April 1, 2020 - June 30, 2020
Not much would change in April, even after the revelations from March. Anne was continuing with physical therapy and rehabilitation, however we transitioned to in-home care exclusively. Partly because of COVID, but mostly because Anne was no longer interested. We were no longer hoping for a miracle.
April 6th was our 18th anniversary. I recalled how happy we were just the year before. We celebrated our 17th anniversary at the Hyatt Hill Country Resort. The boys came out for the day and we swam in the Lazy River. Anne rode the surfboard at the Wave Rider and she did fantastic. She looked awesome 🤩. That evening we talked about how lucky we were. We had great jobs, fantastic kids and a wonderful life together. Ironically we talked about what we would do if something happened to the other. We agreed that we would cherish each other’s memories but would try to be happy. Anne specifically wanted me to make sure we kept the cleaning service to help out. I’ll always remember our 17th anniversary, but this was our 18th and it was so different. “Would this be our last anniversary together?”, I thought to myself. I’m sure Anne had the same thoughts.
It was the middle of COVID. The boys were home from school and so was I. We didn’t know when we would return. Most everything was shut down. There wasn’t much of a mood for celebration, and it was a Monday. Our 18th anniversary was just another day 😢.
Throughout Anne’s recovery small things would happen that made me wonder if Anne was getting better. Like when she woke up in hospital after being unresponsive and a high fever for several days. Or when she finally could pee on her own when she first came home after using a catheter for months. On April 10th Anne got her first period since her stroke a year earlier. This surprised both of us. For me, I (briefly) wondered if this was a sign. Anne never considered it as anything positive. The most likely explanation was that her body was still recovering from the trauma of the stroke, but recovering is not the same as repairing.
Anne and I spoke very little about what was “next”. I hadn’t fully accepted that Anne would never get better or the possibility that she could find the desire to continue living. I researched many alternatives that might make life easier for Anne. I enlisted family members to help as well. There was a powered arm and hand brace to assist with long-term muscle weakness OR partial paralysis. Also looked at a handful of motorized standup wheelchairs. I scheduled a salesperson to visit for a demonstration. Anne tried out the chair and it worked as advertised to go from sitting to standing. The bigger problem was that the unit was so large, especially from front to back. It would never be able to navigate the house, from bedroom to kitchen, etc. without precise movements. This unit was so large, transporting it to and from work would not be feasible, therefore we would need one for home and one for work. However, the biggest obstacle was Anne moving and navigating the chair. There was a simple joystick that could be placed on the left or right side. Anne could not gently guide the joystick around. Given her condition her movements were jerky and exaggerated. These devices are truly amazing, but they weren’t a good fit for Anne. After the salesperson left, Anne reminded me about her final directive. The part about not being kept alive by machines. She made her point 🙁.
I started this journal last year (April 2024) and as I write each month, I go through many of the pictures, videos and postings from 2019 and 2020. There are several pictures and videos of Anne during her rehab. Revisiting these is the most difficult part of this journal. I see them in a completely different light five years later. I see how much Anne was struggling and fighting. How unhappy she was. She was so transformed after the stroke in so many ways. It is upsetting to watch them now.
At the end of the month Anne wanted to go to the Beach House so I planned the trip. Although we didn’t say it, we both knew this would likely be Anne’s last trip. The trip was uneventful. We relaxed and drank coffee in the morning and watched the sunrise and sunset. I will always have wonderful memories of us at the beach house.
https://myomo.com/what-is-a-myopro-orthosis/
https://www.karmanhealthcare.com/product/xo-505-standing-wheelchair/
Coming May, 2025