Posted on

Our Lives After Kate’s Diagnosis

Part 5: Major Changes

Apart from the changes in our lives that I mentioned in my previous post, there have been two other changes that have had a greater impact on us. They both involved COVID. Before it came onto the scene around March 2020, our lives were already shrinking, but we had no idea how the Pandemic would affect our lives.

Prior to Pandemic, we spent an hour or hour and a half every morning at Panera and about the same amount of time at the café at Barnes and Noble every afternoon. Coupled with eating out for lunch and dinner, we were away from home a large part of every day.

COVID brought that to a halt. Suddenly, we were trapped in our home without the social contact we had enjoyed for so long, but that wasn’t all the damage COVID left for us. The biggest hit occurred when Kate and I had COVID almost eight months later when it seemed safer to get out. My case was mild and ended quickly, but she was hospitalized for eight days. That changed her life forever. It wasn’t COVID alone that hurt us. The whole experience was traumatizing for her.

She was frightened by the ambulance attendants who were naturally strangers to her. As they took her out the front door to the ambulance, she was screaming, “Help me! Help me! Somebody help me!. To her, it must have seemed as though she were being kidnapped. I was the only one she knew, but the hospital did not allow visitors at the time.

She was without me for eight days. She didn’t know anything about COVID or that she was sick. All she knew was that strangers had taken her out of comfort zone, and in the hospital they were doing things she didn’t understand and didn’t like. The impact on her was so great that she didn’t want to be touched when she got home, and we had to do the same kind of things they had done in the hospital to take care of her daily needs.

Before COVID and her hospitalization, Kate was beginning to lose her mobility and was in the early stage of aphasia. COVID made them a permanent part of her life. For five months, we began to adapt to a new world in our home. Then we moved to Still Hopes Episcopal Retirement Community where we live today. We have established a new routine that is significantly more restricted than before, but we are living joyfully despite the combination of Alzheimer’s, COVID, and a stroke Kate experienced a year after our move.

Posted on

What Kate and I Did After Her Diagnosis: Part 4. Everything Changes

I’m not a Buddhist, but I know that one of the fundamental tenets is the “impermanence” of everything. Nothing stays the same. All of us experience that, but “Living with Alzheimer’s” has given me a greater appreciation of impermanence than I had before.

During the first nine years of our journey, we were able to live happily, but we couldn’t prevent the kind of changes that Alzheimer’s brings with it. Each one has made our world a little smaller than when we began.

In addition to the activities we enjoyed together, Kate had her own activities that were important to her. They included use of her computer, driving her car, tending to her plants around our yard, activities with her P.E.O. chapter, as well as weekly lunches and shopping excursions with her dear friend Arletta Raley. She lost all of these things during the first eight years after her diagnosis.

We also lost several things that had been important to both of us. One of those was movies. With the progression of her Alzheimer’s, she became less able to follow movies. The last two we saw were close together in 2018, seven years after the diagnosis. That same year, we dropped weekly performances of the “Live in HD at the Met” operas in one of our local movie theaters.

Travel also became more difficult. Our last international trip was in 2015. In 2018, we made our last trips to visit our children.

The worst was yet to come; however, I will save that until next time.

Posted on

What We Did After Kate’s Diagnosis: Part 3, Travel

Travel had been an important part of our lives from the early years of our marriage. When our children were 4 and 2, we took them to Spain and France for six weeks. Three years later, we took them with us to Colombia, South America for the summer. While there, we took trips to Ecuador and Venezuela. When we became empty nesters, we began to travel more, mostly in Europe.

One of the first things we thought we were likely to lose was our ability to travel. In particular, we had wanted to visit Africa, Machu Picchu, the Galápagos Islands, New Zealand, and Switzerland. We were successful in getting to all of them. We engaged in a number of activities we had wanted to experience. We took a safari in Tanzania, took a balloon ride over the Serengeti, paraglided off a mountain slope in Switzerland and somersaulted on the way to the ground.

Travel was becoming more difficult for Sarah, so Switzerland was our last international trip. Two years later, we took our last trip to Chautauqua, NY, our favorite summer getaway.

In 2018, we took our last trips to visit our children and grandchildren. Since then, they have traveled to see us, but we were able to do international travel for four years after her diagnosis and travel in the US for an additional three years.