It started with stories. All repeated stories. Even before I could attach a problem to the stories it was there. It started so subtly. She would say “Have I told you this already?” and I would say yes but go ahead and tell me again. I just initially assumed she forgot she told me. I never in my mind went down the road of Alzheimer’s disease. Ever since I could remember, my mom had word recall problems. Meaning, she called us all by the wrong name, I was Ted, Jay, Gary and even Oscar the cat. If she couldn’t find a word she wanted to use, she called it a whatchamacallit. My dad would often fill in the blanks for her, it just seemed like second nature to them. So, it never really crossed my mind that she was developing one of the first signs of Alzheimer’s disease, memory loss.
Over about a two-year period I started to notice more re-telling and statements such as “Have I told you this before?”. She seemed more frazzled when she prepared family meals, in fact she forgot to make key dishes in the meal. I believe it was Christmas of 2010 when I asked to have a family meeting with my brothers and their wives. I wanted to see if they noticed anything. I was worried that I was the only one that saw something was “off” with mom. My brothers and their wives spoke up quickly and we all agreed mom was not herself. Each of us made some level of excuse for why this could be, but at the end of the meeting, it was decided that the topic had to be approached with mom. And it was decided that because I worked in healthcare and knew how to navigate the system, I was the perfect person for the job. (Yay me!)
My mother always took very good care of herself. She was proactive in her healthcare and took an extremely active role in preventative health. She saw her PCP regularly. There was a part of me that thought if something was wrong, her PCP would be on top it right? After Christmas, I went to visit my parents and asked if I could sit down with them and talk about a few things. Of course, they readily agreed. At this point in my professional career I had done so many family conferences, that this should have been a cake discussion. What I learned that day was something that I learned at every step of the way through the Alzheimer’s journey; this was different, this was personal. As I sat and faced my parents and tried to find the words to say I found myself struggling. But after coming out and saying we kids were worried about her memory, my mom said “thank GOD! I thought I was the only one. I thought I was going crazy”. She then told me about the times she forgot how to get home from church and how she can’t remember where she placed items, or the new grandkids names. She agreed that she needed to go through some testing to rule out other factors that could be causing memory loss.
After a visit to her PCP, mom was referred to a gerontologist that specialized in memory loss. We initially met with a team of providers. Mom went through both cognitive and medical evaluations. The idea was to rule out all other factors that affect the memory such as medications, mini strokes, neurological conditions or other medical causes. After all evaluations were complete, we were called back several weeks later to sit with the team and review the results. During the wait I kept telling myself that mom was having mini-strokes and that was why she was forgetting. I would not allow myself to go down any other road.
If you ask anyone who has had a cancer diagnosis if they remember the first time they were told they had cancer, they would all say they remember it with such clarity. I will never forget sitting in that room when the medical team said mom had Alzheimer’s disease. It was a punch in stomach. Because of the work that I do, I had seen the full-on effects of Alzheimer’s disease not only to the individual that it attacks, but also to the family and friends. I knew firsthand how this disease was going to go and it wasn’t going to go peacefully. Two days later, I found myself sitting on my kitchen floor sobbing like a baby. That was the last time I sobbed like that until years later when Alzheimer’s had taken complete control. I suddenly realized that Alzheimer’s disease was my new dance partner. I could either chose to join the dance or sit on the sidelines. I chose to dance.
What experiences have you had during the diagnosis phase of Alzheimer’s disease? How did your person take the news? What were your reactions when you heard those words?
Shes her mother's daughter 