Resources for Partners in Caregiver Roles

Question: While I feel like there are a lot of resources for polio survivors, I’m curious where spouses can turn to for help? My husband requires a lot of help around the house. I’m getting older, too, and it’s becoming more physically and mentally taxing. I want to be a good caregiver, but sometimes I feel burned out.

Response from Stephanie T. Machell, PsyD: Part of being a good caregiver is recognizing and respecting your limits. Trying to do it all leads to neglecting self-care and ultimately to the burnout you are already beginning to experience. Yet trying to step back and delegate some of the tasks and care you are providing may make you feel guilty, especially if your husband resists the idea of “outside” help.

Before things get worse, it’s time to reassess what you’re doing. Discuss your concerns with your husband. Though it is tempting to do so, don’t minimize how difficult things are becoming for you. If he is resistant to the need for help other than yours, remind him that your ability to provide this is contingent on your own well-being and that if something happens to you, he will end up depending exclusively on others for assistance. Pointing out that studies show that partners taking on more caregiving responsibilities interferes with romantic and sexual feelings may also help!

Together, make a list of everything you both do to maintain your household, including any personal care you provide for him. Consider the time and labor involved in each task and the level of difficulty you and/or he have completing it. Discuss your preferences for doing the task yourselves versus how much you wish someone else could take it on.

Decide what you want to delegate and to whom. Family members or friends might be able to take on some tasks, but for more major or skilled assistance you may want or need to hire professionals. If there is a medical necessity for either or both of you, services such as homemakers and home health aides may be paid for by insurance when ordered by a physician.

Another essential but all too often neglected part of being a good caregiver is prioritizing your own health and well-being. This means getting adequate rest, exercising as you are able, eating (mostly) healthy meals, making and keeping medical and other appointments, maintaining your social connections, and taking time to pursue your own interests.

It is important to have supportive others who understand what you are going through. Friends and family who are also caregivers can provide support and camaraderie. Though rarely specific to spouses of polio survivors, there are support groups available for caregivers through senior centers, councils on aging, many hospitals, and some churches. If your husband attends a post-polio support group, request a parallel group for spouses. And there are mental health professionals who work with caregivers.

For more information, check out the PHI website (www.post-polio.org). Under the Resources tab of the menu, you will find “Post-Polio Health Care Considerations for Family and Friends.” It provides comprehensive information on caring for a family member with polio and links to further information and resources, including relevant past newsletter articles and talks. It includes a navigation tool you can use to zero in on your specific concerns.

Post-Polio Health (Vol. 39, No. 3, Summer 2023)