Wednesday, 2 August 2017

Care Partner Wednesday--I Speak Dementia


Imagine you are 10 years old. Do you remember the house you lived in at that time? What did it look like? What did your mom and dad like to wear? Did your mom wear an apron and make your favourite foods? Was your dad busy at work all day, and did the family eat around the table at night? Did your brother tease you, and your sister take your things? What about the friends you played with
--what were your favourite games?

What if you weren't imagining or remembering. What if you woke up one morning and this was your world--except it wasn't. You feel like a 10-year-old version of yourself, and you expect to hear your mother calling you for breakfast at any moment. Except something isn't right. You look around, and nothing is familiar. This isn't your room. This isn't your house.

What would you do?

You'd say,  "I want to go home! Where is my mother? She's going to be looking for me!"

Now, what if someone came up to you and said, "Of course this is your home. You live here." You look around, and you know they are lying because you know this isn't your house.  Even worse, someone says to you, "Your mother? you're 80 years old. Your mother died years ago."

Your reality--your real world--is the home you grew up in, with your family all around you. My challenge, as your care partner, is to leave my reality and enter yours. I'm not lying to you, or patronising you, but I enter your world with you, and we explore it together.

So, as you panic, because you are in this "twilight zone" state, where nothing is familiar, and you can't find the people you love, I need to go there with you.

"What does your mother look like? I bet she is a good cook. What is your favourite food that she cooks? I bet she has lots of advice for you--what kinds of things does she tell you? My mother always told me to eat my peas, but I hated peas, so I always looked for ways to get out of it. Did you use to do that? Was there a food you really hated?"

Slowly, your panic dissipates, and you begin to reminisce.

Dr. Bill Thomas, the founder of the Eden Alternative, has said, "if you have met one person with dementia, you've met one person with dementia." Every situation is different, every person is unique, and what works today may not work tomorrow.

Speaking dementia requires creativity. The bottom line is to realize that the person with dementia is in a different place right now. You need to find the place where they are and go there with them. You should never try to drag them back to your world. That will confuse, frighten and anger them, and it won't work. In the end, they will know you are wrong.

Creative Speaking

  • One daughter made a fake medical degree and framed it for her father, who was convinced he was a doctor. (He had started in medicine, but the war interrupted his efforts. But in his mind, he practised medicine, so his daughter made it happen.
  • The same man was convinced he'd been asked to appear as a guest conductor on the Lawrence Welk Show (long after Mr. Welk was dead because he saw reruns on TV.) His daughter bought him a conductor's wand and big band CDs, and he conducted the band. 1.
  • I have spoken on a dead phone to a "father," asking him if his daughter could stay for dinner with us. She was afraid he would be angry if she didn't leave right now. He "gave his permission" and she immediately relaxed. After dinner, she'd forgotten the whole conversation.
"Validation is not about treating someone as a child. It's about respecting the person with dementia as he or she sees the world. It's about overcoming our own bias. It's about adding some dignity to the last years of our elder's lives by accepting that maybe there is more than one way to see the world. There is our way, of course. There is our neighbour's way. And there is our elder's way, even when dementia is present." 1.

1. https://www.agingcare.com/articles/validation-therapy-for-dementia-166707.htm

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