When I’m asked about my care giving journey, I tend to gloss over the first few years. They were incredibly tough because my parents didn’t recognize they had dementia, The term is called anosognosia.
I wish I had know this YEARS ago. I hope it helps you to know that it is a medical term and is very common. Anosognosia affects up to 81% of people with Alzheimer’s and some studies show up to 77% of patients suffer anosognosia after a stroke. My mom had a stroke and my dad had Alzheimer’s.
When my parents were still driving and trying to manage their household and checkbook, we were very concerned and told our parents. They were dismissive, angry, and became paranoid. It all makes sense to me now.
Back in August, 2012, I wrote a blog wondering How Many Times Can you Hear You Have Dementia? I kept trying to find the right doctor, or test results to help my parents understand why we were worried for their health and safety. I finally realized they couldn’t or wouldn’t accept the diagnosis. From that point forward I just managed around the issue and worked in the background to find ways to help my parents. It lead me to understand why the first doctor that diagnosed my dad told me “sometimes you just have to be sneaky.” I finally realized what he was trying to help me understand and learned how to help without being disrespectful.
Trying to help someone with dementia who doesn’t recognize they have it, and are unable to, can be very difficult. This blog started so I could vent, as well as share what I was learning. I’m surprised and pleased to know there is now a term for it, but also, gotta tell you a little frightened by this information.
Because I was worried I might end up in my parent’s shoes, my husband and I set up our estate plans to put in allowances for these issues and I have letters to myself the kids can mail to me. I am hoping that history won’t repeat itself in more ways than one. Thank goodness I’m a lifelong learner. Absorbed.