I am presently on mental overload. Since this overload is using up most of my brain space, it’s all I can write about now. I started blogs on two other subjects which were going nowhere, so I’ll revisit them another time.
Every day of caregiving for my husband Vince is extremely trying—physically, because he can do nothing for himself, and emotionally, because he doesn’t speak or have much communication at all with me. Thus, my default daily situation is exhausting. There is always so much for me to think about just to keep Vince and me afloat through everyday.
His food needs to be pureed, so what foods to buy and how to combine them into healthy, edible pureed meals takes up a huge amount of my energy and mind power. I have to handle all Vince’s medical issues, as well as all house repairs and finances, which are never-ending challenges. Every day I have a plan in my mind of the priorities to be accomplished, and I need to constantly be flexible, as my days rarely go as planned. I feel like my brain is a computer, which is constantly doing complex calculations. I have home health aides several hours a day, who are a great help, but some days or weeks, lots of extra stressors add up, resulting in too much negative stimulation for my brain.
I love to write, and it’s one of the things I do to enrich ME, but it can become a chore when my time is limited and my mind gets too overcrowded. I do a lot of work for my Well Spouse® support organization, which I also enjoy, and I am the secretary of my church’s women’s group. Recently I wrote a long, involved story for the National Fragile X Foundation newsletter, which took a lot out of me. Sometimes all my extracurricular activities pile up. The caregiving chores are non-discretionary and must be done every day. Then when too many of life’s inevitable but unexpected annoyances enter the picture and build up, I melt down from the stress.
A few days ago, I tried to deal with the obligatory health insurance changeover and became outraged by the increase in my premiums, in addition to running into snags on the insurance website. My computer then started acting up, not sending emails, which entailed my spending a lot of time on the phone with the internet provider and getting no real resolution. I couldn’t even open a new bottle of toilet bowl cleaner when cleaning the bathroom! Some days, everything seems to be fighting against me.
Yesterday afternoon, I felt the tension rising inside me and everything in me screaming, “Stop the world, I want to get off!” So I put aside the health insurance until a later date, turned off the computer, turned off Vince’s TV, sat down and cried for an hour. Then I was able to get myself up and moving again. Sometimes you just need to turn off the stimulation to the brain because it becomes harmful. Quiet and crying can be very healing—they are for me.
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.