Choice of words matters. Lots. We know this in the broader context of life. But when it comes to how we refer to or communicate with or describe people living with dementia (PLWD), less so. To explain what I mean, why I think it matters, and what I (and we) can do about it, I’ll back up.
Caregiving is a lot like living in an eternal state of looking for a bobby pin in a pitch dark room without a flashlight. There are approximately 16 million people in the U.S. caring for a person living with Alzheimer’s or another form of dementia. While all of our caregiving journeys are uniquely ours, most of us have something in common: we didn’t plan on, and weren’t prepared for, becoming a caregiver.
When I step back and think about where Mom and I started, where we are now, where we’re going and what it takes is surreal (and maddening and sad and fulfilling) to think about. There is a TON that goes into the caregiver’s job description.
At or near the top of that very long description would be the word advocate. So much of what we do day-to-day is advocate on behalf of our parents. We champion their best interests and create the space required to ensure their voices are heard. On big matters, little matters and all matters.
This advocacy work manifests itself most commonly in our (seemingly endless) efforts to make sure new people in their lives have the complete picture of Mom and of Steve that they should have. To us, it’s just as important for a new staff member at Mom’s assisted living community or a new caregiver for Steve or a receptionist at the doctor’s office or a clerk at the store, to know who they were before Alzheimer’s and Lewy Body. If for no other reason than to recognize that they’re a person and treat them as such.
Fire in the belly
If you’re reading this as a caregiver for someone you love who is living with a form of dementia, maybe you understand where I’m coming from here? If you haven’t been a caregiver yet, I wish I could explain it more succinctly. But my desire for people to see Mom and not a disease is a constant fire in my belly. It’s lava-level hot, the hottest ever to burn in my soul. About anything.
When I sense someone treating Mom or Steve like some empty host for Alzheimer’s or Lewy Body I, candidly speaking, always feel I’m seconds away from a massive eruption of my inner volcano.
Um, he’s a person….ya know! He’s living with X and has difficulty with Y….so please just be patient!
Miraculously (and thankfully) that hasn’t happened… yet. Largely because I know that in just about all cases, it is completely unintentional on the part of the offender. And I get it. How are they supposed to know? I’m sure I’ve been guilty of the same unintentional indiscretion prior to the beginning of our Alzheimer’s journey–lots of times.
Worse, I know I’m still guilty of it from time to time…and I’m surrounded by dementia in my life between Mom and Steve. It is difficult because it’s human nature. Uncomfortable things are hard. And life is busy, so busy that we at times forget to treat others like we’d want to be treated. So how does it change?
Choice of words
Slowly and steadily. Doing away with the stigma surrounding dementia won’t happen overnight. I know that. It’ll take years (let’s hope not decades) and many voices. And I believe it starts with our collective choice of words.
A word here and a word there may seem insignificant to some. It would have to me before I knew Alzheimer’s the way I do now. But now more than ever in my life, I know that our choice of words matters. Words can change behavior. They can change our thinking. Maybe not immediately and maybe not even consciously, but they can and do. Think of it in the same way as building good habits.
I did and it’s helping me. Mom’s a person, not a patient. She’s living with Alzheimer’s, not suffering from it. Holding myself accountable to person instead of patient has helped me keep closer sight of who Mom was before Alzheimer’s–in good times and in tough times. Swapping living for suffering has emblazoned a reminder in my head that Mom should really live and not just get by in some broken state because of her Alzheimer’s. And it’s my job to help her.
Will you join me?
We all have a part to play in doing away with dementia’s stigma and our respective parts begin with our words. I see how the idea of changing a word here or there when we speak (or write) may sound inconsequential. But the sum of the parts of those little changes, at a societal level, would be anything but.
They’d be game-changing with respect to how we see, and in turn support, people living with dementia and those who care for them in their every day lives.
Because our choice of words matters.
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Layne R says
Very good points Matt, that I am trying to assimilate.
With my Mom though, there are times we do have to recognize that the illness is talking and not the person. She goes through some very mean and hurtful phases where anyone in range is a target, including us. When she is berating one of her aides for being fat or intent on telling us how we have ruined her life then we have to remind ourselves and the people around her that this is illness and not really who she is. Sadly, as time moves on, it is getting more and more difficult to find the mom and not the Lewy Body! In that respect, I think she is suffering from Lewy Body. I know this meanness is not her choice and sometimes we have to choose the words to remind us of that.
As always, thank you for your thoughtful and thought provoking words.
Matt P says
Lynda – Thanks for reading and sharing. Your points are spot on and I relate. My wife and I are often telling our kids “that’s Mimi or Poppi’s disease, not them”.
And you’re SO right….as time goes on it is more difficult to find the real Mimi or Poppi for us too. Those moments are exceedingly rare for us now…but just don’t want us (or others) to lose sight of who they were before.
Thanks again for reading and sharing your experience.