Researching Dementia

Last summer I was diagnosed with Mild Neurocognitive Disorder (mNCD). One of the first things I did was to read up on dementia, because that’s the scary part. What if I eventually get dementia? What is it like to have dementia? I learned rather quickly to stay away from books written for caregivers. Most of them were “Oh you poor dear, I’m so sorry that you need to watch your loved one turn into a zombie who one day soon won’t be able to recognize you.” That’s not very inspirational to those of us with memory problems.

So I looked for books written by people who have dementia. I wanted to feel what it’s like to be in their heads. At first I ran into too many books written by former academics. They wrote about their experiences as if they were science experiments, and I had already found enough information like that. I finally found a book called, “Somebody I Used to Know: A Memoir,” by Wendy Mitchell. Wendy is a single mom in the UK who has early onset vascular dementia. Her description about how dementia crept up on her has helped me viscerally understand what it would be like to be in her situation, and who knows? I might be in her shoes someday.

Her descriptions are striking, especially the chapter about a day when she was at work and suddenly she didn’t know where she was. If I remember correctly (ha) she forgot who she was also. What she did remember is that her doctor had told her this would happen one day, and she should just wait it out. She got up, left her office, walked down the hallway past all the doors and her co-workers, found a stairwell, and walked downstairs. Eventually she saw a pink room that felt safe, a women’s washroom. She went in, found a stall, set the toilet lid down, and sat there until she came back to herself. That story kicked me in the gut. I know that’s something that could happen to me someday, and I hope I remember what Wendy did. I hope I remember that if I wait, I’ll come back to myself. 

Wendy goes on in her memoir to explain how she’s learned to stay independent. After that episode she told her co-workers what was happening to her, and they discussed what kind of accommodations she would need to continue at her job. She worked for another 6 months after a dementia diagnosis. She then moved from a city to a village where she could navigate by herself more easily. She joined a dementia support group. She was asked to speak at dementia conferences. How she finds her way walking around her village alone, and how she manages to travel all over the country on her own is fascinating. Her descriptions are comparable to how I imagine it would be to be blind and plan solo trips.

Not only did Wendy Mitchell write a memoir (and she’s working on a second one), but she also writes a blog. She lives in a lovely village and takes photos on her daily walks. She writes about what’s going on in her life now, and after reading her book I can imagine myself in her situation, and it’s comforting.

This disorder has caused me to retire from my life long career as a librarian. I feel mostly fulfilled working part time as an office admin at my small UU church, but I miss being a librarian and sharing information with people. If you have questions about cognitive impairment that a research librarian might be able to answer please ask me. I’ll share the answers in this blog, but mostly I plan to share hopeful information. I’ve found that there’s enough doom and gloom out there. I want to focus on living joyfully.

Here is the link to Wendy’s blog: https://whichmeamitoday.wordpress.com/blog/

And her Twitter account: https://twitter.com/WendyPMitchell


Photo by Brett Schaberg on Pexels.com

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