Faces of dementia: Andrea's story
Here, Andrea describes part of her journey so far living with young onset dementia as an 2SLGBTQI+ person and parent.
"It started with little things. People I used to work with would show up at the school I worked at and I didn’t recognize them. I’d leave letters or words out when I was writing.
And then there were some things—things I’ve done my whole life—that I couldn’t do anymore. I’ve always ridden a unicycle. Since Grade 4. Well, I’d get my unicycle out and I didn’t know how to get on it. It was really weird given that I’d spent 40 years riding it. And drawing—I’d always been a portrait artist, and all of a sudden, I couldn’t draw. My drawings looked crummy.
So we went to the doctor. My first doctor that I remember going to said, “There’s nothing wrong with you because you’re wearing makeup.” I used to wear a lot of makeup, with liquid eyeliner and everything. She was like, “There’s nothing wrong with you if you’ve got makeup on.”
Then we just went down a road of psychiatrist after psychiatrist. They just kept naming psychiatric problems and heaped on the medication. Which really didn’t help. It made it awful.
And then finally, I was at a neurologist, and I said, “There is something seriously wrong with me. Nobody’s listening.” He said, “Well, what do you want me to do? Do you want a brain biopsy?” And I said, “Sure.”
So that’s what I did. I had a brain biopsy. And it’s showed the [beta-amyloid] plaques. That’s when it was diagnosed.
But the neurologist didn’t even tell me about the diagnosis—a movement specialist did. I’d been having trouble walking. The specialist looked at my chart and said, “You have Alzheimer’s.” And I said, “I didn’t know that.” He said, “Oh, yeah. It’s on your postsurgical record.”
That was literally all we got. My partner was there, and we walked out, and I thought, “I guess I have Alzheimer’s.” I was 48 years old.
"I have to say, my partner has helped me a lot. She’s always there for every appointment. Though there’s nervousness that can come up around medical visits because most medical personnel or service workers say, ‘Is this your sister?’ Then I say, ‘This is my partner.’"
In fact, the diagnosis since changed. Now I know I have frontotemporal dementia. Which I always say is “Alzheimer’s with a little bit of an extra kick.” I joke about it, but it’s not easy.
Around the time I was diagnosed, a lot of other things were going on. My mom had Alzheimer’s disease. After we moved her into assisted living, I’d visit her every day on my way home from work.
Even for me, who now has dementia and is trying to encourage people to think about dementia differently, it’s hard for me to remember my mom apart from the more severe symptoms she had. It’s hard for me to remember that she was really smart and spoke Latin and she read books like they were water. One of the smartest people I’d ever met.
Anyway, my mom died a couple months after my diagnosis.
I’d also gone back to school and was finishing my social work degree. I was raising triplets around that time. Now, my degree hangs over my toilet! It was a joke, since I didn’t get to practice. Given that I have a disability, my partner now works practically seven days a week.
"I really think we need to bring dementia, and stories about dementia, into this time period. A lot of the ways it’s talked about are so dated and old-fashioned."
It has been challenging. I have to say, my partner has helped me a lot. She’s always there for every appointment. Though there’s nervousness that can come up around medical visits because most medical personnel or service workers say, “Is this your sister?” Then I say, “This is my partner.” Then there’s this uncomfortable silence. Some doctors have even asked her to leave the room!
But that’s not all doctors. I actually have some pretty great doctors now.
One doctor took me off all of the psychiatric meds that I didn’t need, from when some specialists thought my problems were all psychiatric. It was a long process to get off of them, and an amazing transformation.
For a while, I couldn’t walk. I needed canes, a wheelchair for rheumatoid arthritis. I had a bunch of different symptoms—memory, hearing, movement, speech—that I didn’t know could all fall under the dementia “umbrella.”
Now I can speak more clearly. Now I’m walking better. I’ve regained a lot. Sure, I’ve lost some other things. But I’m certainly back to living an active life.
I still do a lot of art. I entered the mural contest for MICE [Memory Inclusive Communities Everywhere], a group we started in Haldimand. So now there’s a mural in town that has one of my pictures on it, which is exciting.
In terms of my kids, they were 16 or so when I was diagnosed. Now, one’s in college, one’s in university and one is working. Two of my kids don’t always get it. It’s hard for them. They don’t understand that some of my behaviour is because of the frontal lobe changes. I’ll admit it: I have little tantrums when I get frustrated. They think it’s on purpose, but it’s not. My kids are still very supportive and are learning how to deal with frontotemporal lobe dementia.
The triplets are all creative. We do ceramics, go thrift-store shopping, painting. Another is into woodworking, making monsters and creatures and props. And another is 100 percent into plants, gets on my iPad and shows me pictures of leaves; he preserves leaf skeletons, temperature-controls his room for their plants.
I really think we need to bring dementia, and stories about dementia, into this time period. A lot of the ways it’s talked about are so dated and old-fashioned. You can still be a smart, interacting human, no matter what your age, with or without a dementia diagnosis.”
Photo: Courtesy of Andrea and family, and Faces of Dementia/Hamilton Council on Aging.