The Spousal Caregiver: No Easy Answers

In our modern society, we like to think there’s an easy answer for every problem. Technology and manufacturing—and drug companies—are always trying to come up with new solutions, even for problems that don’t even exist yet. They create the new drug or the new tech app, and then try to convince us that we need them.

As an overburdened caregiver for my husband Vince who is totally disabled by the genetic condition FXTAS, I’m lucky if I can find ANY answers to some of my challenges, let alone an “easy” answer. Throughout my intense years of caregiving, so many well-meaning friends, family members, and even doctors, have suggested a nursing facility for my husband if it is too difficult for me to care for him at home (as if I didn’t know that these facilities exist!). For me, this would not be easier. Vince is completely content at home. He has no health issues other than a nonfunctional brain, so he is in no pain, either physically or emotionally. I have home health aides several hours every day to help me get him showered, dressed, fed, moved around the house, and out to his doctor appointments. This also allows me time to get out of the house for shopping or seeing friends.

As for the nursing facility option, I have to laugh at the word “facility,” as it comes from the Latin word for “easy.” Placing someone you love in such a facility is anything but easy in so many ways. Emotionally, it is so difficult on both the caregiver and care receiver. Once the person is in the facility, the responsible family member must constantly be vigilant about the care. My husband cannot speak, and he is totally placid—it would be too easy for him to be overlooked in a facility.

I imagine that I would be constantly upset with the staff, battling a frustrating bureaucracy to advocate for his care. Infections run rampant in such facilities, and they are notoriously understaffed, with overworked nurses and aides. I know this because I know many people who have had to use this option, because they sadly have no way to care for their loved one at home. It is possible that a day will come when I cannot continue to care for Vince for any of a number of reasons, but meanwhile my better of two difficult alternatives is to care for him at home: we are both happier that way. I want to be with him, and I suspect he wants to be with me, despite his inability to say so.

We live in a society in which we are spoiled, and I am as spoiled as anyone else. Sometimes, there are just not easy answers; in some situations, all alternatives are difficult and unpleasant. So, I try to go minute by minute, doing the best I can, and surprisingly, moments of grace and relief come along, which are so welcome and appreciated because the default situation of my life is so difficult. The more hardships I am forced to overcome, the sweeter I find those quiet moments of peace.

About the Author

Terri Corcoran lives in Falls Church, Virginia, and has been a full-time caregiver for her husband, Vince, since 2004. Vince is severely disabled physically and mentally by the genetic condition Fragile X-Associated Tremor Ataxia Syndrome (FXTAS). Terri is on the Board of Directors of the Well Spouse® Association (https://www.wellspouse.org/), which offers support and resources for spousal caregivers.

She also serves as the association’s PR chairperson and the editor of their quarterly newsletter Mainstay. She has published articles and has been interviewed for magazine articles and on radio shows about FXTAS and the unique challenges of spousal caregiving.

Although not formally trained in caregiving, Terri has, by necessity, become well-educated in the trials of family caregivers.