Chapter Seven: More Dark Clouds

The party was over, Midge was back in Georgia and Allison started her second full year at the home. She was playing her video game Virtual Families a lot and hopefully staying off the internet. I didn’t get any bad calls or reports which was a relief. In September Allison and I travelled to Springfield, Massachusetts to attend the Eastern States Exposition, a New England regional fair that my father took me to each year when I was a child. Allison especially liked their large cream puffs which became a yearly tradition until she could no longer eat them.

In October 2007 I received a disturbing letter from my mother. In it she thanked me for inviting her to Allison’s party. She also wrote that she was embarrassed by Allison and would no longer see or contact her. She would also not be seeing me or Rob, who she said looked too much like me. She wrote that she would not be leaving anything to us in her will, but did enclose a one dollar bill in the letter. We have never spoken again.

In mid October Pawchy lost interest in eating and developed a bad cough. I took him to his vet right away and they gave him some respiratory medication and told me to monitor him closely. Over the next couple of weeks, Pawchy’s cough got worse and he started to get very weak. His vet suggested that I take him to Tufts University Veterinary Hospital in Grafton, Massachusetts  a drive of about two hours. Allison went with me and when we said goodbye to Pawchy I knew it would be for the last time. He died from pneumonia at 2:00 am the next morning. He was 12 years old. Allison took it fairly well. Pawchy’s and Fenway’s ashes sit in nice wooden urns at home on a bookshelf.

Two days after Thanksgiving I went to visit Allison as I did every Saturday. From Allison’s demeanor and the vibes given by  the staff I sensed that something was not right. It took a bit of detective work on my part but I was able to sort out the situation.  Allison had put an ad on Craig’s List looking for companionship which was answered by a man twenty years older than her from Hartford, Connecticut. I found out his identity from Allison’s caller ID. He had her called on Friday afternoon. Further probing revealed that this man had a criminal record.

He had come to her room the previous evening and spent several hours there. No staff member asked why he was there nor did they attempt to determine if he was a threat to Allison. I was furious! No normal person answers a personal ad on Craig’s List and follows through on the visit when he discovers that he is at a nursing home.

I went to the police and reported the incident. They interrogated Allison and the staff and asked the man to come in for an interview. The man told them that he only stayed for a few minutes. According to staff members this was not true. Nobody could prove that a crime had occurred, and no charges were brought.

I had never been angrier with Allison in my life although I did have to remember that Huntington’s skewed her ability to make good decisions.  I was also furious with the staff. Their defense was that Allison was a competent adult who could determine who visits her. My retort to them was that they profess to be a secure facility that protects its residents. Allison has a neurodegenerative disease and needed to be protected. I am the only person who visits Allison and, given her past history, they should have questioned this person. The man had not registered as a guest as all visitors are supposed to do and nobody cared.  In the midst of this turmoil, Allison made a trip to a trip to Berkshire Medical Center where she spent three days in their psych ward.

I took away Allison’s internet access for good this time. I also took steps so that I would have complete legal authority over Allison and all her affairs. I gave the staff a list of allowable visitors with instructions that anyone not on this list would have to be okayed by me. My legal authority over Allison was now so airtight that she could barely breathe without my permission. Huntington's patients suffer from executive function disorder and Allison could no longer make good decisions. It took weeks, if not months for me to get over what had transpired. Christmas was not a happy time this year.

In January 2008, we received a letter from Dr. Higgins informing us that he was leaving Albany Med. He was moving to the VA hospital and would no longer be seeing private patients. His patients had the choice of continuing at Albany Med with a yet unknown doctor or finding a new physician elsewhere.   Allison had one last appointment with him and we discussed the possibility of moving her Huntington’s care back to Mass General.

I called Mass General to make an appointment for Allison. We were given an  appointment with Dr. Cha in May.