The Spousal Caregiver: Caring for ME

When I realized over a decade ago that my husband would be ill for the rest of his life with Fragile X Tremor Ataxia Syndrome—the genetic condition which has gradually destroyed much of his brain function—I was suddenly thrust into the role of his caregiver—and I was CLUELESS, about everything! A friend who worked in the geriatric field gave me the phone number of someone who could supposedly help me. All this “helpful” woman could tell me was, “Take care of yourself.” Okay . . .?

Throughout the years of caregiving, I’ve learned how important my own self-care is, and I’ve gradually figured out ways to hold onto my physical and mental health. Caring for a spouse who can do nothing for himself and who cannot communicate with you will wear down your body and brain if you are not mindful and respectful of your own needs. If the “well” spouse falls apart, then you have two sick people and no caregiver.

Most important and most difficult for me has been learning to appreciate and respect myself and to be compassionate with myself—this eliminates any guilt that maybe I’m not doing enough for my husband. I treat each day like a marathon, pacing myself to allow time-outs from caregiving to do what I enjoy and what reenergizes or relaxes me: I like to read, so my mind can travel away; I try to spend 10 or 15 minutes a day singing with my piano (in the late afternoon, when there are no aides in the house!); I do a workout every day for 20-30 minutes with my collection of DVDs (a variety of dance, aerobics, toning, etc.). Because I have aides several hours each day, I can get out to do the shopping, and often have lunch with friends. I also make time for prayer and time with God every day to settle down my stress, fears, and anxieties. My house is not well decorated (it looks like a nursing home), but I made a small reading room for myself with a couch where I can get some peace.

Eating well and sleeping enough are very critical to my mood and coping ability. This is easier said than done, but I do my best. I try to eat nutritional foods, and I never stay up late doing chores—whatever doesn’t get done during the day has to wait till the next day. This brings up another critical point—I’ve learned to establish priorities and let go of a lot of unnecessary chores.

Emotional support has been extremely crucial for my mental survival, as every day I mourn the loss of my husband’s mind and personality. I’ve become very active in the Well Spouse® Association, a fantastic community of people living difficult lives similar to mine, caring for chronically ill spouses. Writing has been a healthy outlet for me to keep me connected to the world; caregiving can be extremely isolating. A low-dose antidepressant and talking to a psychotherapist also helps!

It is so easy to lose yourself when responsible for the total needs of another person. Self-care will be different for every caregiver, depending on what works for you. But in such a situation, you are forced to get to know yourself in the deepest way, in order to determine what activities, what foods, what groups of people, etc. will help you maintain yourSELF and enable you to still be a whole person apart from the caregiving role.

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.