Mom’s life with dementia is the ultimate team effort. Lindsay, my uncle, Mom’s friends, the wonderful staff at her assisted living community and I are all part of Mom’s team–with important roles to play.
Mom’s demeanor is our scoreboard. Her smiles and laughs are the trophies we play for. In a lot of ways it’s our life with dementia too. Sometimes wonderful, lots of times hard, and always fulfilling.
Learning as we go
For my part, I never planned on being a caregiver or expected a life with dementia. I wish I didn’t have one because that would mean Mom’s living the life she should be as a 72 year old retired nurse with an insatiable appetite for all kinds of fun. But our reality is that we do have a life with dementia.
Much of the road we’ve been walking has been trial by fire and that’s ok. We’re figuring it out. I’ve learned a ton so far and as the spanish proverb goes, there’s no substitute for experience.
It doesn’t get better as I accumulate more experience caring for Mom (dementia still sucks) but to me it becomes more manageable.
I’d be here a while if I tried to write down all that I’ve learned along the way. Maybe I’ll try that someday but for now I’ve chosen to focus on one particularly helpful lesson learned that’s made our life with dementia infinitely more manageable. It came from a person I trust and was unexpectedly hard to hear.
Stop correcting Mom.
A simple sentence that initially made no sense to me. How can I not correct her?
What she’s saying doesn’t make sense.
It is not true.
What is she thinking?
I know that did not happen.
That is not correct.
Accept and redirect
How will not correcting her help me? How will it help us? I didn’t understand. When I challenged the recommendation, here’s what this trusted person told me:
I understand your reaction.
It’s not about you. You’ve done nothing wrong.
As a person living with dementia, your mother has her own reality.
You need to embrace her reality. To do that, you need to stop correcting her.
Unless it’s for your mother’s safety, stop correcting her. Instead, accept and redirect.
At wit’s end
The day I was given this advice, I was at my wit’s end. For months, Mom’s dementia reality had been writing itself deeper and deeper into the script of our lives. Instead of seeking to understand and adapt, I was hardening my resolve. I was denying.
Mom would say something that I knew wasn’t accurate. Out of reflex, I’d correct her. She would disagree. I would disagree. And then we were in an argument–smiles nowhere to be found.
It started happening occasionally, then a couple of times a week, and before I knew it, it was happening in every conversation. Day in and day out. I was at my wit’s end.
Three words changed our life with dementia
To me our disagreements were about logic. To Mom, they were about dignity. So what if Mom has some detail(s) about her/our life wrong? Small details? It doesn’t matter. Large details? Doesn’t matter.
Mom’s smiles matter. Her laughter matters. Life with dementia is a team effort and they’re the trophies we play for. When I stopped correcting Mom, we started winning again.
Can you relate?
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