My grandmother was outside, in the winter, in Colorado, looking for her parents who she thought were going to pick her up from her assisted living home. She was outside for about thirty minutes before someone found her and brought her back to her room. My mom received a phone call from my aunt who described the situation to her. Gram needed a more intense level of care; she could not stay where she was, and at this point, it was not safe for her to do so. My grandmother had been displaying symptoms of dementia for years and had progressed to Alzheimer’s disease within the last few years of her life.
Needless to say, her parents (my great-grandparents) were not going to pick her up from her assisted living facility. This episode was certainly one of the most severe regarding my grandmother’s cognitive decline, but there were many others toward the end of her life. Wandering out of her assisted living facility, getting lost in town, wearing clothing inappropriate for the season (she had left her home in a winter jacket in the middle of July), and repeatedly asking the same question over and over, were all common occurrences that my entire family became familiar with.
Before her cognitive decline, my grandmother was an avid reader who had multiple subscriptions to newspapers. The local or national news was always on in her living room.
She was incredibly informed and could hold a conversation with anyone regarding the goings on in the world. Not only that, but she also traveled to Egypt, Ireland, Croatia, and Great Britain within the last 20 years of her life. She was over 70 when she embarked on these travels!
This was also the woman who got up early and made blueberry muffins and bacon for my cousins and me, had tea parties with my sister, bought us subscriptions to magazines for our birthdays to encourage us to read, and who always brought my sister and me to museums to foster curiosity and learning. There was an exhibit at The Holyoke Children’s Museum where the children went through a long, pitch-black tunnel on their hands and knees. The goal of the exhibit was to get the children to use their senses to find their way through the tunnel. At age 9, I was too scared to go in, so my grandmother got on her hands and knees and went through the tunnel with me and showed me that there was nothing to fear. She was 71 years old when she did this. This experience showed me that it is ok to be scared and that there’s always someone who will help me get through the fear.
As you can probably see, Alzheimer’s Disease monumentally impacted my family. There was my Gram before Alzheimer’s Disease and my Gram after Alzheimer’s Disease. She was the same person, but it was two completely different people. My grandmother went from a woman of extreme independence to a woman that could not be home alone anymore. It was awful to watch her decline. There was nothing that any of us could do to prevent it from happening. Physicians had limited methodologies which would slow the decline, but the decline into Alzheimer’s Disease was inevitably going to happen.
I remember going with my grandmother and mother to a few of my grandmother’s appointments. Seeing how the physicians interacted with her calmly and patiently while assuaging the fears of our family was part of the reason why I decided to go back to school. I got my degree in psychology in 2013, was out of school for over eight years, and then reentered college about two years ago. I decided to start taking some of the premed coursework at the local community college. In Fall 2023, I will matriculate into a premedical postbaccalaureate program at Elms College where I will complete the premed coursework with the hopes of entering medical school in about three years. The dream of being a physician stemmed from seeing how physicians assisted my family over the years. I want to become the calm, competent, patient, presence that they were for our family.
My family decided that it was best to move Gram from Western Massachusetts to Colorado. It was a gigantic move, but she could live in an assisted living facility and be closer to our family in Colorado. This was when dementia progressed into Alzheimer’s Disease. There was pain, sadness, grief, and anger at my grandmother’s condition. I remember feeling so helpless, there was nothing that I could do to fix this progression.
Although the impact on our family was horrific at times, we learned to appreciate the time we had together. One of my grandmother’s family-famous sayings is “Glad to be together”. She would quip this at family dinners while all our cousins, aunts, and uncles were together in Vermont. This saying became so alive during the last few years of her life. There was tremendous difficulty in seeing her deteriorate, but we became so glad for the time we had together. We learned to appreciate the times when she would remember our names, when she got a good report from the doctor, when she smiled when she saw us coming. These were the pearls of joy hidden in the haze that was my Gram’s Alzheimer’s Disease.
I learned the importance of listening to her tell the same story or ask the same question four or five times in a row. She was so glad to be heard and listened to, it helped her to feel included and not ostracized. Most importantly, I learned the importance of telling her how much I loved her. I would tell her that I loved her just as much as she asked me the same question over and over.
Unfortunately, my Gram passed three years ago on Earth Day from COVID-19. We were not able to see her before her death. My aunt and cousin were able to stand outside her window at her assisted living home and play some of her favorite songs the day before she passed. She remembered these songs. Her passing was horrifically sad, but it was time. I will remember my Gram as the woman who traveled, baked muffins for her grandchildren, waved at every car that passed her house, and who went into scary children’s exhibits with her anxiety-ridden grandson. Every time my aunts, uncles, and cousins are all together we never forget to say “Glad to be together” before dinner, and we know that the spirit of Gram is alive in each of us.