Alzheimer’s disease is a disease that scares people when you mention it. People see fear when they say they take care of their mother who lives with them.
She was diagnosed with young-onset Alzheimer’s disease at the age of 59. She was my best friend, my best friend and the biggest cheerleader. That day, in the doctor’s room, my world felt like it had collapsed.
We spoke openly about her diagnosis, what she wanted and what she didn’t want. Alzheimer’s disease is a heavy-duty word that has only negative implications, so I renamed it AliZee at home.
My brother and I are taking care of her now. Medical staff often comment on our positive approach to it, but I don’t know of any other way to approach trauma. After being paralyzed in an accident at the age of 14, my mother cared for me and helped rebuild my life, so I simply continued from her lead.
In some respects, my disability made it easier to deal with her exacerbations. Our house needs me to be wheelchair accessible. In other words, it can meet her needs. She likes to hold the handle of my chair while I’m pushing because she’s hard to walk now. A few years ago she would have pushed me. Now I can support her walking.
It was fortunate that she was diagnosed very early in her illness. That meant she had spent seven years still independent, and I tried to fill that time with a fun experience, such as a day trip to Paris. She may not remember them, but I do – and I cherish them.
There are still many moments of joy and laughter. Alzheimer’s disease has important personality changes that emphasize certain aspects of human behavior. My mother experienced a rebellious teenage stage last year. One night I went home from work, found her smoking cigarette and wore all the jewelry as well as all the items. It was as if Elizabeth Taylor had welcomed me.
I was frustrated as she kept removing her mask while walking her dog after repeatedly explaining that we were in the midst of a pandemic during the first blockade.
Indignation, I asked her if she knew why wearing a mask was so important, and she replied indignation.
It took me a few minutes to regain the calm I was laughing at.
Music can be the key to connecting with people with Alzheimer’s disease. My mother and dad have worked in the music industry for over 30 years. She was a seamstress and made the most magnificent clothes. So Dame Vera Lynn doesn’t intend to cut it. She is much more Rolling Stones.
Last summer, while being caught in a traffic jam, Spandau Ballet came to the radio and Mom suddenly turned up the volume and began to belt the lyrics for “gold.” I don’t know how she knew the lyrics because I didn’t know she was New Romantic, but her enthusiasm was fun to see.
My mother was an extroverted and fearless woman, and I got my resilience from her. While working in the music industry, she met people from all disciplines. One night she went home enthusiastically about an Australian called Heath, a young actor who was chatting with her all night. (Yes, it was Heath Ledger).
On another occasion, she was spending time chatting with Faye Dunaway. Her laughter was loud and filled the room. She was enthusiastic.
Mom is now much less verbal, but her clear days are pure joy. When she comes back, I’ll tell immediately: she has a sparkle in her eyes and greets us with a radiant smile.
I don’t know how long it will last. Last weekend she was clear all day and it was a gift.
Every day poses its own challenges, but today, the day of World Alzheimer’s, I want people to know that Alzheimer’s disease is more than a dark tunnel of sorrow. If you look for them, there are cracks in the light.