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|As told by Tom Gillihan...
Helen and I first met in the spring of 1975 when we were eighteen and sixteen. Mature for her age, she was very pretty, and, like me, quiet and shy. From the first time we met, we just seemed to fit together well. Helen lived alone with her mom and had four older brothers already on their own.
She didn't talk much about her dad, only that her mom and dad had been divorced since she was little, both had remarried and her mom eventually divorced again. Later that year, I found out her dad was in a mental hospital in Portland, Oregon, and had something called Huntington's Chorea. I felt badly about her dad, but since I had never heard of that disease, I didnt think it would affect us.
In December of that year, Helen got information from the University of Washington about some research being done on persons with a connection to HD. They requested that she go to the university for some tests. I took her, and they did some basic reflex tests; they found nothing unusual. They also told us more about the disease and her chances of getting it. That was a little scary, but we were young and indestructible. We talked about it, deciding to go ahead and marry partly because we were in love, and partly because Helen could no longer live with her mom. Not knowing Helens fate, we were married on March 27, 1976.
We talked about the risks of having kids and decided all of life is a risk. Even if Helen did get HD, the chances were good that they would find a cure by the time our children were old enough to get it. Besides, Helen's dad was sixty years old now, so we figured Helen had at least thirty years before she would even have to worry about it.
Our first son was born in April of the following year and his brother came along in November of 1978. Things went along great for a few years. We never talked about HD or Helen's dad. It was as if the possibility of our happiness being dimmed by this dreadful sickness did not exist.
A couple of years later we found out that one of Helen's brothers had it. He was thirty four or thirty-five at the time. We couldn't believe how quickly he went down hill. We hadn't seen him in a few years and it was alarming to see him now; this was the first time I had seen anyone affected by HD. Afterwards, Helen told me that if she did get this disease she would kill herself. In August of 1982, we got news that Helen's dad was dying, so we went to the mental hospital to see him. I swore then that I would never let Helen go to a place like that if I could prevent it.
The next April, her brother with HD died at thirty-eight. Tragically, one of her other brothers died in a car wreck on the way to the funeral. This was a terrible time for Helen, but we still didn't talk about the possibility of her getting it. Instead, we talked about our future together, all the things we were going to do, and places we would go as soon as the kids were out on their own. We shared our dreams of all the places we wanted to visit in our travels and about retirement and growing old together.
However, all our plans for the future were not enough however to make a difference. Gradually, I could see changes; she became moody, got upset over little things. As the new decade became a reality, she began to drop things repeatedly. We had always gone for daily walks of two or three miles, time and weather permitting. But now Helen started slowing down on those walks. It was getting harder for her to walk any distance, and we cut our walks to one mile, often even less. She just didn't seem to have any energy even for something so simple as walking.
In the summer of 1994, we decided to check into the testing for HD. Tough Helen was having more problems, she was still convinced that she did not have HD. We went to a genetic counselor, then to a neurologist where they wanted her to have a CT scan (computerized tomography), which is an advanced X-ray technique showing detailed cross sections of the brain. At that point, she changed her mind and didn't go any further. A year later, when she started having severe pain in her lower leg muscles, we went back to the neurologist and then had the CT scan. By this time, the progression of the disease was far enough along that the CT scan showed clear signs of HD. It was almost a relief to know for sure that it was HD causing all the problems and not something else. But this was also the end to our distant future together. Now we only talked about what we would do the next day, or the next week, but not the next year. Because we didn't know if there would be a next year. Sometimes I would think about the future alone and wonder, "how long will Helen be around." I thought about whether I could go on alone after being married for so long, and wondered how I would take care of her, the kids, the house and a full time job.
The following year, Helen deteriorated at a rapid pace. She talked about trying to kill herself several times and even tried once. By March of 1996, she needed a wheelchair to go shopping or out for walks. She could still walk, but was falling a lot. In April, we started having nursing aids come to the house to help a couple of hours a day, to help with meals and medication while I was at work. By July she could no longer stay by herself at all; it was just too dangerous. At that point we began having aids there the whole time I was at work. Her moods were swinging drastically from minute to minute sometimes and it was like living on a roller coaster all the time. You never knew what might set her off. The boys and I walked on egg shells constantly, trying to keep her calm.
Then in the middle of August she went off the deep end. I came home one evening to find her so worked up that she was totally soaked with sweat. Like a woman possessed, she was throwing her body around violently and screaming that she wanted to die and asking me to help her kill herself. It was one of the worst moments of my life. One part of me would have liked to help her end the suffering, but the rest of me didn't want to lose her. I tried for a couple of hours to calm her down, with no luck. I finally gave up and took her to the emergency room at the hospital where they checked her into the mental ward where she stayed for a week. They changed her medications before she came home. In September she started hallucinating badly. Every day she would tell me how terrible the aids were to her, how they were trying
to kill her and how other people were after her. When she decided she wanted to go to a nursing home, I tried to talk her out of it and so did the doctor. But she was convinced that only there would she be safe. With resignation, we visited a few of them around town until she picked the one she wanted. She was admitted in early October, 1996.
It was difficult trying to educate the staff and aids about HD, but they worked hard and have done a good job... considering most of them had even never heard of this disease before meeting Helen. The hard part for me, personally, was just the idea of no longer being able to take care of my loving wife of twenty years. Helen was now only thirty-seven years old; I felt I had somehow let her down. That first day in the home will always stick in my mind. She looked so out of place there. Here she was, still so young, living with all these old people who were waiting to die. When I left that first day, I went out to my car and just sat and cried. I couldn't believe I had really
done this to her. When I got home the house felt so empty and alone without her there. If it weren't for my kids still at home, now seventeen and nineteen, and the on-line support group, I don't think I would have made it.
The kids seem to take all this in stride and go about their own lives. I try to talk to them occasionally about the whole thing with their mom; that they are at risk of ending up the same way. They are young and don't seem to have time to worry or even think about it, so I just try to leave the subject open for when they do have time.
Helen has done pretty well in the home. She has been there almost a year now, and I spend as much time as possible with her, usually four or five hours a day. It is still very hard for me to leave her some days. It's a roller coaster ride, with good days and bad, but we try to always take one day at a time. One especially tough part of this disease is the frustrations of Helens decreasing communication skills. Some days I can understand everything she says, and other days, after having her repeat herself for the third or fourth time, we both get frustrated and give up. I know it is very hard on her when she wants something and can't get anyone to understand what it is. But it is just as hard for me when all I want to do is please her, and I can't figure out what she wants.
I think the hardest part of the disease for me to deal with are the mental problems. I can compensate for most of the physical losses, but the mental ones I can't do anything about. The only way I can cope is to go back to taking one day at a time. Sometimes, on good days, I can still look into her eyes and see the beautiful young girl I married, and it keeps me going back another day. I still love her now as much as I did twenty-two years ago, maybe more.
Some nights I lay in bed looking at the empty place beside me, and wish things could be the way they once were... but I know that they won't. There are days when I awake in the morning feeling sorry for myself, trying to find a reason to get up. Then I think of her, and all she's going through, and the knowledge of her waiting for me to get there and how lonely she must feel. Then I feel ashamed of my self-pity, so I get up and start another day.
Editor's note: On August 12, 1997, shortly after Tom told his story, his beautiful wife Helen passed away in the nursing home.
with permission; Faces of Huntington's
by Carmen Leal-Pock