Chapter Thireen: The Invasion

Allison majored in sociology and has always had a keen interest in humankind. In late August 2013 assisted suicide was a hot topic in neighboring Vermont. The Vermont legislature was debating whether to legalize it for some terminally ill people. Allison was following the debate on the news and said  to her nurse “I can understand why some people might want to do this.” In no way did she personalize her statement and her musings should have stayed private. Instead, the nurse decided to report Allison’s comments to her superior.

About an hour after the nurse left that Thursday afternoon, I received a call from a nasty lady at the VNA. She said “I understand that your daughter is talking about assisted suicide.” I tried to explain the context of the conversation, but this lady would not listen. She told me a man should not be taking care of a sick woman, and that Allison belonged in a nursing home. I explained that Allison was my daughter, and that we had already tried the nursing home route. She opined that there were many wonderful nursing homes that take HD patients. I retorted that Allison was not going to a nursing home.  Her last words to me were “this is not going to end well.” My last words to her were “Huntington’s never does.” I then hung up. She called back immediately, but I did not answer.  She had upset me so much  that I did not wish to continue this debate.

A short while later, Allison’s nurse Beth called me. She was very upset. She said that she was “sorry that she had said anything.” She told me that June, a nurse manager, wanted to come out and inspect my house on Monday morning. I told her that there was no need for June to “inspect my house.” My house was very neat. Allison was well cared for and very clean (certainly much cleaner than she was in the nursing home). Everybody who interacted with us was impressed with Allison’s care. Nobody had ever questioned my ability to care for her. Allison’s grandparents would be arriving on Sunday night, and we did not need the distraction of June coming on Monday morning.

Bob and Midge did arrive on Sunday night and Nurse Beth accompanied by June did come on Monday morning despite my pleas not to. I told June that we had company and that it was not a good time for her to be here. Beth told June that they should leave but still June tried to come into the house. Allison’s aide went outside and told June that everything was fine and to please leave. Bob and Midge sat in my living room wondering what the commotion was all about.

Beth finally did convince June to leave. After the aide left for the day Bob, Midge, Allison, and I left to visit an auto museum in Bennington that Bob was anxious to see. We had a nice day, and I didn’t  give any more thought to that morning’s unpleasantries.

Bob and Midge arrived at my house bright and early on Tuesday morning. Allison’s aide never showed up. This was quite unusual, as she had never missed a day. About 9 o’clock there was a loud knock at my door and before I could answer it two young ladies accompanied by two armed New York state troopers came in. One of the ladies ran over to Allison and, pointing at me, asked her “are you afraid of him?” Allison answered “no, he’s my best friend.” I thought Midge was going to have a heart attack.

Within minutes one of the troopers apologized and said that this had been a mistake. June had been so incensed at being sent away the previous day that she had called adult protective services and reported that Allison was abused and in danger. This team had actually come out on Monday afternoon while we were in Vermont.  June had told them that I owned a gun, which I did not.  She had also told them that I was unstable because I owned a horse and a pig. I took them out to the barn to see the offending beasts. One of the APS ladies said that they were cute. They asked if we had talked about assisted suicide. When I explained the context of Allison’s conversation with the nurse, they fully understood. I asked what recourse I had about this incident and they gave me the phone number of a state agency where I could file a complaint. Within fifteen minutes they were gone.

The next day Terry showed up as usual. She told me that she had been called into the VNA headquarters on Monday afternoon and grilled about me. When she told them that I was a good father and took excellent care of Allison they told her to come up with anything negative that she could about me. She told them that she couldn’t. Terry said she was afraid for her job at that point. They had also told her that I would be receiving visitors on Tuesday morning and not to go to my house. I told Terry that I didn’t know if I could continue to use this VNA considering what they had done to us. She told me that she would switch agencies if I decided to. I told her that I couldn’t ask her to do that as she had just started receiving health benefits that she so badly needed. Bob and Midge were so upset by the incident that they went home. Eighty nine year old folks didn’t need to go through an experience like this!

I spent Wednesday and Thursday going toe to toe with the VNA’s president on the telephone. She apologized and said that there was no evidence that Allison was in any danger at my home but said that June was a longtime employee and would not be sanctioned. I told her that I would be filing a complaint with the Department of Health. She told me that was my right but that she knew everybody there and that they would not find against the VNA. I filed the complaint and the investigator was initially quite sympathetic. I pondered what the future held with us being in June’s crosshairs. On Thursday the VNA president told me that she had arranged for a rival VNA to take over Allison’s care. Terry did not show up on Friday.

When a week had passed without hearing from the new VNA I called them and was told that they did not have any openings at that time. I was beside myself. We had done nothing wrong and now Allison didn’t have anybody coming to help her. I started a phone and letter campaign and Senator Kirsten Gillibrand’s office responded and offered to help. I also started conversing with the CEO of the original VNA who was at first sympathetic. She offered to look into our dilemma but in the end said that the matter was one for their lawyers.

We eventually heard back from the “new” VNA. In mid October their representative came to our house to evaluate Allison. She told me that they did not have a nurse available to visit Allison, but that she could send out a physical therapist who would direct Allison’s care. She also promised a speech therapist.  She told me that Allison was not sick enough to warrant an aide and that I would be committing Medicare fraud if she had one. I called the county social services office to dispute this.

We were thrilled when Gail, Allison’s previous speech therapist, came to the house the next week. It seemed that Gail worked for both agencies. Allison cried tears of joy.

Deb, the county homecare nurse, came to the house and determined that Allison did indeed qualify to have an aide. The VNA said that aides did not want to come out to Stephentown as they preferred to work in more populated areas where they could see more clients. The physical therapist was new to the home care industry and was unfamiliar with managing a case. She was also unfamiliar with Huntington’s Disease.

By late October Allison was due to see Dr. Rosas to wrap up the clinical trial. I was still too shell shocked and exhausted to make the trek to Boston. I asked if we could wait until November. She said that we could.

In November the VNA assigned a nurse to visit and manage Allison’s care. Dee was very personable and we both liked her very much. They also sent out a new physical therapist Rob, who was wonderful. Allison still had no aide.

I was still in no condition to make the trip to Boston and Dr. Rosas said that she would conclude Allison’s participation with the data that she already had. We received a Christmas card from Dr. Rosas and were grateful that there were no hard feelings. We made an appointment at Albany Med for Allison’s neurological care.

It was late fall in upstate New York and cold weather was starting to settle in. Without an aide it was hard to go out and get provisions. Allison had to go with me no matter how inclement the weather might be. We bought a lot from Amazon. I had not received an answer to my complaint with the health department. I called them and was told that the investigation was still ongoing. Capitol crimes are solved faster! Senator Gillibrand’s office checked in periodically to see how things were going.

The Christmas season was peaceful. Allison could still walk a bit with my help and we managed to still do some fun things. Of course Rob and Fred came to visit and Allison stayed busy playing Virtual Families.