I rejected the idea that the situation was hopeless and then it happened -
I Found My Mom in Alzheimer's World.
By Bob DeMarco
Alzheimer's Reading Room
When I started taking care of my mom, Dotty, back in 2003 there wasn't a lot in print or on the Internet about Alzheimer's. This turned out to be a good thing for me.
I tired to find people that could tell me what to do - they didn't exist either. I thought nurses would be able to tell me what to do. Nope.
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I actually believed that all I had to do was keep a good positive attitude, be kind, understanding and caring and everything would work out fine.
Boy was I wrong about that one. The harder I tried the worse it became. It just seemed like everything was backfiring on me. I would try to help my mom and the next thing I knew she would be in her bedroom, in her bed, and refusing to come out. I really didn't do anything wrong but that is not the way my mom saw it.
I kept banging my head against the wall over and over - same result.
Then I decided to invent a new place. I called it Dotty's World and then shortly thereafter Alzheimer's World.
The best thing that happens when you get to Alzheimer's World is you come to a simple understanding - it's not about me. Yep, its not about me.
When you get to Alzheimer's World two important things happen. First, all the stuff that seems so crazy in the real world is normal in Alzheimer's World. You know its gonna happen and you learn to accept it. Oddly enough, all the crazy stuff becomes normal and easy to accept.
The second thing that happens is you stop trying to drag the person living with dementia back into the real world. There is no need to do this. Why? You are right there with them in Alzheimer's World. You get the hang of the place pretty quickly.
Here is a simple example. My mom would say on and off all day long "I'm hungry, I'm starving". She would say this immediately after eating a steak, baked potato, and broccoli. I would of course explain to her upside and backwards every time that she could not possibly be hungry. Bye Bye mom, off to the bedroom she would go refusing to come out.
After I made it to Alzheimer's World when my mom would say "I'm hungry, I'm starving" I would accept it. I mean wasn't it possible that her brain was telling her she was hungry? She thought she was hungry - period end of sentence. What did I do? I would say okay mom let me finish what I am doing and we will eat. Or, give me ten minutes and I'll cook.
Guess what happened? Mom accepted that answer. She wouldn't keep bugging me about it. She forgot she was hungry and she forgot what I said. A little while later we would go through the same routine again.
I wrote recently about how it is common for Alzheimer's patients to so no. Some say no to just about everything.
Here is a good example of how to deal with the problem. A reader wrote and asked - "Do you have anything about trying to convince a dementia sufferer to leave his home and perhaps go out for a walk".
I turned to our expert Rita Jablonski-Jaudon to answer the question. Rita provided some good examples of how to deal with this problem in this article
Over time I learned how to rewire my own brain to deal with all the change that comes when you start caring for a person living with Alzheimer's. It does take time and adjustment.
As I rewired my brain and began to better understand my mom and how she was thinking and feeling our life together improved - dramatically. Dotty became calmer and began to trust me once again. Her mood improved dramatically.
Much of caregiving is about our brains. If you think it is hopeless - it will be hopeless. If you convince yourself the situation is horrible - it will be horrible.
On the other hand, if you gently remind yourself that your loved one is fragile, easily confused, and not able to use their brain in the way we have come to accept you just might be able to sort things out.
I rejected the idea that the situation was hopeless. I just kept on trying and trying. And then it happened
I Found My Mom in Alzheimer's World
How to Get Answers To Your Questions About Alzheimer's and Dementia
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).
The Alzheimer's Reading Room contains more than 5,000 articles, is read in over 206 countries and has been published daily since July, 2009.
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"All of us in the Alzheimer’s community are fortunate that Bob has taken on this important work. At Cure Alzheimer’s Fund, we encourage people to follow the Alzheimer's Reading Room; and, we rely on it ourselves to stay up to date and in touch."- Tim ArmourPresident of Cure Alzheimer’s Fund