Bursack: Joining the world of someone living with dementia is different than lying
In today's "Minding Our Elders" column, Carol says going into the mindset of the affected person allows dignified, compassionate communication.
Dear Carol: My mom was diagnosed with Alzheimer’s a year ago. Her memory was a problem early on but now she’s also started to make things up. She thinks events from the past are real and she doesn’t realize she’s forgetting the present. She’s often confused about her surroundings, too.
I’ve been told that you’re supposed to agree with people with dementia rather than trying to make them see the truth, but I’ve always prided myself on being direct so lying goes against my grain. How do I lie to her when I hate lying to anyone? — MC.
Dear MC: I’m sorry about your mom’s dementia. It can be agonizing for us to see cognitive changes like this in someone we love.
The most often used term used for doing what you mention in your letter is telling “fiblets.” I prefer to say that we are “joining them in their reality.” Joining them where they are at the moment offers so much more than merely evading or fibbing. Doing so takes us into their mindset so we can offer dignified, compassionate communication
This is my story: Years back when most doctors were still insisting that we “reorient” people to the reality that we see rather than what they see, my dad had brain surgery that resulted in severe, overnight dementia. The only thing that seemed to help Dad was to join him where he was. Any attempt to “reorient him” to our view of the world would have resulted in frustration, anger, humiliation and a poorer quality of life for him.
What Dad thought was true was as real to him as what I believed to be true. For that reason, I never viewed joining him in his world as lying. I saw it as both the logical and the compassionate thing to do.
Joining a person where they are at the moment represents the most effective way to communicate with someone like your mom. That's because she isn’t choosing this different way of interpreting her reality. It's caused by the disease. It may take work to change your own mindset from truth/lying to include this broader view, but I believe that once you see how effective it is, this approach will likely make sense.
If your mom insists that she wants her now-deceased parents to come and visit, you could say, “They can’t be with you right now, Mom, but we can look into it later.” Then distract her with something like, “Let’s see if there are any birds around the feeder.”
If she says that she wants to go to school today, you could say, “We’ll get ready in a bit but since there’s plenty of time, let’s watch this music video first.”
There are different styles of communication that work best under various circumstances, MC. Communication is, after all, not only about making oneself understood but understanding others. By joining your mom in her world, you’ll avoid unnecessary clashes so life should be more pleasant for you both.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.