Chapter Eleven: Last Days at the Home

In late November 2011, I received a call from the nursing home to inform me that Dr. Rosas had asked them to test Allison for a UTI again. They were legally obligated to inform me of this request. When a couple of weeks had passed and I had not heard the result, I asked the head nurse on her unit what the result of the test was. His answer to me was “It wasn’t necessary. We didn’t do it. You and your Dr. Rosas always think she has a UTI.”

I was furious. A urinary tract infection left untreated in an HD patient can be fatal. HD patients usually succumb to infections or aspiration. I complained to the administrator, and the test was done that day. Allison had a massive infection. The ensuing months were precarious. Allison started to lose weight rapidly. She was lethargic and disinterested in life. She didn’t get out of bed. She didn’t eat. She didn’t even play Virtual Families. In February 2012, I asked that she be moved upstairs to the HD unit, as she was the last holdout still living downstairs. I thought she might get better care upstairs. Allison did not rebound, and by March I was getting daily calls to come to the home because she would still not get out of bed or eat.

Allison did get up for me and I did get her to eat. Perhaps nobody had made much of an effort. Her food was simply being left on her tray table with no attempt to feed her. Allison was too weak to eat on her own and needed to be fed. She had lost about fifty pounds. I decided to take her home to live with me. She had come to the nursing home because of behavioral problems that I could not control. Her problems were now physical. I could deal with that.

I informed Sally that I was taking Allison home to live with me in April. I don’t think that she initially believed me. Very few late stage Huntington’s patients live at home. I spent the next two weeks caring for her during the day and taking her possessions home at night. When her room was almost empty, I think Sally realized that I meant business. I arranged for the visiting nurses to help out at home. I settled her affairs at the home and protested when they told me that it would take ninety days to refund the money in her patient account. She did leave with a check. At discharge, a three month unused supply of xenazine was returned to us. Over time, three months of her doses had been skipped! I wheeled her out for the final time on a Friday morning. Five years and eight months were enough. It was time for Allison to come home.

Looking back, I realize that the nursing home was not a bad place. They were there for us when we needed them. Allison was usually well cared for and happy. Their HD people were extremely dedicated. Allison’s bad experiences were due to just a few people and bad management. To my knowledge, none of them still work there. The mission of their HD program was honorable.

On Saturday morning Allison woke up in her own bed, which we had purchased in Georgia. The visiting nurses would be coming on Monday to assess her needs. First, there was some unfinished business to tend to. Rob had given us a private aerial tour of the Berkshires for Christmas. Bad weather had postponed it several times. This morning was again rainy but offered some hope for clearing. I called Lyon Aviation at the Pittsfield Airport to see if we should come over. They said “let’s give it a try.” As we approached the airport, the clouds started to dissipate, and the sun started to shine. The airline owner gave us our flyover. I think that he was very touched by Allison. He took us on an extended flight and highlighted points of interest below.

On Monday,1 the folks arrived from the VNA. They suggested that we place a hospital bed in the living room for Allison. They decided that she should have weekly visits from a nurse. They also recommended that she have weekly sessions with speech, physical, and occupational therapists. An aide would be provided to help with Allison’s personal care. A medical social worker was offered to help deal with the bureaucratic red tape that comes with being a homebound  long term care  patient. Other possible modifications and additions to our home were discussed. It was a productive visit.

I bought baby monitors so that Allison would never be out of earshot. I bought linens for her soon to arrive hospital bed. We carved out a computer niche in the corner so that she could play Virtual Families.  Her personal items were placed in the downstairs bathroom.  The coat closet was converted to Allison’s clothes closet.  We visited Dr. Len Leonidas, who became Allison’s new primary care doctor.  Allison loved living with Clancy, Bosley, and Bronson full-time. Things were taking shape.

Allison was fidgety and tended to scratch herself. She left the nursing home with deep scratches all over her body. Skin creams helped heal some of them but I feared that others might be permanent. I came up with the idea of her wearing gloves to fix this problem. After trying several different types we settled on touchpad gloves. This problem was solved.

The physical therapist was the first to visit. She was a lady with two young children from a neighboring town. Allison loved her. She conducted mobility exercises with Allison and assessed the functionality of Allison’s old wheelchair from Georgia.  She arranged for a visit from a wheelchair expert to help assess Allison’s needs. Allison was fitted with a tilting highback chair more suitable for an HD patient.

The nurse was the second to visit. She was a no-nonsense former nun, but personable enough. I think she scared Allison a bit. She was a good nurse and very thorough.

Next came the speech therapist. Gail was a pleasant lady who had worked with Huntington’s patients in the past. She shared her ideas and made us aware of adaptive equipment that might be helpful.

The occupational therapist had a very aggressive personality. She had some very bold ideas and decided to expand Allison’s computer use beyond playing Virtual families. I quickly nixed the idea of Allison getting back on the internet.

The social worker helped us find our way through the myriad paperwork that had already began arriving in the mailbox. I quickly learned that Allison had something called a monthly spend-down that she had to meet with the county. He helped me deal with that.

Most importantly, Allison had a new aide. Dawn was a middle aged woman and was the perfect match for Allison. She had children not much younger than Allison and had survived the accompanying battles.  Initially she came for a few hours three times a week.

Allison and I were happy with all the folks who were assigned to her. I was also happy with the VNA’s commitment to Allison. They even sent the OT and the nurse to Vermont for a seminar to learn more about Huntington’s.

Life was again good for Allison. The hospital bed came and we covered it with a pink comforter and Allison’s stuffed cows. Her corner of the living room became her personal area. Pictures and baseball memorabilia soon populated her area. Her guppies swam in a nearby tank. Her hamster had long ago departed this world.

Allison’s wheelchair arrived. It was a fancy unit with more options than a new car. It provided much more comfort than the old one and was perfect for sitting and playing her computer game. The expert came out again to make adjustments to make sure that it was perfect for Allison.

Allison continued to struggle with eating but slowly gained back some of the weight that she had lost.  She was coughing and throwing up with increasing frequency. A suction machine was ordered. She was scheduled for an endoscopy to assess her swallowing.

We continued to see Dr. Rosas for the clinical trial and regular appointments. Allison was now stable and no changes were needed. We discussed her swallowing problems and future options. We were saddened that the trial would soon be ending. We were elated when told that it had been extended to a fourth year.

Allison’s speech continued to slow and understanding her became more difficult.  Dr. Rosas made an appointment for Allison in Braintree, Massachusetts to assess her communication needs. Allison received a Dynavox speaking machine with which she would be able to store words and phrases for when she could not talk. Gail, the speech therapist, worked with Allison on this task.

The summer of 2012 was moving into upstate New York and it was time to have some fun. Allison and I cruised around in the Miata finding new areas to explore. We went up to Lake George and went for a boat cruise. We ate at the Lake George A&W and when it came time to pay the tab, the waitress said that we didn’t owe anything.  She said that the couple who had been sitting at the next booth had taken care of it. I looked at the booth and it was empty. I had been jaded by strangers always staring at Allison and was heartened that there were still some good people left in this world.

We took a ride out to Cooperstown with Rob and visited the Baseball Hall of Fame. While in a souvenir shop looking for some momentos to take home, we saw Pete Rose selling his autograph in the corner. We ate at a buffet restaurant and drove home.

We discovered the Tri-City ValleyCats, a minor league baseball team based in Troy. We went to many of their games. They became a good replacement for the Colonials, who had left Pittsfield.

In July Bob and Midge drove up from Georgia for their annual visit. This one was not the best. At their hotel Midge complained of chest pains, and Bob called 911. She was transported to Berkshire Medical Center, where was admitted. Allison and I went to visit each day and went out to eat with Bob. The doctors kept her for six days out of an abundance of caution, but a myocardial infarction was never diagnosed. She was released on a Saturday and we went to Jimmy D’s to eat that night. The next day they went home. Midge was now 88, and surely this would be her last trip to New York.

Allison spent a lot of time in the hot tub and was pleased when we found a salon in New Lebanon that offered massages as well as hair styling. She was warmly welcomed by the proprietor, Deb, who took a liking to her right away. Deb’s salon became a favorite destination for Allison.

Allison noticed the little country church at the end of our road and decided that she wanted to attend on Sundays. We went a few times and sat in the back pew so that her restlessness would not be a distraction to the other worshipers. People were friendly and kind as we introduced ourselves and explained Allison’s affliction to them. On the third Sunday a lady came up to us and said “I want to introduce you to my friend. She was a special education teacher and will understand you.” Allison didn’t want to go back again.

August brought Allison’s 30’th birthday. We made a return trip to Lake George with Rob and went on the same boat cruise.  We ate at the same A&W. This time we had to pay. On the way home we stopped at the Ice Cream Man and purchased an ice cream cake for later.

Allison’s first summer back living at home had been a good one. It ended with our annual trip to the fair in Springfield. I don’t remember if she ate a cream puff.