Learning to roll with Mom’s reality was one of the earliest and hardest lessons I learned as a dementia caregiver. Our reality, now that she is living with dementia, is that her reality is, at times, different than mine. And I need to roll with it.
When we first started down this road I couldn’t get my arms around the concept. My reflex was to correct, challenge, and debate Mom when I heard something that I knew wasn’t true. Because it wasn’t true, to me. But I didn’t understand at the outset of this journey that what I was hearing in those moments was true to Mom, at that point in time–and that was all that mattered.
Hard but valuable lesson
Nothing good ever came from my correcting and challenging. It inevitably sent us tumbling toward argument and worse, it embarrassed Mom. It made her feel less than. But thanks to help from friends who’ve been there and organizations like The Alzheimer’s Family Support Center of Cape Cod, I learned to roll with Mom’s reality.
Instead of challenging her, I (try) to embrace what I’m hearing and redirect (if necessary) as gently and positively as possible. It’s still uncomfortable and I constantly have to fight the reflex to correct her, but so far it’s proven to be a wonderfully valuable lesson.
We don’t argue nearly as much and I take comfort in the belief that I’m not further diminishing Mom’s confidence. Dementia has already robbed her of enough of that.
A new test
Rachael Wonderlin, who runs a fantastic blog on dementia care called Dementia By Day, touches on the importance of embracing the reality of someone living with dementia in her post It’s time we ditched the word ‘lying’ in dementia care.
“When you embrace someone’s reality, you understand that their reality has shifted, and you must shift with it.” — Rachael Wonderlin, Founder of Dementia By Day
I love that quote and need to remember it now more than ever. Even though I’ve learned the skill, I haven’t mastered it. And recently I’ve been put to the test.
Mom’s new (old) reality
Mom spent her career as a nurse. She spent thirty-five years caring for people and by all accounts, loved every minute. From memory and talking with Mom, she loved caring and building relationships with the people she cared for. Even in retirement, she found side jobs providing companion care to those in need. It has always been a significant piece of her identity.
The problem is, it still is. For the last couple of weeks, Mom’s dementia has her believing that she’s still a nurse and that the staff at her assisted living community has been asking her to help out with other residents.
Until now, when I’ve had to roll with Mom’s reality, it’s been only for a point in time. After that particular conversation, the topic is gone and doesn’t come up again. But this is different. Knowing what a big part of her life nursing was, it feels bigger.
I interpret it as an outward sign of Mom’s inner fight with dementia. I picture it as her real identity, the real Mom, being unjustly jailed and wildly banging the bars of her cell while screaming demands at the top of her lungs to be let out immediately.
That’s the image in my mind each time I talk with Mom and she tells me that the staff at her assisted living community asked her to care for a new resident or help with her neighbors medication. Her words and my imagery fill me with sadness. For Mom. How horrible that must be for her.
But I know it’s best to roll with her reality. So that’s what I’ll do.