Chapter Sixteen: Welcome Aboard, Yvette

A few days after the concert I received a call from Deb, the county nurse, informing us that she had a lady in Stephentown looking for caregiving work. At first I was skeptical. Allison had received exactly 33 aide hours in the past year, and I was not expecting anything to change. Deb gave me the lady’s phone number and I called her. We agreed to meet the next day at my house.

The next afternoon she showed up on time, something that I was not accustomed to. Her name was Yvette and appeared to be about 70. She and her husband Charlie had recently moved back to New York after a five year retirement stay in Florida. She had worked as a caregiver In Florida and was presently caring for an elderly gentleman in a neighboring town. Yvette was available for afternoons which was perfect as Allison usually slept late. She was not familiar with Huntington’s Disease but was curious and wanted to learn about it. Yvette did her homework and soon knew more about HD than a lot of the health care people we had dealt with.   We both agreed to give it a try and I called Deb to get things rolling.

By the second week of September Allison had a caregiver for 15 hours a week. Yvette only had to last four days  to surpass the longevity of any of the past three aides. I was impressed how quickly Yvette picked up on the intricacies of Huntington’s Disease. She quickly got to see firsthand the good, the bad, and the ugly of HD. She did not seem fazed at all.

When Yvette’s other client moved to a nursing home in December, her weekly hours with Allison increased to 20. She was forever bringing small gifts to Allison and invited us to a Christmas party at her home. I couldn't remember the last time that Allison and I got invited anywhere. We went to the party and Allison had a good time. By year’s end, Yvette had been with us for four months and seemed to really care about Allison beyond her job description. If Allison had a bad day, she would call me that night to see how she was. Nobody ever did that before. The only thing that could stifle Yvette’s passion was a snow storm. Unfortunately, the new year would bring many of them.

As 2015 rolled in, Allison was enjoying her life and still passing the time watching movies and playing Virtual Families. She had a new friend in Yvette, who could comfort her when she was down . We were still well served by Gail, Rob, and Dee. Allison’s speech had slowed to the point where she could often not get her point across. This caused her great frustration and she would often start crying when not understood. As their brain deteriorates, a lack of impulse control is a major problem for HD patients and I was forever trying new ideas to keep Allison calm. Allison could still walk into the bathroom and to the car with me holding her up, but I knew that new ideas, and the idle ramps, would soon be needed.

In February, Allison’s nurse, Dee, told us that she would soon be leaving. The VNA had expanded their service area and Dee found herself spread too thin. She felt that it was time to move on to something less demanding. Because no nurse was immediately available, we again found ourselves on our own at a time when nursing care would have really helped.

In late February, Allison had a bad night. She was having trouble breathing and pulled out her feeding tube. I called  911 and she was transported to the hospital in Albany. A new tube was inserted in the ER, and the doctor wanted to send her home. I asked that she be admitted, as she was still having breathing problems. They kept her for three days, but it was not a good stay. She was not fed, and became hungry and agitated. They tied her to her bed, which had never been done before. On the second day, we had a blizzard and I could not visit her. That night, they called and asked me what formula we used in her feeding tube. I had already answered that question in the ER. I went to see her on her third day and was told to take her home. A nurse had finally started her feedings by the time I got there, but her feeding tube did not look right. The nurse told me that she had to grow into it. I knew that wasn’t true, but I just wanted to get her out of there. With follow up visits scheduled with Dr. Leonidas and her neurologist, we headed home.

The next day, Allison’s feeding tube was not working properly. It was leaking and causing her pain. I called Berkshire Med and asked if she could be seen by the radiologist who had inserted her last tube. They told me to bring her in. Yvette came with us on the trip to Pittsfield. The radiologist fixed the tube, which indeed had not been properly installed.

One day, about a week later, Allison had some more difficulty breathing. Yvette and I were concerned and debated whether to take her to the hospital. Allison did not want to go, but by nighttime was flailing on the floor in agony. Yvette called to check on Allison, and I told her of our plight. I called 911, which brought Chief Rick and his team, with Yvette right behind them. Yvette and I followed the ambulance to Berkshire Med. There, they determined that Allison had aspiration pneumonia, and she was admitted. Her mother had succumbed to aspiration pneumonia, and I was scared. We were with her in the ER until 4 am.

The next day Allison was unresponsive and not doing well. I called Fred and told him he had better come visit. Rob was in Florida watching the Red Sox in spring training. The doctor asked me if she was always like this and I told him no. He could not offer any assurances for a recovery. The next morning Allison seemed perhaps just a bit better. Fred arrived from Rhode Island and Allison’s recovery started. She was laughing and joking with him and I thought to myself that he must have thought I was being overly dramatic. That night on the way home from the hospital, I briefly stopped by at a birthday gathering for Yvette’s husband Charlie that Allison had been looking forward to. The next day Allison came home with orders that she could no longer eat or drink anything by mouth. This meant that Allison could no longer have the iced tea or Gatorade that she so enjoyed. She was saddened but was uplifted when Chief Rick stopped by again to see how she was doing. We kept the appointment with Dr.Leonidas but canceled the one with her neurologist. I called MGH and made an appointment with Dr. Rosas.