Bursack: Caregiver with chronic pain must limit the type of care they provide
Dear Carol: My 80-year-old mother had a stroke two years ago and lives in a close-by nursing home. I’m happy to visit her and make sure that her needs are met, but that’s not enough for her. She says it’s my duty to take her to the mall and other places to shop.
She’s a large woman and taking her out in this way means getting her in and out of the car as well as wrestling a wheelchair in and out of my car trunk. I have fibromyalgia and body-wide arthritis, but she’s never accepted my health challenges. I’ve offered to take her for drives since the nursing home staff will help her in and out of the car, but I’ve explained that taking her shopping is too hard for me. This isn’t the only challenge that I face with her, but it’s a big one. I’d like to make her happy, but doing what she wants invites disabling flairs in both of my conditions. What is my duty? — LY.
Dear LY: You have my sympathy in your battle with both of these potentially disabling diseases. It’s sad that your mother can’t acknowledge your health challenges, but that’s who she is and that’s not likely to change. This means that it’s up to you to enforce limits that protect your own health regardless of her attitude.
It’s understandable that she may want to go out to shop since that’s something she enjoys. If your community has a paratransit bus system of some type, you could look into using that. You could either ride along or meet your mom there.
What I consider your “duty,” as you put it, is similar to what I tell other adult children in difficult situations: Be your mother’s advocate to make sure she’s getting reasonable care in the nursing home.
It’s easiest for everyone if you offer the staff a friendly attitude, letting them know that you will be a care partner for your mother and that you want to work with them in keeping her as content as possible. Having said that, if you note true neglect or any type of abuse, naturally, you need to speak up.
If she likes to be active, talk with the activities director to see what they have available and then encourage her to take part in what interests her. You could even suggest that others like your mother may enjoy an outing to the mall. Finding volunteers who can help could be difficult, but if they have an active auxiliary, there might be people in the organization who could contribute their time or a wheelchair-accessible bus.
Mostly, just keep doing what you are doing, which seems to be helping your mother have the best care experience possible. Part of that responsibility is to take care of yourself not just for you, but so that you can continue to perform the most important function for your mother — which, I repeat, is being her advocate.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.