Art Place 2016

Working with Dementia Patients: 5 Stories, 3 Lessons

Category: Art Place 2016 Marie Bilodeau Written by Marie Bilodeau / January 17, 2017
Senior man sitting at table

Progress with my groups (see the first post) has been slow and full of interesting challenges. Uncertain how best to proceed following my first couple of workshops, I did the only thing any self-respecting individual with absolutely no clue how to proceed can do: I did some research (woo!)

I played on the wild open world of the Interwebs, of course, but also spread my net further. The reality of dealing with a pre-web generation is that a lot of seniors won’t be sharing their experiences online. And the generation taking care of elderly individuals with early onset dementia is rarely online, often too busy with taking care of their loved ones to dedicate precious time blogging.

I’m in my late 30s, with several friends who are older and are either taking care of loved ones with early onset dementia or affected by it themselves, I had an opportunity to supplement my online findings with their stories and experiences. I even chatted up some of the workshop participants for insight.

After all, what better way for a storyteller to learn than through story? I’ll let them tell you about it in their own words. I’ve distilled these stories and broken them down into three lessons, supported by research, which will help me focus my own plans.

In their own words

I AM STILL HERE

“Sometimes, people talk around me like I’m not even there. And, okay, sometimes I’m not. But I’m still a person. I’m still me. And the few times I do notice, it just brings home the fact that I’m self-erasing. Vanishing. Not even worth acknowledging.  I’m still me. I know someday I won’t remember at all, and I know it’s hard dealing with someone like me. But, I’m still me.”

I HAVE LIVED

“I don’t like being condescended to. I don’t like people treating me like a child, or speaking to me like one. Even if I don’t remember how to tie my shoelaces, that doesn’t mean I haven’t lived! I did things, and I read, and I have a whole slew of experiences supporting who I am. I may not always remember the details, but don’t treat me like I’m a child. I’m an adult.”

I HAVE STORIES

“I feel sometimes like people don’t listen to our stories. I know I repeat quite a bit, but it’s tough when no one will listen anymore. That someone is willing to listen is priceless. That someone is willing to share with us, and ask us to share in turn, is heartwarming. We know we won’t remember our stories forever. But we still like them. Telling them makes us feel like we’re still a part of, well, of life.”

I CAN HELP

“We’re early onset.  We can still do things, and I like helping. Maybe not shoveling snow, or cutting vegetables, but I can offer advice. I can help pick up. I can be a good listening ear. I like when people seek out my help, still. It makes me feel less… obsolete.”

I’M NOT UNHAPPY

“At some point, you learn to make peace with your lot in life. If living life doesn’t teach you how to make peace with its injustices, then you’ve been focusing on the wrong things. Don’t treat me like I’m a victim. I’m a person. I’m tough. I can take it.”

The Lessons

Well, there are countless lessons that could be drawn from the stories and the research. But I took away three main ones, to help me focus:

  • Involve them in decisions/plans
  • Make positive assumptions
  • Jog memories

Integrating these lessons will be key, it will help us see what stories we can create together. I look forward to forging ahead and seeing what stories I’ve yet to discover.

Thanks for sharing / Merci d’avoir partagé!

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