By: Betsey
In the Beginning
She was 59, I was 29. Alzheimer’s. The word blew me away. She was so young. She didn’t even have gray hair. I knew nothing about Alzheimer’s disease, but I thought the disease happened to people much older than my mom.
I remember the first emotion I felt was shock. I kept hoping it was a mistake. Maybe they misdiagnosed her and we could get medicine or a surgery early and beat whatever it was? But the truth was, it was in fact Alzheimer’s disease and it came for my mom early.
After the initial disbelief, a strong sense of guilt set in. The year before the diagnosis, I was living at home. I was preparing to get married and was living with my parents while I was starting a new job. I spent a lot of time with my mom during this period and I noticed small changes. I teased her for forgetting things. I got frustrated with her when she did something strange or forgot simple things. I had noticed her confusion while balancing the checkbook and the fact that she started to quit activities that she previously enjoyed. She seemed angry and defensive. She wasn’t comfortable driving beyond a certain point from home. I noticed all of these things, but I hadn’t even considered Alzheimer’s. I hadn’t thought that she needed help.
Guilt is the emotion that dominated initially. Forgiving myself took a long time and sometimes I still feel a sense of remorse when I look back on that time. I should have done more. I should have been more compassionate. But at some point, you have no choice but to forgive yourself, because to go on this journey, your loved one needs everything you have going forward. You have to be strong and ready to go on this ride with them. I had to put my guilt and fear aside and accept this previously unknown disease as a part of my mom’s life and as a part of my life.
In the End
As we start this blog to tell our story and to open our lives to others on this journey, we are 9 years past the diagnosis. We are in the end stages of Alzheimer’s disease. My mom continues to battle courageously and we all continue to do our best to adapt along with this rapidly changing disease.
Since the diagnosis, my sisters and I have changed careers, married, had babies, and learned more about caregiving and illness than we planned. We have watched the subtle changes and weathered the dramatic. We have watched our mom forget basic skills and ultimately forget our names. But, every day we continue to live our lives while trying to honor and respect hers.
Although I know we are here near the end, what we dreaded from the day the word Alzheimer’s entered our world, in some ways the beginning still feels like yesterday. Sometimes I can still feel the initial guilt and sense of disbelief. Looking back, I’m glad I didn’t know all of the things that would happen on this journey. Maybe we all wouldn’t have been as brave.
If you are just learning of an Alzheimer’s disease diagnosis in your life and even if right now you aren’t feeling brave enough to handle this journey, let a little courage in at the beginning and it will grow along with you along the way.