Why is Understanding the Alzheimer’s World Helpful in Caring for Alzheimer’s Disease?
Alzheimer’s World is a term coined by Bob DeMarco, Founder of Alzheimer’s Reading Room and Alzheimer’s Front Row. These wonderful blogs were named #1 and #2 in the Healthline.com 25 Best Alzheimers Blogs of 2013.
And Bob has clearly and concisely describes how caregivers can peek inside Alzheimer’s disease by understanding how someone with it sees the world, and reacts to it. Over the past 6-plus years he has blogged about his journey caring for his mother Dotty.
And in this post he explains how recognizing Alzheimer’s World changed his caregiving…
Friday, October 11, 2013You have to be actively involved with a person living with dementia in everything they do.
By Bob DeMarco
+Alzheimer’s Reading Room
Many of you are new to the Alzheimer’s Reading Room so I’ll start by mentioning that I studied communication in college and graduate school.
For six and a half years I studied how people communicate, how they make decisions, and everything from Aristotle, to nonverbal communication, to risky decision making.
My initial goal was to teach at a University, do research, and eventually consulting with businesses. That all changed when I found my way on to Wall Street.
I studied and learned all kinds of communication techniques during those years in school, and then I embarked on a mission to perfect them.
So when I arrived on the scene to take care of Dotty in 2003 you would think all I had to do was use the communications skills I had developed over the course of my life and everything would be “hunky-dorey”.
As is turned out it was more like “heartbreak hotel” in the beginning.
I had a good grasp from day one that when my mother was being mean spirited or downright crazy that it was the Alzheimer’s disease that was causing the problem.
Her brain was sick — broken so to speak. So I never had a problem understanding why she was being so difficult and challenging.
In spite of knowing and understanding this as clear and clear can be, it was still driving me crazy. Our daily interactions included an enormous amount of stress and dread even though I was trying as hard as I could to avoid it.
After about 18 months, I finally concluded that I was going to need to stop trying to “reason” with my mother; and that, I needed to find a “new way’” to deal with her.
I was trying to unlearn the things that didn’t work and use the things that did work. This didn’t work.
I had been communicating with my mother in a certain way for my entire life,
and no matter how hard I tried I would eventually fall back into that pattern.
I couldn’t unlearn what I had been doing my entire life. Bingo. Aha. I finally understood I needed to learn a brand new way of communicating with my mother. A new way to communicate with someone living with dementia.
One night while working with my da Vinci pad I came to an important conclusion — something had to change, and that something was me.
I would never be able to “unlearn” my entire life. I just couldn’t do it.
I concluded I needed to invent a brand new world, a place that was very different from the world I had lived my life in.
I needed to invent a new place, go in there, and start learning from scratch how to deal with a person suffering from Alzheimer’s disease. Don’t get me wrong, I was taking my skill set with me, but I needed to learn how to think, act, and communicate in a new way.
In my new world, I was going to learn how to walk backwards, turn left instead of right,
and to accept everything that was happening as the “new normal”.
After a long long time, I gave my new world a name — Alzheimer’s World. Dotty and I would live together in this new world.
Next, I did something I could never have expected. When I knew that I needed to shift gears, to get into the World, I started taking one giant step to the left. In order to get to Alzheimer’s World, I had to physically step into Alzheimer’s World.
After a couple of hundred practice steps it started to work. I would step in, shift the mental gears in my brain seamlessly, and I learned how to communicate with someone living with Alzheimer’s disease.
I learned how to communicate with my mother on her terms.
Here are the best parts.
First, instead of getting bent out of shape when problems arose, I actually started feeling very comfortable, very calm.
Second, the same exact behaviors that were hurting my heart, that were driving me crazy, and that were stressing me out were now expected. I had arrived. I finally accepted the new normal.
Some of the things that Dotty did still bothered me. But mostly they made me laugh (happily I mean).
I thought, “here we go again”. Imagine that, laughing instead of crying or getting all bent out of shape.
Once I learned how to live and thrive in Alzheimer’s World,
Dotty became a nicer, kinder, gentler person.
Now don’t let me mislead you. This took about 4 years. Don’t worry, you can do it quicker than I did. You now have the benefit of my experiences here on the ARR.
Once I had Dotty calmed down and secure, and me calmed down and confident, I decided based on that positive experience that I could accomplish much more.
I mean, Dotty stopped being mean and nutty, and I stopped feeling all stressed out.
Alzheimer’s World is a good place. A wonderful place in fact. This is what I learned.
Once I could actually deal with Dotty effectively, communicate, I decided we could start attacking the big problems.
The big problems? Pee, Poop, Shower, and a real big problem — the word NO.
As far as I can tell the majority of Alzheimer’s patients say NO (about 70 percent). Now in the real world, NO means NO.
In Alzheimer’s World NO means, I don’t have a clue what you are talking about.
Everything you do with a person living with Alzheimer’s has to start and end with positive reinforcement.
You have to be actively involved with a person suffering from Alzheimer’s in everything they do.
Finding the way someone with Alzheimer’s or another dementia looks at the world can change your caregiving. It can lead to reduced stress and increased understanding.
After Lisa’s mother was diagnosed with Alzheimer’s disease, Lisa learned this for herself.
Lisa’s mother became afraid of the shower. She became angry when Lisa wanted to give her a shower. Her mother’s fear was so great Lisa was afraid her mother would injure herself or Lisa.
So, Lisa started giving her mother sponge baths. No shower, no bathtub. Sitting in a chair for most of it, and finishing up in the bed to reach places not accessible when Lisa’s mother was sitting in a chair.
It made bathing safe and MUCH less stressful. In fact, it became a time of joy and togetherness for Lisa and her mother.
What have you learned about communicating in Alzheimer’s World?
Share your story in the comments to help other caregivers find solutions.
From my heart to yours… Laugh Well, Love Well and Live Well!
Ina Gilmore, M.D. (Retired)
“The Knitting Dr.”
Founder, www.CaregivingWithPurpose.com and www.TheKnittingYarn.com
Ambassador of Caregiving at www.HowToLiveOnPurpose.com