Cathy Shaw was reserved when we met, apprehensive about the interview questions to come. That reluctance disappeared quickly and Cathy confided that it was cathartic to talk about her experience with dementia openly because so many people did not want to listen.
Now 67, Cathy reflected back on the fear and she felt in her late 40's when she began to sense her mind was not functioning as it should. Several of family members had suffered with Alzheimer’s - her mother, aunt, uncle, an older sister – and she was terrified.
She kept her terror locked inside for a few years before finally seeing her doctor. Unfortunately, like many people with younger-onset dementia, Cathy was misdiagnosed and told she was simply depressed and should try therapy. Despite her family history, cognitive testing was not prescribed. It was not until after several frustrating years and switching doctors that she had cognitive testing and was diagnosed with dementia.
Reflecting on those first few years in her 50s, Cathy described constantly battling the stigma of Alzheimer’s. Her friends refused to believe the diagnosis. People she had known for years stopped calling or would look past her when they bumped into her in town, speaking to her husband John like she wasn’t even there. Cathy told me “My group of friends was always too polite to say anything about it or ask any questions. Time after time people would tell me ‘Oh I’m just like you. I forget things too.’ It used to make me so angry but now I’ve kind of given up. They look at me and it makes them think of their future and they look away or avoid me. Even the neurologists - when I had my recent evaluation the doctor spoke to John the entire time. Talking about me when I was sitting right there. It made me so mad!”
“I’m isolating myself from my friends now … finally. The stress of trying to be normal and have “appropriate” responses. It’s so hard and stressful.”
When I asked Cathy what her struggle has taught her she replied, “I’m finally realizing at this age that all the worrying I’ve been doing all my life has been almost useless. I always thought I was preparing my self for the next thing. But now I know you can just walk up to the next thing and prepare then! Worrying is useless. I really have learned, what will be, will be.“
I asked Cathy what advice she would give newly diagnosed individuals and she told me’ “The best thing you can do is find a group you can join. Be part of a caregiver group or a group of others with dementia. It’s so helpful to be with people who understand what you’re going through. You don’t feel so alone.” She quickly added, “Listen. Just listen. That is all anybody needs. Don’t tell them that you forget things too. Just stop and listen. And if we did that – how much kinder would life be?"
"You can’t fix this. And we are going to learn to be ok with it."