifted him onto the bed. Soon after that another younger, more energetic nurse asked me, “How are you doing?” Though I try to keep low expectations of what I’ll find each afternoon when I arrive at the nursing home, it doesn’t always work, especially after a streak of good days. I couldn’t hide how I was feeling, and she gave me a little pep talk about taking care of myself.

I’ve heard this talk often and have given it to other caregivers as well. I know it’s true. I know the grim statistics for caregivers. According to an article published in JAMA (the Journal of the American Medical Association), spousal caregivers – even when the spouse is in a nursing home – have a 65% likelihood of dying before their spouse. I know it’s not selfish to take care of me. I’ve lived the past ten years taking care of myself. I’ve lived making me number one. I take it all seriously.

But it is all beginning to amuse me. Maybe it’s because I wonder, “How else could I have possibly survived this long except by taking care of myself?” Or maybe it’s because I think, “You have no idea how difficult and ridiculous taking care of me gets with my chemical sensitivities on top of the caregiving!” Their suggestions often include shopping or manicures; I can do neither because of my allergies.

One of the residents calls me the “Bag Lady” because I come into the nursing home carrying multiple bags: one with my healthy mostly organic dinner with treats for Nelson, one with the donut pillow for my sore tail bone, one with things to keep me occupied if Nelson sleeps, and then there is always my water bottle in its own carrier with my home reverse osmosis filtered water. While other women arrive with purses, I bring in baggage. It seems that besides going to the nursing home and performing the keeping-life-together tasks and doing paperwork, all I do is take care of me.

My list of “taking care of me” requirements has grown longer as I’ve aged. It’s no longer just the basics like brushing teeth and washing hands. Now I do fifteen minutes of stretching in the morning. I eat oatmeal. I walk several times a week. For socialization I often persuade someone to walk with me, but go alone if I have to. After a few years of bisphosphonates for bone density I heard they have a half-life of ten years. If that means they’ll still be in my body for twenty more years, I figure I’ve had enough. I’ve decided instead to wear weights on my ankles several times a week to slow down osteopenia. I take calcium and vitamins. I eat more organic food, more veggies, less meat, less salt, and some salmon. I have cut out sugar, get plenty of sleep, call friends when I need to talk, do deep breathing to keep my blood pressure down, and meditate to repair telomeres. PBS says studies show meditation does repair telomeres and slows down aging after all. Since I’m alone a lot, I talk to myself, and answer if I want to. Sometimes I watch America’s Funniest Home Videos to get a few good laughs. I pray; I try to think positively; and when I feel a loss I mourn it so the grieving doesn’t go inside and weigh me down. I look back infrequently and think ahead only if necessary. I mean, how much more taking care of myself can I do?

A friend emailed me, “Take care of yourself. This could be a long haul.” I laughed. Could be? Has been! I wrote back and told her I think the way I have survived all these years is by not looking ahead – and added that maybe I’m burying my head in the sand.

She countered with, “As long as the rest of your body doesn’t follow!” Good distinction!

In a chance encounter, or “divine appointment” as a friend called it, I reestablished an acquaintance from long ago. A couple invited me to visit them while she was in the hospital for therapy because they knew their home wouldn’t be a safe environment for me. I wondered if I had the energy for that visit. I decided that twenty minutes would be doable. I ended up visiting for two hours and felt energized afterward.

Perhaps I’ve discovered another observation for my take-care-of-myself list. Sometimes taking care of ourselves looks very different than we expect. And once in a very blessed while, taking care of ourselves is surprisingly easy. The rest of the time we caregivers must live like our lives depend on it.

© 2010 Ginnie Horst Burkholder

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