My husband Vince is severely brain-impaired by Fragile X-Associated Tremor Ataxia Syndrome (FXTAS), and I have cared for all his needs for over a decade—and still going! We have been married for almost 15 years, and we have no holiday traditions as a couple. I was quite distressed when, on our first Christmas together, he was not interested in getting a Christmas tree, which he always had gotten when raising his family with his first (deceased) wife.
At that time, I didn’t know his mind was already undergoing the beginning stages of dementia, and he was losing interest in everything. Vince’s gift to me was a check (reminds me of the Seinfeld episode where Jerry gives Elaine a check for her birthday, and she exclaims, “What are you, my uncle?!”). I asked Vince if he could at least get me a card to personalize the gift: he gave me a blank card—no writing, no signature. Grrrrrrrr.
In the ensuing years, I did not worry about decorating or doing anything special for the holidays for Vince, since he didn’t seem to care, and I was so overwhelmed by all the caregiving duties and other details of our daily lives. For a few years into our marriage, we would share family celebrations with his grown children because I could still get him (with increasing difficulty) to their homes. Within the past several years, though, all his children have moved out of the area, and Vince has become homebound.
I would always try to make special foods for holidays, because Vince DID appreciate food. But at this point, he eats only pureed food, and has very little enthusiasm for eating—feeding him is a slow, laborious process.
This year, as in past years, I hope to spend a few hours on Christmas Day with my children (two daughters, son-in-laws, and three grandchildren) at my daughter’s house, half an hour from me, while Vince’s aide is with him. It’s always a joyful time for me, whenever I am with my “babies,” big and small, and there is always lots of great food to bring home (some of which I try to puree for Vince).
My Christmas “wish” has always been for Vince to be miraculously restored to health. Aside from that, I would love: to feel appreciated by Vince’s family for the care I have given him over the years; to have people bring me food, or to send me flowers to brighten my house-turned-nursing-home; and for people to realize that Christmas is about Jesus being born rather than the commercial hoopla it has become. It can be terribly difficult for people in grievous situations to cope with all the holiday noise, and we most of all need the gift of others who care about us. Caring is the best gift anyone can give to another person, whether healthy or ill.
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.
Don’t be afraid to come visit us: long-term disabling illness is very isolating, and genetic illnesses are NOT contagious.