Chapter Three: Southern Life
The first week in a new home is like a vacation. Then reality sets in. Allison and I spent the first week in Warner Robins trying out every buffet restaurant in town. There sure were a lot of them! Eating out and putting possessions in their new places made our first week in Georgia pass quickly with little fanfare. After that glorious first week the reality that Allison still had Huntington’s Disease began to set in. One evening Allison decided that she was going to walk to her grandparents house about a mile away. She left without telling me. This journey entailed crossing Russell Parkway, a very busy four lane road carrying traffic to and from Robins Air Force base. Allison panicked and didn’t make it across the road causing a traffic tieup and attracting police attention. The police brought her home and I had my introduction to Warner Robins’ finest. I explained HD to them as best that I could and hoped that we didn’t meet again soon.
During our first month in our new home, Allison had her first appointment with her new primary care doctor and also met the folks at the local social security office. Based on her still active Rhode Island driver’s license, Allison was automatically granted a Georgia driver’s license to be used for ID purposes. No test required! HD patients are prescribed a lot of atypical antipsychotic drugs. Allison was no exception. We met the folks at CVS Pharmacy to set up the relationship that would keep her supply flowing. I made her first appointment at Emory and was told about the support group for HD patients and families that met on the last Saturday of each month.
I thought that our prayers had been answered when we discovered a doctor in nearby Macon who had written a book claiming that he knew how to cure HD. He was a licensed MD in good standing with the state of Georgia and had never been sanctioned. He was also on the faculty of a local college. How lucky could we be moving near this doctor who could fix the disease that was killing my daughter? I called and made an appointment. Midge picked up two copies of his book at the local Borders for the doc to sign. We couldn’t wait for the appointment day to come.
The first month of life in the south wasn’t bad at all. We hosted our first Easter dinner, dined out on occasion with Bob and Midge, and explored Middle Georgia. Rob and Fred came to visit and to celebrate my birthday. I started to prepare the house for a lifelong stay. I had new windows installed, replaced the roof with 40 year shingles, and had a screen room built over the pool. We added a hot tub to the back yard oasis.
In mid April 2005 we met with Dr. Greene, a neurologist at Emory. This appointment was not unlike the visits with Dr. Cha offering slight optimism without false hope. Dr. Greene saw no harm with keeping the appointment with the doctor in Macon. Dr. Greene also prescribed remeron for the recurrent headaches that Allison was suffering. Later that month we attended our first support group meeting at Emory. Midge came with us, stuffed into the tiny back seat of my Toyota Celica. I met a 90 year old lady who was the sole caretaker for her 60 yr old son with HD. My heart ached for her. The meeting featured a pot luck lunch which Allison enjoyed immensely. The following Monday I traded the Celica for a RAV 4 suv.
Late April brought about our appointment with Dr. M. in Macon. Midge again came with us and used her southern charm to secure his autograph on her books. It turns out that the doctor’s secret to fixing HD was to prescribe more atypical antipsychotics. Zyprexa was added to the mix. I fear that this might have tipped the scale in the wrong direction. Things started going rapidly downhill shortly thereafter.
Allison started to get very moody and had frequent outbursts. These outbursts became more and more frequent and increasingly intense. One night she spontaneously began wrecking the house, knocking over bookcases and tearing pictures off the walls. Unable to subdue her, I called 911 who sent a crew that carted her off to the local community hospital. After getting some tranquilizing drugs, she was sent home.
In May we had another appointment with Dr. M. in Macon. He added more zyprexa to the mix. Allison had always been pretty fit, not too skinny and not too fat. She started to gain weight and suffered from abnormal sleep patterns. Another destructive outburst and another call to 911 let to another run to the hospital. This time Allison was admitted for observation. We discussed possible strategies with the staff and after three days Allison was discharged.
I concluded that Allison needed more structure in her life. Surfing the internet and sleeping was not a good way to spend her days. Allison applied to volunteer at the local dog pound, but was not accepted due to her illness. Her PCP told us about a day program that the city offered for folks with mental health and dependency problems. Huntington’s is a physical illness with a mental health component and Allison was deemed worthy to be in the program. She was reluctant to go at first but did attend and kind of liked it. She spent five hours each day doing crafts, playing sports, talking, and eating.
Another meeting with Dr. M. led to more zyprexa. Allison was now taking a daily dose of 20 mg. She was now rapidly gaining weight and having a lot of trouble walking. She wasn’t getting any easier to be around and was constantly sniping at her grandmother. Bob started to stay away as he didn’t like conflict.
Another outburst led to another stay at the local hospital. After three days of observation and no new strategy Allison was discharged. When I picked her up at the hospital Allison wanted to go visit her grandparents. I drove over to their house which in retrospect wasn’t a good idea. Allison started yelling at Midge and then took some swings at her. For an 80 year old lady I have to say that Midge held her own. Bob asked us to leave and Allison exploded. She started banging her head on the driveway and could not be subdued. Bob called 911. Police cars, paddy wagons, and ambulances showed up in front of the house. In all, about nine uniformed personnel tried to subdue Allison. She put up quite a fight and at some point there was concern that one of the older officers might be having a heart attack. In the middle of it all, Bob came out of the house and ordered everyone off his driveway so that he could drive to the eye doctor. The action moved to the street. Bob did indeed drive off to his appointment as Allison continued to bang her head. Eventually she was subdued and transported back to the hospital.
During this stay, Allison was seen by Dr. K a young physician who had just been let go from the day program due to funding cuts. Allison liked Dr. K and Dr. K liked Allison. Since she did not have her own practice, she could not see Allison outside the hospital but she did give me her phone number and told me to call with any concerns. Dr. K was a nice lady, the program would miss her.
Again Allison was discharged with no new strategy. She continued to spend days at the program and made a couple of friends there. She asked if one new friend Brenda could come to the house for a swim. I said yes. Brenda came by, was nice enough, and remained a friend for the duration of our time in Georgia.
Dr. M kept increasing Allison’s zyprexa dose topping out at 40 mg. per day which I later learned was double the maximum recommended dose. Allison could no longer walk at all and was fitted with a wheelchair. A visit to Dr. Greene at Emory yielded the reason for Allison’s condition: the zyprexa was paralyzing her. It was way too early in the course of HD to need a wheelchair. Allison was weaned off zyprexa, Dr. M was terminated, and Allison started physical therapy. Slowly she regained the ability to walk and lost some of the extra weight.
The summer of 2005 brought better times. Allison and I took a drive down to St. Petersburg, Florida to watch the Red Sox play the Devil Rays. Fenway stayed home alone with a big bowl of food and Pawchy went to a doggy hotel. The trip was a good one except for the fact that the Red Sox lost two out of the three games. August was fairly calm with Allison spending her days at the center and staying fairly calm at night.
In September Rob and Fred came to visit again and we all went to Atlanta for a Sox game against the Braves and then back down to St. Pete for two more Sox games with the Rays. After they left, Allison went back to her old ways and landed in the hospital a couple of more times. We continued to go to the support meetings at Emory and had another visit with Dr. Greene. In November the support meetings were discontinued due to a lack of funding. Another resource was lost. We made it through our first holiday season in Georgia and spent Christmas with Bob and Midge at their house.
Winter 2006 brought more restlessness and resulting troubles. Allison had decided to start a business selling trinkets she no longer wanted on Ebay. At first her new business went well and I was forever ferrying her to the post office to send off her stuff. After she sold her ipod she decided to specialize in them. Allison decided to buy ipods and resell them at little or no profit. Because her prices were so low, business was brisk and her Ebay rating was good. Allison also saw an opportunity to make some quick cash. One day she came to me crying and told me that Ebay would not let her have the money in her bank account. Not being EBay savvy I wasn’t sure what to make of this. I learned quickly. We started getting calls from EBay security. It seems that Allison had sold about $25,000 worth of ipods that she couldn’t deliver. Customers wanted their money back. I managed to get all of them refunded but there was a shortfall of about $1500 which I paid. Allison was banned from Ebay and I took away her internet access.
I continued to drop Allison off at the day program each morning and pick her up each afternoon. One afternoon while I was waiting to pick her up I noticed a commotion in the parking lot. Allison was beating the lady doctor who oversaw the program. Allison referred to her as the witch doctor. I was not allowed near the scene. The authorities were called and Allison was taken to a state hospital in Milledgeville twenty miles to the north. I followed the rescue. Milledgeville State Hospital was an archaic institution which was stuck in the nineteenth century. It was not a nice place and I never felt so low in my life when I left Allison there that night. The next day Midge and I drove up to Milledgeville and could not find Allison in the room that she had been assigned. Allison had been moved to solitary confinement in the basement, aka the dungeon, for fighting with her roommate. We were told that we would have to take Allison home that day as she did not have a “mental illness” and was not qualified to be there. Home we went. The day program graciously allowed Allison to return.
Allison was not happy and became more unruly. She had already been hospitalized ten times during our year in Georgia. We tried counseling again which does not work with Huntington's patients. Because her thought process was so degraded by her illness, Allison was unable to benefit from the counseling. I was beside myself and for the first time in my life decided to get counseling for myself. Jerry, my counselor, tried to guide me through what was becoming an impossible situation. For the first time I began to question whether we should have moved to Georgia. Support for HD families in our area was not great. A distraught mother in a nearby town had recently shot and killed her two HD afflicted sons because she could no longer cope. We looked at assisted living and nursing homes for Allison. The homes in Georgia that were willing to accept her were not places where I wanted her to live. I started researching institutions around the country who have successfully housed HD patients. I started talking with Jimmy Pollard an amazing man who had started two HD programs at nursing homes in Massachusetts. Jimmy was very well versed in HD caregiving and gave me guidance.
Jimmy steered me to a nursing home that accepted HD patients in Massachusetts. I spoke with Sally, who ran the program. She sent me information and pictures and I was impressed with what I saw. In April Allison and I flew up north to visit the nursing home. Sally and her staff were kind and dedicated people and I was impressed. We returned back to Georgia to do some soul searching and make some decisions. I knew that I could not send Allison a thousand miles away to live by herself and that I would also have to move. This would not be easy as I had done so much work on my house I would lose tens of thousands of dollars when I sold it. Still I had no choice. We had to leave. We applied to the state of Georgia for funding and were quickly denied. I filed an appeal and again was quickly denied. I was told that I could start legal proceedings, but there was no time for that. New York state sends their Huntington’s patients to this home. We had to move to New York.
I put the house on the market and by mid May 2006 had received a deposit. Although I would lose about $40,000, the house was going to be sold. I left Allison with her grandparents and flew north to search for a new home in New York as close to the nursing home that I could find. Fred picked me up in Hartford, Connecticut and we started touring houses in upstate New York. I had two days to find my next forever home. I settled on a home in Stephentown, a sleepy farming community about ten miles from the home. One special feature of this house was the cows grazing in the surrounding fields. I returned to Georgia to settle my affairs there.
In late May, Fenway stopped eating just a day after having his yearly check up at the vet. I called the vet, who would not see him again, saying that there could not be anything wrong with him. He died the next day at another vet. I was devastated. I could not get out of Georgia fast enough.
Allison was excited about moving again and was behaving well. The buyer backed out the day before the closing, and our move became dubious. The realtor found another buyer and fast-tracked the closing. Fred represented me at the closing in New York, and by early July we were ready to head back up north. We planned a farewell pool party, inviting Allison’s friend Brenda and the grandparents. The party didn’t take place as Allison needed one last hospital stay. Fred and Rob came down to help. We rented a U-Haul, packed it up, and had a last dinner with Bob and Midge at Cheddars. That day, we received a letter informing us that the day program was closing due to a lack of funding.