The first 18 months of caring for my mother, Dotty, were very difficult. I usually use the words burden and heartbreak to describe that period in our lives.
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I finally concluded that in order to communicate with my mother I had to change. I had to develop a new set of communication skills in order to deal with her new reality.
This simple realization lead me to the creation of what I now call Alzheimer's World.
Over time, I learned how to step seamlessly into this brand new world. It did take lots of time and effort to get to where I needed to go. But, first I had to understand where I needed to go.
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During the first 18 months of caring for my mother most of the things I tried backfired on me. Sometimes I would jump in an try and help my mother do something. This often lead to her becoming angry and going into her bedroom and refusing to come out.
Why I thought, I am just trying to help her.
Sometimes my mom wouild want to do something - like move back home to south Philadelphia. My mother had not lived in south Philadelphia in over 50 years. I would try to explain why she couldn't move back. The more I tried to explain, the more confused she became and then angry. I of course ended up upset and stressed out.
Why would she want to leave me? I was taking care of her 24 hours a day, 7 days a week. Didn't she understand this? Obviously, she did not.
So I finally made it to Alzheimer's World. Alzheimer's World is a kind and gentle place. A very simple place. A place where we begin to understand what it is like living with dementia. A place where we accept that Alzheimer's changes the brain, and changed the way a person thinks - and feels.
What did I do differently?
I started to lean up against the wall and watch. Instead of jumping in when my mother rummaged around in the refrigerator, I just watched. I started to understand why she was doing what she was doing. I accepted it. And then, I started to understand the way her brain was working. Why she was doing what she was doing.
I started developing tools to deflect her away from her more difficult behaviors. You can learn more by reading this article - How to Use Ice Cream as a Memory Care Tool .
I introduced a toy into our lives. A toy who became my mothers best friend; and, a source of respite care for me. Learn about this wonderful toy - Toy Improves Mood and Behavior in Alzheimer's Patient.
Then I did something very simple, I reintroduced the word WE back into our lives. I decided we would start living our lives, instead of living in a cave by ourselves like we were doing.
I learned that bright light and socialization helped to improve both my mother's mood and her behavior.
And then gradually, I started to learn how to communicate effectively with her.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).
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