The Spousal Caregiver: Wife or Nurse?

Practically since the beginning of my marriage to my husband Vince in 1999, I have been not only his wife, but also his nurse, housekeeper, cook, shopper, financial manager, property manager and “pretend” doctor. Sometimes, I also feel like his mother. Certainly I did not imagine I would have to fill all these extraneous roles; but the symptoms of FXTAS (Fragile X Tremor Ataxia Syndrome) first appeared within a month of our wedding and gradually accelerated until Vince needed my full-time care by 2004, as he was severely impaired physically and mentally by this genetic condition.

Vince’s brain degeneration affected our communication with each other from the very beginning of our marriage. Even before I realized Vince had an illness, he was becoming apathetic, lethargic, had irrational anger outbursts, or just withdrew in front of the television. Gradually, Vince lost his ability to put together words to speak; at this time, he may say only one or two words very occasionally. Over the years, he lost the ability to do anything at all for himself, let alone do anything for ME.

I’ve worked hard to keep Vince basically healthy, apart from his dysfunctional brain. He’s as comfortable and content as could be, by virtue of all my nursing activities (no, I’m not a real nurse) and my total management of every aspect of our lives and our home. I, however, have been completely heartbroken that our marriage never was and never will be a normal, sharing relationship. Frustrated and angered by Vince’s illness, I have nevertheless been determined to still be a “wife” in some ways; I always knew we loved each other, and I would not give up on the marriage.

Since Vince can’t actively participate in our life together, I try to find what he CAN give me, and to be aware of the gifts that he and his illness have ironically given me. He was always a very strong, peaceful person, and he still is; just being next to him and holding his hand can still give me comfort. Before the illness, when we worked together, Vince taught me so many things and developed talents I didn’t know I had. I like to think that even now, he is the “wind beneath my wings,” always challenging me by virtue of his illness, even as he just sits practically motionless, day after day. And I always communicate with him, even though that communication has largely consisted of my telling Vince what is on my mind, and letting him listen. He does listen—he can’t get up and walk, so he is my captive audience. I share all my ups and downs with him, and he does understand what is said to him. If I’m complaining about having caregiver overload and exhaustion, I always assure him that I know it’s not his fault—it is the illness which has affected us both. He will sometimes take my hand and show some sympathy if I am very upset and crying. I’ve learned that if I need a hug from Vince, I just hug him or give him a kiss, without expecting a response from him.

The highest purpose of marriage is for the partners to enrich each other; in that context, our challenged marriage is very meaningful. I have saved Vince’s quality of life; and he has saved my soul, by leading me to a real belief and dependence on God. It hasn’t been much fun, but our marriage consists of bearing his illness together—which makes us husband and wife in the deepest sense. . . . And, I always tell Vince that when we get to heaven someday, WE’RE GOING TO TALK ABOUT ALL OF THIS!

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 (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 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.