Caretaker Woes
by Megan Rooney — January 16, 2012
I just returned from a trip to Canada with my father to check in on my 86-year-old grandmother, Babcia.
Babcia means “grandmother” in Polish, her native language. Though she’s lived in Canada for 50-plus years, Babcia still thinks in Polish. She also takes 5-6 different pills a day to manage high blood pressure, anxiety and pain.
During my visit, I began to take note of the many health literacy barriers that prevent Babcia from having a normal medication regimen and receiving the support she needs to truly feel better. Hers is an extreme example, to be sure, but it illustrates well how complicated it can be to help patients with low health literacy navigate the health care system and manage their health – especially when they’re stubborn like Babcia.
Babcia lives alone in an apartment near my uncle’s house in Calgary, but my uncle and his wife are gone for long periods of time enjoying their retirement. My father lives a two-day drive away in the U.S. and couldn’t afford her health care if she moved to the states. Besides, she’s made it clear that she never wants to move again, not even to assisted living.
Babcia’s sons tried to hire a nurse’s aide to visit her once a week, but she didn’t like having to interact with someone she didn’t know, especially on days she didn’t feel well. My cousins who live in Calgary try to help out when they can, but Babcia often tells them not to worry about visiting, though there are hints that she’d appreciate the attention.
At a recent doctor’s appointment, Babcia complained of pain, but couldn’t tell the doctor exactly what hurt. “Everything hurts,” she said. He believed it was anxiety and prescribed her relaxers and prescription painkillers. Now my grandmother relies on these drugs to get by, but cannot remember to call ahead to refill her prescriptions. So every few months, she deals with terrible withdrawal. She only takes her pills when she feels bad, despite our efforts to explain the importance of a regular regimen. She doesn’t want the pharmacy to organize her pills by day.
Babcia’s mind wanders, often to stories from the past that she’s told us millions of times, and it’s hard to bring up something new, like how an ice pack can comfort her swollen knee.
It’s clear that Babcia is fiercely strong willed. After all, she’s a World War II refugee who had to forge a new life in Canada, but remained enclosed by the Polish community and her family. Yet, she desires care, claiming her greatest regret is that she never had a daughter who could take care of her like she did for her own mother.
As her family, my father and I left Babcia with refilled prescriptions and an encouraging discussion that resulted in her saying she might be willing to have a nurse visit her once a week for half an hour. My dad agreed to call her every day and ask about her pill supply.
We face an ongoing battle. But it’s one that’s worth it. Research shows that family involvement is one way to ease at least some of the worst health literacy barriers that can lead to poor health outcomes. We continue to try to do that for Babcia.