Facing Guilt Regarding Caregiving Adjustments

PHI: Recently a woman contacted PHI to ask for advice about how to communicate with her spouse that their current living situation was no longer suitable for her. She felt that she was forcing him into assisted living—something he doesn’t want—and was experiencing guilt about this. We asked our regular columnist, Dr. Machell, what advice she would offer.

Response from Stephanie T. Machell, PsyD: I commend you for recognizing your limitations as a caregiver. As you have experienced, caregiving takes a toll on the caregiver. Rather than feeling guilt over what you can’t do, think of how awful you (and your husband) would feel if you overextended yourself and became ill and/or resentful. Knowing your limits preserves your ability to provide the most important thing a spouse can provide—your companionship and love.

It sounds like both of you feel forced into choosing assisted living. Have you explored other options? Because most people prefer to age in place, a range of services exist to facilitate this. Depending on your husband’s (and family’s) needs, there are programs that provide everything from personal care to nursing care to various therapies. If home renovations are needed there are even some programs that will help defray the costs and/or provide low or no interest loans. And even if renovations are needed, aging in place may be less expensive than assisted living. Insurance (including Medicaid) may cover some or all of the cost. Your local council on aging or other elder service program can provide information and help you consider the options.

If assisted living is the best (or only) option in spite of your husband’s objections, or your husband is also against having home care provided by someone other than you, communicating honestly about how best to meet your needs and his is usually the best approach. Be clear but empathic, provide concrete examples of needs he has that are difficult for you to meet, and emphasize the benefits of these being provided by someone more skilled than you, including allowing you to enjoy each other’s company and preserving your health. Be prepared that no matter how diplomatic you are he may be angry and that you may feel even guiltier than you do right now.

If having this conversation feels too overwhelming, you might enlist others to help. Choose those whose opinion he (and you) respect. If you have friends who have made this transition (especially if they are happy with their choice) you might encourage him to speak with them.

No matter where it’s provided, your husband’s need for increased levels of care likely brings up many feelings about aging with a disability, including grief and fears about loss of independence. It might even trigger memories of his polio experiences. It will help if he feels empowered to make as many choices about this as possible. And if he (or you) feel overwhelmed by the process or feelings it evokes, support groups and/or psychotherapy can help.

Post-Polio Health (Vol. 34, No. 4, Fall 2018)