Chapter Twenty-Five: Allison's Final Month

On the last Sunday in January, I was awakened to Allison screaming and yet unresponsive. I tried for a half an hour to bring her around, but could not do so. A call to 911 brought out Chief Rik and his crew. They transported her to Albany Med where Allison would spend the next eleven days. I wish I could say that I was happy with her care there, but I was not. The doctors did not seem to really care about an end stage HD patient. Most of the nurses were nice.

I told my son Rob that he should come up. He came for the weekend and we both knew that this might be his final goodbye. We were told that hospice care was finally approved for Allison upon her return home, by their Medical Director at the insistence of Dr. Costello. I gained more respect for Dr. Costello during this visit. Despite his hectic schedule, he visited Allison several times during her stay. Her neurologist never did visit her despite being based at Albany Med.

Allison came home by cabulance on Thursday February 8th in a blinding blizzard. I cried endlessly as she was being carried into the house on a stretcher.  Ann tried to console me. Two hours later a team from hospice arrived: an intake nurse, a social worker, and a man who identified himself as “the director of homecare nursing.”  The first two folks were mostly silent. The “director” was callous and rude. In front of Allison he asked me “how do you know she is about to die?” He stated that she was NOT approved by Hospice and that he would make the decision.  He said that we could not have her wheelchair fixed, a task that was delayed by her hospitalization.

When I had heard enough from him, I decided to go it alone and asked Hospice to leave. Unfortunately Community Hospice was now headed by the same lady who was the president of the VNA, and had told me back in 2013 that we would never again receive services. After I wrote a letter to complain, she called to tell me that this man was not a director and had been sent to sensitivity training because of his conduct that day. The two other folks had corroborated my story. Unfortunately this did not undo what he had done. I know that he had been sent to our house to “get rid of us.”

On Friday, a lady who was supposed to act as an additional aide came to the house to meet us. She later called back and said that she did not want the job. I was left alone to fend for myself that weekend, as Ann could not work on weekends. The weekend was quiet and Allison was very peaceful.

The physical therapist came on Tuesday and said that he would return the following week. Ann and I tried to keep Allison engaged and contented. She kept slipping in and out of cognition. On Thursday, she played Virtual Families for what would turn out to be her last time. On Friday, Allison’s hairdresser Deb came to cut her hair. Allison barely stayed awake for her haircut. I noticed Deb’s tears as she left. I mentioned to Ann that I lamented that I hadn‘t made plans for Allison’s funeral and burial. When Ann left that afternoon I said “see you on Monday.”

On Saturday, another lady came to be interviewed as a potential aide. She seemed nice and was experienced in the caregiving field. We agreed to meet again on Monday.

Sunday was a quiet day. Allison watched her DVDs and at 4:00 p.m. I bathed her. She was not breathing well Sunday night as I sat by her side holding her hand and stroking her face. By 3:00 a.m. she was gone. Ann was the first person that I called. She said she’d come right down. I then called 911. Chief Rik and his crew arrived. Rik asked everybody to stay outside. He was crying. Ann arrived and we all cried together. I looked at Ann and said “I told you I would see it through to the end.” She looked back at me and said “And you did.”