Chapter Fourteen: A Cold Winter

The winter of 2014 started out brutally cold. Taking Allison out to get her medications in ten below zero temperatures was not good for her. I asked her nurse, who we had developed a good relationship with, about getting an aide.   This time one was provided. She was scheduled to come three days a week for three hours a day. I had my doubts how long she would last as she lived over sixty miles from us. She quit after three days. In mid January Allison landed in the hospital again for three days, possibly the result of our cold weather trips to the pharmacy.

Allison was coughing continuously and could no longer tolerate her tube feedings. She was again throwing up a lot. The VNA sent a nutritionist to our house who ordered a feeding tube pump with the hope that it might better regulate her formula flow. The pump did the trick. I was better able to control the flow rate which helped her problems a lot.  I was very grateful.

In February another aide was sent to assist Allison. This aide worked four days before disappearing to Long Island never to be seen again. It was probably for the best as she paid very little attention to Allison. The aide spent most of her time on her laptop running her EBay business.

Gail, Rob, and Dee continued to come weekly. We appreciated their visits but their purpose was evaluation and therapy and we really needed an aide. I still had to bring Allison out in the cold and snow to conduct life’s business. Since a wheelchair and snow are not particularly compatible, I had to walk Allison to the car, a task that she actually did fairly well. Most people in their fourteenth year of Huntington’s do not walk at all. We both refused to give up and our stubbornness kept us both going. Allison still passed her time watching her DVD’s and, of course, playing Virtual Families on her computer.

In March I received a letter from the Department of Health. After six months their investigation was complete. They concluded that June was innocent of any wrongdoing with the simple explanation that a nurse is obligated to contact Adult Protective Services if she feels there is any wrongdoing. I sent the letter back to them with the notation “Yes I agree, but a nurse is not obligated to fabricate wrongdoing when her feelings are hurt.” The VNA president had been correct, the health department would not rule against them. I was glad for the closure, but the whole experience still haunted me.

Winter turned into spring with renewed hope for easier times to come. Allison again started using the hot tub which emerged from under the melting snow. It was Miata time again and we discovered that there was a Dairy Queen twenty miles to our south. Allison still enjoyed soft ice cream and Dairy Queen was a perfect destination for a ride in a convertible.

In May we visited Albany Gastroenterologists where their physician’s assistant Phil made a routine change of her feeding tube. Unlike the previous year, this procedure took ten minutes.  Also in May, a new aide came to our house. This young lady was pleasant and efficient but unfortunately after the first week she was gone. She had injured her back caring for another patient and went on extended medical leave.

In June, the county nurse Deb told us about an aide program called Consumer Direct.  This program allowed the family to hire an aide with the county managing their employment. As luck would have it, a local lady who was experienced in caregiving was looking for a new client. She came to the house to meet us and we felt that she would be a good match for Allison. She seemed very eager to become Allison’s aide. She had already  worked for the program which would make things easy. Deb arranged for us all to meet at my house on a Thursday afternoon to complete the paperwork. The lady never showed up and never called. Allison and I were devastated.