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.
Like the overwhelming majority of the other 34.2M unpaid family caregivers in the U.S., I had no training when I became a caregiver. I had love and a determination to figure it out but not training.
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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Layne R says
I can so relate! My mom jumped headfirst into Lewy Body believing that she was Rebecca West (H.G. Wells lover) and her car mechanic at the dealership was the reincarnated H.G. Wells. Since then the story has exploded, with all kinds of twists and turns, including a torrid love affair with her 27 year old physical therapist at the rehab after she broke her hips, and a deep and ongoing relationship with her eye doctor. We have learned not to confront her with our reality, but unfortunately, her reality has become dangerous. She refuses to see her primary care doctor, because she insists that her eye doctor is also her medical doctor and she will only follow directives from him. She recently refused to get out of her recliner for a month, because she said her eye doctor and the young therapist came in secretly in the middle of the night to perform surgery on her and they told her she needs to stay sitting. This resulted in a bad UTI and some related unpleasant events. She refused therapy in rehab when the therapist she was “engaged” to wasn’t on duty and then refused to leave rehab after her time was up. She insisted her eye doctor was picking her up to take her to an apartment he had set up for her, resulting in thousands of dollars of extra charges from the rehab. These examples are just the tip of that proverbial iceberg. Every week there seems to be something new. Every professional we have encountered during Mom’s ordeal has said “Don’t Worry. We’ve seen everything. We can handle her.” Every one has had to eat those words!
We moved her to assisted living, where they moved her to independent because she refuses to allow anyone to assist her. “Doctor’s orders”, you know. So we do her grocery shopping, cooking, cleaning and laundry, traveling 45 minutes each way.
We (my sister and I) very much have learned that arguing with her perceptions is pointless (although truthfully I still have to bite my tongue – a lot!). But when her health and safety is involved, how do we get past those delusions?
Matt P says
Thanks for reading and sharing a slice of your story Layne. Much love to you, your sister and your mom.