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|Living the nightmare of HD...
My first knowledge of Huntington's Disease (HD) came in March 1995 when my wife's parents asked us over to their house to "talk." At the time, my wife (32) and I (36) were expecting our 5th child (which was unplanned) and she was having an unusually difficult time emotionally. Soon after we sat down with her parents, her mother announced that her father had seen a neurologist and that he was 99% sure that her father had HD. As they began to explain about the disease (its genetic nature, how rare it was, ...), I became upset when I learned that the neurologist had made such a statement after having been with her father for a total of 20 minutes. How could he know? Wasn't there some kind of test? Why would her parents tell others before they knew conclusively? Her mother explained that there was a test, that her father was scheduled to have the test, and that they would have the results shortly thereafter.
I pleaded with her parents not to disclose this information to any more of their children (they had 6 between the ages of 17 and 34) until they had the results of the test. Unfortunately, this was not well received by her parents. Her father (who had gone through a string of employment disasters over the prior 8 years) was thought by most family members to have suffered some kind of breakdown. I guess my wife's parents were relieved to be able to point the finger at something, even if it was a terrible disease like HD.
It took several weeks for the results to come back (a living nightmare for all involved!). Her father did indeed have the defective gene! During this initial waiting period my wife's mental health continued to deteriorate. Her behavior with the children became very rigid and often times she would scream commands at them: "DO THIS FASTER THAN YOU EVER HAVE IN YOUR LIFE?" or "I'M COUNTING TO THREE...ONE, TWO, THREE!" Her expectations were beyond unreasonable. I spoke with her about possibly getting tested herself and she agreed that knowing whether she carried the gene would help her. (She was always one who handled the known better than the unknown.) However, before having her tested we needed to get her a personal health insurance policy that would remain in place independent of my company's group health policy (she already had life insurance). Unfortunately, no health insurance carrier would insure her while she was pregnant. We ended up having to wait until the baby was 30 days old before we could submit an application (which took 30 days to get through underwriting).
With the new insurance policy in place, we were ready to have her tested. Because of the unbelievable hassles I'd had trying to get my wife insured (including her initially being denied by mistake), I was somewhat paranoid that if she carried the gene and the insurance company found out, they'd try to cancel her policy (through some loophole over time). The only solution was to get her tested anonymously, but how? I contacted just about every genetic testing center in the United States and each one told me that it was impossible to have someone tested anonymously. I thought, "Why not?" aids-testing can be done anonymously. Eventually, I contacted the Genetics Department at the University of British Colombia in Canada and the Director of the Genetics Lab agreed to provide testing under an assumed name as long as the individual went through the normal counseling sessions and neurological examination.
Not surprisingly, by the time she was able to go to Canada for the test, her mental health was not very good. She'd been through quite an ordeal with months of waiting while pregnant and taking care of 4 children. During this time period she started having "anxiety attacks" about me. One day she'd convince herself that I was having an affair, the next day she'd think that I was sexually abusing the children, the next day I'd be planning to divorce her, and the next day I'd be a homosexual. Each of these things were utter nonsense but she was convinced they were true and I'd have to talk her through it until she'd see the light (at which time the next delusion would start). Once she was so sure that I was also married to another woman named Amy (she found another Amy Bishop in the phone book) that she went to this woman's residence and took her mail so she could "catch me in the lie."
The people in Canada were very caring and professional. Unfortunately, they didn't realize that what would have helped her most would have been for her to get the results as quick as possible. They delayed and delayed and finally required that she get an OK from a local psychiatrist before they would allow her to get the results. We went to the psychiatrist who deals with HD and after he met with her I asked him to see if he could get the results for us. He convinced the people in Canada to release the information to him and after 9 months of waiting...she did have the gene! She was also diagnosed "suspect" for the disease by the Neurologist in Canada. I guess that means that he couldn't be certain that she had the disease nor that she didn't. (You gotta love those precise medical terms!)
After receiving the news, my wife and I went on a vacation to the Caribbean. While away from it all she seemed better than she had been for many months. It wasn't very long after returning, however, that she began spiraling downward once again. This time she became inward (frequently taking 3-5 minutes to answer a simple yes/no question). On several occasions she would ask me if I was someone else (boys from her high-school days). She even thought the cook at the local sandwich shop was John somebody (her first kiss) and went back into the kitchen area and kissed him. (I thought she went to the bathroom.) Once a gal from the local department store called and said that my wife was there and that she was not well. Apparently she couldn't write out her check at the register and just stood there. They took her to the stock room where she waited smiling and talking to herself for over an hour until I could be contacted. She told the lady she had been to the doctor and that she was going to have twins.
I knew she was not well and that she needed to see the doctor. Unfortunately, she believed that she was fine and refused to go. I was convinced (after reading several HD stories on the Internet) that if I could get her to see the neurologist and/or psychiatrist, they'd be able to prescribe medication that would help her. It was an ugly time. She started having episodes of violent rage with the children. Since I couldn't leave her alone with the children, I asked my mother to come stay with us to perhaps ease my wife's burden and to provide protection for the children while I was at work. Even with constant vigilance, she would still subject the children to unnecessary physical and emotional pain.
I told my children that their Mom was ill and that if she ever spanked them or the other kids too hard or was scaring them or doing something that didn't seem right, they were to call me at the office or call my brother's house or walk over to one of our neighbors. My then 9 yr. old son said "Right Dad...I'm going to dial the phone while Mom is chasing me!" (I had to laugh.) Later I talked at more length with the two eldest (daughter 12, son 9) and told them that Mom had a disease and that there was no cure. (I didn't tell them it was HD.) They asked me if she was going to die and I said we were all going to die and that probably their mother would die from this disease but not for a long time. My daughter said that it was strange that she knew 3 people with diseases that had no cure...her mom, her grandfather (with HD) and her aunt (with MS).
It was at this point that I went to see the State Division of Family Services (the child abuse people). THIS GROUP WIELDS A LOT OF POWER. At first I wouldn't tell them my name. I described my situation and told them that if they could help me, I'd let them into my life... otherwise NO WAY! I agreed to bring my two eldest children to their offices and have them interviewed so they could verify some of the things I was telling them. After the interviews, they told me that they could help me get my wife to the doctor. I told them that the neurologist who specialized in movement disorders (such as HD) had a 2-3 month waiting list. They called me later that day (after having tried to talk to my wife) and said that they had arranged for an appointment with the neurologist for 4pm that day and that they would help me get her there. The neurologist was unbelievably good (but young!). He asked her questions and waited for the answer. Most people would have fired off three or four more questions while my wife was still processing the first one. He admitted her into the hospital where she stayed for approximately one week. There was no "suspect" for the disease this time...she indeed had the disease (moderate physical symptoms with more advanced psychological symptoms). They began treatment with psychotropic drugs and within 48 hours she became reasonably conversant.
After she returned from the hospital, I was hopeful that things would be much better. Unfortunately, being somewhat conversant doesn't necessarily mean being well. It wasn't long before she exhibited signs of deep depression which caused a very "all or nothing" attitude with her. She would say that if she couldn't be completely well then she'd rather be dead, if she couldn't be the primary care giver for the children then she didn't want to care for them at all, and so on. She spent most her time in bed. At that point, I hired a full-time nanny to help with the children during the day so my mother could go back to her own life (thank God for mothers!). When my wife learned that I planned for the nanny to be "live in," she went on protest and refused to eat and drink. This lasted 2½ days until I took her to see the psychiatrist and he admitted her once again into the hospital (dehydrated) where she stayed another week.
After returning from the hospital, she agreed to allow a "stranger" in her house and so started our first experience with a full-time nanny (Rachel). Unfortunately, Rachel only lasted 3 months. (She gave as her reason for quitting that she could no longer tolerate Amy's abusive behavior with the children.) It was during this time that Amy had a particularly violent episode with our son Craig. It happened over the Thanksgiving Day weekend. The children and I were watching TV when Amy came into the room and asked Craig (then 9 years old) to turn down the volume. Craig didn't hear her and when he didn't immediately get up, she crossed the room and pulled him up off the couch and began to slam her hands down on the top of his head as hard as she could. Craig had no idea why she was hitting him and mostly tried to protect himself. She had hit him 5 or 6 times before I could get between them (at which time she turned her violent rage towards me). I simply grabbed Amy's arms so she couldn't hit me and told Rebecca (our eldest child) to quickly take the rest of the children upstairs. As the children were going upstairs, Amy started kicking and Craig jumped between us and screamed "stop it! stop it! stop it! His mother turned to him (as I held her hands behind her) and 6 inches from his face screamed "I hate you!, I hate you!, I hate you!" How does a child recover from that?
I moved Amy to a room where I could watch her while I called the crisis hotline at the University Medical Center (where she had received prior medical care). When Amy's psychiatrist got on the line, he told me that they didn't have any beds available at the hospital and recommended that I call the police and have her transported to a nearby hospital until a bed became available. He agreed to talk to the police when they arrived so they would take her to the hospital against her will. An hour later I accompanied Amy to the hospital in the back of a police car. When she was admitted I explained to the nurse about her illness and asked her to have the doctors call me when they returned on Monday.
On Monday morning, the doctors called from the hospital and said that they were going to release Amy because they didn't believe her to be a danger to herself or others and they couldn't keep her against her will. "THAT'S RIDICULOUS!", I responded. Just prior to speaking with the doctors I had been speaking with Amy and she was completely delusional (thinking I was someone else and warning me of "the conspiracy"). Even a conversation with Amy's psychiatrist (who specializes in HD) did not convince these doctors so I called the State Child Protection Agency to see if they could intervene. The case worker said to give her a few hours and then call the hospital.
When I later called the hospital, the nurse would not put my call through to the doctors and told me that she had been instructed to transfer me to the hospital's corporate attorney when I called. I spoke with their attorney and he said the hospital was going to release Amy and to come and get her. Before going to get Amy I called the Child Protection Agency and told them that I was fearful of bringing Amy home and wanted to know what they could do. Sadly, they informed me that they could not remove an adult from the home (but could remove our children into temporary foster care if I asked). They recommended that I become Amy's guardian so that I could legally remove her from the home.
I worked around-the-clock to get hearing notices signed by each of Amy's siblings and her mother (who were located in four states) and two days later I was standing before a judge. I called in about every favor I had to obtain an attorney to represent Amy, an attorney to represent me, have the necessary documents prepared, and assemble the supporting evidence (e.g., competency letters from the doctors, a letter from the case worker at the State Child Protection Agency, etc.). I didn't know what to expect when I stepped into that court room so I was loaded for bear. (Amy's mother was with me.) Gratefully, I never had to get the gun out and things went smoothly. In fact, the judge was a wonderful man who showed great compassion for my family's situation and didn't require an evidentiary hearing but rather issued an order granting me temporary guardianship on the spot.
The following week, my parents and I interviewed a woman, Anne-Marie, to replace Rachel as the children's nanny. Anne-Marie had worked as a nanny in Boston, Massachusetts for 1½ years and we were all very impressed with her experience as well as the way she interacted with the children (especially how the children warmed to her). On her first day of work without my mother present (she had come back to help me when Rachel left), Anne-Marie had many difficulties with Amy and later expressed her reservations about continuing as the children's nanny. The following Monday, I moved Amy to my parent's home.
On the weekends, the children and I would travel 50 miles north to my parent's home to visit Amy. The children would tell their mother about their week and I would hear from my parents about Amy's week. At first, Amy seemed somewhat better (as she was no longer obsessing about the children). This was short-lived, however, and within weeks she became very inward; often spending hours starring off at nothing. Once she thought to kill herself by eating an entire jar of applesauce and then ingesting spoonfuls of baking soda (to explode her stomach). On another occasion, she drank a glass of Clorox Bleach (which she promptly threw-up). On another occasion, she faked being unconscious (until my mother noticed her eyes open and close as they were loading her into the car to go to the hospital). One night at 2am, Amy showed up at our house (having taken a taxi from my parent's home). She paid the driver with a check that she had found in the bottom of her purse (from an account that had long since been closed).
After living with my parents for 10 months, Amy moved in with her mother (since her father was now in a nursing home). Once again, she showed brief improvement (even talking about getting a part-time job at a children's clothing store). Soon, she was in difficulty and one day announced that she was joining the military. (She told our 12 year- old son that she wanted to sign up so that she'd be sent to war and killed.) She continued spiraling downward until she landed herself back in the hospital. After a number of weeks there, Amy was institutionalized. For a time she lived in the same nursing home as her sister, Julie (who died in 2001 from complications due to HD). Later she was moved to the same nursing home as her father (who died in 2002 from complications due to HD) where she remains today.
I've always believed that family comes first! These words might seem ironic given what has taken place in my family over the years. The years prior to and following Amy's diagnosis were almost without light. In spite of the many protections I had put in place, everything I had built came crashing down around us. Overnight I found that our entire family savings had disappeared, substantial new debt was discovered, medical bills were mounting, the insurance companies walked away, my company was failing, ... (I could go on and on). Worst of all, I discovered the extent of the verbal, emotional, and physical abuse my children had been subjected to by their mother who was very ill. Suffice-it-to-say that each time I thought there wasn't anything else that could possibly go wrong, something would happen and we'd reach a new "all-time" low.
Even though I'd become somewhat of a master at juggling bills, I remember having the power turned off twice, the gas turned off twice, the water shut off once, etc. All the while, Amy's medical bills were increasing at an alarming rate. (She spent over 187 days in the hospital during the first two years after her diagnosis.) At first, bills would come in her name but were quickly changed to my name (as her husband). Eventually, I found myself being pursued by the Utah State Attorney General who was attempting to collect for the University of Utah Medical Center which was owned by the state.
Since I didn't have the funds to cover the debt, let alone court costs and attorney's fees, I did my best to avoid being served papers to appear in court. I remember making a game out of it with the kids. I told them that if anyone ever came to the door with a clipboard, they were not to answer the door. I can still see their faces as they would run back from the door saying "Dad, it's a clipboard guy!" When I'd get caught opening the door, they'd ask "Are you Robert Bishop?" and I would say "What can I help you with?" and they'd repeat "Are you Robert Bishop?" and I'd again say "What can I help you with?" This would go on and on (one guy asked me 16 times!) until they'd either become frustrated and walk away or they'd say that they had some important papers for Robert Bishop and which point I would say, "I'm sorry, I can't help you" and would shut the door. They tried their best to get me at home, the office, even at Church but were never successful. At the time it wasn't very funny, but I do chuckle about it now.
Christmas 1996 was especially difficult. Amy was living at my parent's home and we had just hired Anne-Marie as the children's nanny. Things were so tight at the office that I wasn't able to cash my payroll checks (there wasn't any money in the company's bank account to cover them). As Christmas Day approached, I wondered how I'd be able to provide any gifts for the children. I hadn't told anyone how bad off we were. One night, there was a knock at the door. When I opened it, there wasn't anyone there but I found an envelope on the porch with three one hundred dollar bills inside. To this day, I don't know who it was who left us this gift but with it we were able to have quite a nice Christmas. In the past, I had always been on the giving side of the equation. Being on the receiving end was much more difficult and was truly humbling.
In the end, I decided that the only way to survive (i.e., provide for Amy's needs as well as protect and provide for our children) was to no longer be Amy's husband. I was told that as long as the disposition of marital assets was not changed because of an illness, whatever the parties agreed to in a divorce would not disqualify a person from receiving assistance. So, I took all the debt, financial responsibility for the children (no child support, medical assistance, day-care, etc.) and she walked away with no debt and no alimony. I was convinced our family would still go under but I had to stop the bleeding (every time Amy landed in the hospital it cost the family $1,500 a day with no insurance).
Due to complications with my wife's family (and here I can't be more specific), it took over two years to finalize the divorce. I'm sad to say that things became so ugly that today Amy's family and I rarely speak with one another (although the children and Anne-Marie and I continued to visit Amy weekly).
In January 2005, Amy Bishop died of complications due to Huntington's Disease (she choked to death while trying to swallow her food). In July of that same year, we sold everything we had (house, cars, possessions) and moved the family to Italy for a two year adventure.