I married Vince in 1999 when I was 48. This was my second marriage and I thought I had it figured out this time around. We felt like we belonged together. Although Vince was 16 years older than I, we had so much in common on so many levels, and the differences we had complemented each other. He brought out the best of me and made me feel comfortable in my skin for the first time in my life.
The work I did with him—organizing international conferences of laser scientists and publishing an arts-news magazine—brought out skills I didn't know I had. And, I think somewhere inside of me, I felt he needed me, although I didn't know how extreme that need would be. I knew that marriage was hard work, I just didn't realize it was going to be this kind of work.
Early signs and changes
Soon after we married, I noticed that Vince started making uncharacteristic mistakes at work. He was a self-employed scientist who had been successfully building lasers for companies all over the world for over 10 years. But now it seemed that he couldn't quite get the jobs done; one laser he built for a company in Europe kept being returned to him because it was not working properly. Vince just kept tweaking it and sending it back. Not knowing anything about building a laser, I didn't speak to him about it. I also found myself doing more and more of the work we once shared in organizing our annual conference. I figured he was just losing interest or bored because he had been doing it for so long.
Then the physical changes surfaced. A month after we got married, Vince fell down playing golf. I wasn't with him and he couldn't explain why he fell. A few months later, he fell again. Sometimes we'd be walking and he would just stop. He would have to sit down and rest for a while before we continued. I figured it was a movement problem and thought we should see a neurologist. His primary doctor didn't want to refer him because they thought it was just old age. He was 65. That's not old. He was perfectly strong and healthy at the time.
On top of all this, there were emotional changes, too. When we met, Vince was a sweet, loving and passionate guy. But out of nowhere, he'd act like he was mad at me for no reason. Once, we were at the theater and he clammed up like he was angry at me, but nothing had happened. I was afraid to ask what I did. He just wasn't the same person after we got married, and I couldn't put my finger on it. I would try to talk to him about it, but he was as clueless as I was about what was wrong. He'd get upset because I was upset and he didn't want me to be unhappy. I knew I really loved him and he loved me, so I was puzzled.
A medical mystery
At first, I thought the physical and mental issues pointed to Parkinson's and so did the initial doctor. He gave him Parkinson's drugs but they didn't help. The second doctor thought he was having small strokes. Then we went to another doctor who said no strokes, just old age, try physical therapy. That didn't help. I also found out his finances were a complete mess around this time. He was buying things from telephone marketers, such as an internet service that he was charged every month for (and he wasn't using the internet!); stockbrokers from New York were cold-calling him and getting him to invest in whatever they suggested—they had him constantly buying and selling until I put an end to it. One local con man stole huge amounts of money from Vince, promising an exorbitant return on bogus investments, until I found out and put an end to that also.
I made Vince retire in 2002 because he couldn't keep up with the business demands, although he thought he could. Plus, he was getting even shakier on his feet. In 2003, we went to Philadelphia for a weekend and he fell in a parking lot and broke his arm. As the arm healed, he went to physical therapy, but he'd just sit there and stare blankly, not able to follow instructions.
Answers at last
After five years and five different doctors, we were finally referred to a neurologist who provided some answers in 2004. I sent Vince's records to him ahead of time and when we got to the appointment, the doctor said he already had an idea of what this could be. He had just read a new paper published on the newly-discovered Fragile X Tremor Ataxia Syndrome, and asked if there was any mental disability in Vince's family. I said, "Well, his grandson has this Fragile X thing..."
The medical community knew what the syndrome was in children, but what they didn't know until 2001 is that relatives carrying this gene could have a pre-mutation. This meant that the gene wasn't fully mutated and it'd act up in old age rather than early in life. As you get older, the gene mutation starts killing off your neurons, which explains the physical and mental symptoms. The doctor said he thought that's what Vince had. We got a DNA test which confirmed the suspicions. I then got in touch with the experts in California who discovered it and sent them his records. They wanted to see him, but by this time, he couldn't walk and we lived in Virginia. I told them he was too disabled to travel. So we met with them once briefly in Washington, DC.
Becoming a full-time caregiver
Since the syndrome in adults was so rare, Vince was often the only patient in a neurologist's practice with the issue, and we bounced around from one local specialist to another. I ended up doing a lot of online research so I could suggest new ideas to the doctors. I also decided to leave my job at an ad agency to stay home and take care of him full-time.
For a while, I thought it was just a movement disorder, so I still didn't realize why he was acting strange. Then, in 2005, he didn't know my name and I freaked out and called the genetic specialist in California. She said that they were discovering that dementia is a part of this syndrome. (The experts were learning along with us.)
At that point, she also told me that I might want to start looking for a nursing home as he would probably need one in about three years. I thought, that's not happening. This is our marriage, we have to be together, and no nursing home is going to split us up. That's when I made it my mission to keep our marriage intact by supporting and loving him at home.
Making the house a caring home
Starting in 2005, I had home aides who would help me with the physical parts of caregiving, like getting Vince out of bed in the morning and getting him to the bathroom. (I called them his bodyguards.) I installed stair lifts for the stairs and purchased a power-lift recliner for him. He needed a wheelchair to go anywhere. We had bonded early in our relationship over our love of theater and the arts, but we gradually did less and less, as it was physically too difficult for me to take him places, and he was not mentally aware.
I remember one time in 2010, he wasn't communicating very well, but I said "what do you think of our crazy life?" and he said "I think it's great." I wrote that down and I still think of it today. It was a crazy life, but we were together and I did my best to keep him as healthy and as happy as possible. I cooked him healthy food and hired a private therapist to come in every few weeks to work with him. I read humor books to him; I sang show tunes to him and I danced around the house for him.
The nighttime was the one point in the day where I could halt my caregiver responsibilities and just lie in bed with him. I looked forward to that time all day long. No matter how bad the day was, I'd think, tonight we can be alone in the quiet. It was like we were on even ground again.
Communicating in a new way
I made it a point to tell him everything that was on my mind, even when he couldn't really respond. If I had a meltdown, I told him "It's not your fault." I just kept communicating with him even though he couldn't talk. I told him that this is how we are having a marriage: I would tell him what was on my mind and his "job" was to listen since I was putting everything I had into caring for him. He never seemed upset, so I felt free to express what I was feeling. It was frustrating because sometimes I barely got a reaction, but when I did, it kept me going. Every once in a while he'd put his hand on my knee or show affection. That felt terrific. The last five years of his life he didn't speak much, but he'd say "I love you." The last year or so he couldn't even say that so I'd say "How much do you love me?" and he'd say "with all my heart."
Gradually Vince's brain shut down and he died in 2016. At first, I was angry because we never had a life together without illness. But I also felt a sense of accomplishment. I thought, "I did it. I finished the race." I wanted us to remain together. I just couldn't put him in a strange place. He couldn't speak for himself and I just could not imagine moving him out of his house – it felt cruel. I feel so gratified that I was able to take care of him to the very end.
Our 16-year marriage was heartbreaking in many ways, but when I step back and look at it objectively, I see the higher purpose. I gave Vince the best life possible. Most important, I developed a relationship with God through Vince's church, which I joined in 2004. My values are so different than what they used to be. I can see now that this was the bigger plan all along.
What I want all caregivers to know
It's very important to have other people that will understand what you're going through. Caregivers need people to talk to and people who will listen. The first time an acquaintance gave me advice about caregiving, she said "take care of yourself." That's the last thing I wanted to hear at the time. Obviously you want to but often you just can't. The best advice is to find other people who will understand so you aren't isolated. Luckily in 2005, I found the , which is a peer-to-peer support organization for people taking care of spouses/partners with chronic illnesses/disabilities for the long haul. The friendship and understanding I found in this group sustained me in my caregiving journey, and they still do, as they offer continuing support for "former well spouses" who become widowed.