- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
My whole marriage to my husband Vince can be described by one acronym: FXTAS. Our wedding was in April 1999. It was a second marriage for us both, and we weren’t youngsters (I was 48 and Vince was 64), but I thought we were both healthy. We had no inkling that Vince’s mind was already deteriorating from FXTAS.
Vince’s first blatant physical symptom appeared a month after our wedding when he fell down while playing golf, without knowing why. He occasionally fell again in the ensuing months when exerting himself, and gradually started having trouble moving his feet to walk.
The cognitive symptoms had actually started taking hold of Vince’s brain a few years before our marriage, but this only became evident to me in retrospect many years later. I had never known anyone with a cognitive illness, so that possibility never occurred to me when I saw Vince gradually losing interest in his work, having small auto accidents, or having occasional irrational anger outbursts. At least he didn’t forget to show up at our wedding!
We began married life in Vince’s house, which resembled the ramshackle junkyard on TV’s Sanford and Son. He had promised to fix it up, but it never happened. His daughter eventually helped me make the house livable.
Vince once screamed at me for trying to throw away an old plastic cereal bowl, and I cried. I did lots of crying in those first years, and often felt terrified at the situation I had gotten into. My gentle, loving husband just wasn’t the same person—he would lapse into episodes of apathy and withdrawal from me. I would try to talk to him and he would stare at the TV and not answer. Still not thinking of dementia, I was afraid that I had been misled about who he really was.
Meanwhile, other strange things were happening. I began noticing that my brilliant PhD laser scientist husband was losing track of his finances—we almost had our water turned off and our homeowners insurance canceled because Vince hadn’t paid the bills. He was buying things he had no use for from telemarketers and making crazy investments with con men that caused us huge losses.
I started taking Vince to neurologists in 2001. His brain MRI report had several comments indicating abnormalities, but it would take over two more years of exhaustive tests, incorrect diagnoses, useless attempts at physical therapy, and five neurologists before the FXTAS diagnosis in 2004. We were both greatly relieved to get a diagnosis, and this being a newly discovered condition, we had no idea of the challenges that lay ahead. In a way, I was glad that Vince had something “new,” because it wasn’t an immediate death warrant; maybe I could do my research and be creative about managing the illness.
I like to think that
I saved Vince’s life
and he saved my soulI found Drs. Randi and Paul Hagerman on the Internet and contacted them. By the time Vince was diagnosed with FXTAS, he was too disabled to travel across the country to take part in their studies at the UC Davis MIND Institute, but I sent them his MRIs and a blood sample for their research. They recommended medications which Vince’s doctors prescribed. I also became acquainted with MIND’s Louise Gane, the kind and caring genetic counselor—I had called her in a panic when I realized that Vince didn’t even remember my name! She gently confirmed the dementia I hadn’t recognized.
As Vince’s balance and walking continued to worsen, bladder and bowel incontinence joined the fray. But it was his mental decline that was by far the hardest aspect of FXTAS for me to accept. As I saw him get confused about where he was (he often thought our house was a hotel), who I was (he often thought I was his daughter), and lose his ability to write, speak, or have any emotional responses (blank expression), I did not know how I could ever cope. I was rapidly losing my husband’s whole persona, and I was inconsolable.
There was nothing in this world that could replace Vince’s mind—except, that is, for the relationship I began to develop with a God whom I had never believed in. Vince’s church reached out to me; his priest visited and spoke with me and gave me books which drew me into a conversion to the faith. As I felt God hold me up and answer prayers, I began to have some confidence that I could manage this life with God’s help. I also found the Well Spouse Association, a support organization for spousal caregivers that brought me life-saving friendships with people who were entrenched in situations similar to mine.
As turbulent as everything was, I was determined to keep Vince at home and care for him in the best way possible. I kept my resolve to do my research and harness whatever resources I could find. That included a nutritionist for dietary recommendations, handicap modifications to the house, whatever physical and speech therapy Medicare would provide, and home health aides.
It took about a year (2005-06) of trial and lots of error to find a nursing agency that could provide the right help. I finally obtained a strong young man who is still with us most every day. Another aide comes in the evenings. I can handle Vince by myself overnight and for a few hours in the late afternoon.
When Vince’s decline got to the point where I felt everything was lost, my attitude changed to thankfulness for what was still left. For several years, he was able to tell me he loved me, and he often did. Now, I’m just thankful for any random word he may say or any step he takes (he is still able to take some walking steps with help from the aide and me).
Since becoming completely disabled—unable to do anything for himself, including feeding—Vince has been very peaceful and content, and as of today, he is still generally healthy, aside from the FXTAS brain damage. He is not in any pain, and seems to have reached a plateau a few years ago, where things have remained more or less stable. He has days when he looks relatively alert, and days when he sleeps more. He spends the days in front of the TV, sometimes looking at newspapers or magazines, and sometimes playing with put-together toys. He looks great for a very disabled 79-year-old! He also maintains a steel-like strength—probably helped by the testosterone injections I give him twice a month.
The whole experience of our FXTAS marriage has been extremely difficult for me—physically, mentally and emotionally. But with God’s help, I learned that I could get through this ordeal one day at a time, establishing priorities and respecting that I was doing enough by doing my best.
As long as I have my aides, we have a workable daily routine, and I’ve been able to get out most days to shop, see friends, and take on many volunteer responsibilities for Well Spouse.
I try to take care of myself with a decent diet, exercise (workout DVDs at home), and time here and there to read or sing with my piano. Life in general is a little calmer for me now than in earlier years when everything was coming at me at once—major house repairs, financial and legal knots to untie, and frequent calls to the rescue squad to pick Vince up when he fell. My greatest challenge now is having to purée Vince’s food, because of the chewing and swallowing problems he developed a few years ago. I spend a good part of every day cooking, puréeing, and washing blenders and pots, but Vince has done well eating my culinary “creations.”
There is no part of our almost-15-year marriage that FXTAS has not affected. I know we still love each other, and every day with Vince is one less day without him in my life. He doesn’t speak to me, but I tell him everything that’s on my mind, and he listens. And I can still feel comforted by his strong, quiet presence beside me.
More than anything, I’ve wanted for our marriage to have some kind of transcendent meaning, since it never was and never will be normal. I like to think that I saved Vince’s life and he saved my soul: I have preserved the best quality of life he can have, and his FXTAS has challenged me to grow spiritually and in so many other ways. We do have a special marriage.