Dementia care is the art of nurturing, and caring for, a person living with dementia
By Bob DeMarco
Alzheimer's Reading Room
The cumulative acts we perform each day can make a difference in the success of our Alzheimer's and dementia care efforts.
I starting thinking about this in earnest as soon as I made it to Alzheimer's World.
I use the word earnest because it best describes the seriousness of my intent at the time.
I realized that my state of mind, and the state of mind of my mother, were key factors that determined the success of my caregiver effort each day, and overall.
I don't think Alzheimer's caregivers spend enough time thinking about the importance of each act, each day; or how each act might effect their overall success while caring.
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While caring for my mom, Dotty, I soon came to a conclusion that many of the things I was doing were confusing her. No I wasn't confused, I was confusing her. Dementia patients are easily confused. When confused they often act angry or mean. They also become uncooperative.
A very simple example. Sometimes I would try to help my mom. I thought I was doing the right thing. However, she often became angry and went into her bedroom and refused to come out or even talk to me.
What did I do? I tried to explain to her that I was only trying to help her. Did this work? Never.
Soon I realized this would never work. I also realized I was making this about me. I needed to explain that I was trying to help. I was also trying to explain that I was not at fault. If I wasn't at fault - who was?
I came to the understanding that not only was I confusing Dotty (often), I was living in a perpetual state of confusion. In other words, I really didn't understand the dynamic. I was thinking about it from my perspective when what I should have been doing was thinking about if from Dotty's perspective.
Additionally, I realized that I was judging Dotty in the wrong way. I was judging her as if her brain was the way it was way back when. I wasn't thinking hard enough about the simple fact that Dotty's brain had changed and I had to change. One thing became certain, if I kept on doing what I was doing in my caregiver effort I was going to end up living a miserable life.
And as should be obvious, Dotty was going to end up living a miserable life. We were living a miserable life.
All I was doing was making things worse.
I constantly tried to reason with her, to explain. This only disoriented her. Made her more confused.
Here is a simple example.
Dotty would say, "I need to go buy the lottery tickets". I would answer, "we already bought them". Her response, "no we didn't".
I would then show her the tickets. This only confused her.
Shortly thereafter she would say. I have to go buy the lottery tickets. So I would show her the lottery tickets and try to explain that we had already gone and bought them.
Soon she would become angry and mean. Often she would end up in her bed, curled up in a ball, and refusing to come out of her room.
The cumulative act of my explaining and trying to reason with her had the exact opposite effect of what I was trying to accomplish.
I was caring by using my brain. My real world brain. And it seemed to backfire on me over and over.
The cumulative effect all the way around was that Dotty was becoming meaner and harsher.
Get out, I don't need you, I can take care of myself
she would yell at me.
My own reaction was often negative. And the vicious cycle of complete and total discombobulation continued.
In Alzheimer's World I started to conclude that I could create a paradigm shift by reversing my own behavior and reactions and the cumulative acts I performed each day.
I finally realized that I could not defuse Dotty's confusion by explaining why she shouldn't be confused, or by trying to engage her in a conversation about the "errors" in her thinking.
So I decided to do the exact opposite of what I would have done in the real world.
Instead of trying to explain to Dotty why she did need me, or why she could no longer live on her own without me, I took an exact opposite approach.
I put my arm around her shoulder, put my head on her head (the head hug), and said, I'm not going anywhere.
It completely diffused her. It calmed her down. It calmed me down.
She stopped telling me to get out.
This was one of my first great successes as an Alzheimer's caregiver. A success that lead me to believe we could shift the entire Alzheimer's paradigm over time in Alzheimer's World.
I came to a simple conclusion -- I had to become a guide and a leader. I had to introduce the cumulative acts. I soon learned what I needed to do was to create a safe, secure, and trusting environment for Dotty.
Isn't that what I had been doing all along? No. Not for a person living in Alzheimer's World.
Over time, I slowly introduced a series of activities and personal behaviors that were designed to create a secure, trusting environment for my mother.
One thing I did was to create a very specific routine. We did the same exact thing every morning when Dotty woke up.
In fact, we started doing the same exact things around the same time of day, all day long, every day.
If you saw the movie Groundhog Day, you know what I mean. Dotty would wake up, and it would be the same day, every day.
Each act was intended to lead to the next act. Each act was designed to nurture Dotty, and also to do the kinds of things that were good for her brain and memory.
The most amazing aspect of this aspect of caring, the cumulative acts, is that not only does it nurture the person living with dementia it also nurtures the caregiver.
I was nurturing myself right along with Dotty.
I learned that
the cumulative acts I performed each day were the acts that made the difference.
This my fellow readers is how you leave the burden behind.
I learned and continue to believe that caregiving can lead to great Happiness and Joy.
"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest.
― Thomas Moore.
Be kind, be gentle. If what your are doing is not working try doing the exact opposite. Sounds crazy huh? Well it worked for me more often than not.
When in doubt, go for the head hug.
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Alzheimer's Reading Room
Original content Alzheimer's Reading Room
“The basic intention in any caring, physical or psychological, is to alleviate suffering. But in relation to the symptom itself, observance means first of all listening and looking carefully at what is being revealed in the suffering. An intent to heal can get in the way of seeing.”
― Thomas Moore, Care of the Soul