When you look at it from the eyes of a person who is living with dementia maybe you are the one who is irrational. Irrational in your expectations.
Alzheimer's Reading Room
I think most people think and believe that a person living with dementia lives in an irrational world. Not me.
I had to remind myself - My Mom Was Deeply Forgetful and Living with Alzheimer's
As a person becomes deeply forgetful many of the actions they perform seem to be irrational to those of us who believe we are living in a rational world.
For purposes of this discussion lets call rational world -- Real World.
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When we look at the actions of persons who are deeply forgetful from a real world perspective we tend to view their actions as irrational. Makes perfect sense.
When we look from this Real World perspective and try to make sense of what they are doing we often becomes confused, disconcerted, and often angry. Sometimes we feel sad, and sometimes we think and feel its hopeless.
After I finally came to the realization that
Something had to Change
Something was Me
I changed the way I viewed my mother's action and I accepted them as her "new normal."
I was able to accept because I dared to go into this new and different place and started looking at each episode and each situation from Dotty's perspective. I started looking at the world out of Dotty's eyes.
Instead of reacting to her behavior I asked myself some simple questions: Why is she doing this, What is the catalyst of the behavior?
I also asked myself, why are you getting bent out of shape?
I told myself, you will be seeing these behaviors often, over and over so to speak. If that is the case, aren't they the "new normal".
Much of what was driving Dotty's behavior was deep forgetfulness. She just forgot how to do things. As a result, she started doing things the best way she could.
So for example, if Dotty' left the door on the refrigerator open for five minutes it wasn't because she was being a "bad girl", it was because she no longer remembered that it was important to close it right away.
When I changed, reinvented myself, I invented a new place. At first I called it Dotty's World. Shortly thereafter, I renamed it Alzheimer's World.
Alzheimer's World is a place where the deeply forgetful reside much of the time. So, I made what now seems like a simple decision -- get in there.
I learned that in order to deal effectively with Dotty, and to insure that I didn't make matters worse, that I had to go into her world, Alzheimer's World.
In the beginning, when the episodes would start up, and as I realized I had to go inspect what was going on I did something right before I came up on to Dotty. I took one big giant step to the left. This is how I alerted and trained my brain to know that I was going to enter this new and parallel universe -- Alzheimer's World.
After doing that for a while, I no longer needed to make the step to the left, instead I seamlessly moved from one place to another in my brain.
In addition to the above, I started to imagine that there was an invisible magic line right now the middle of every road and room in our home. Step to the left, go into Alzheimer's World. Step to the right -- back into Real World.
I guess you could say I used the left side of my brain in Alzheimer's World, and the right side in Real World.
I rewired my brain. Once rewired I became a compassionate, caring and loving Alzheimer's caregiver.
Amazingly, once I accepted the "new normal" something amazing happened. Instead of getting bent out of shape, confused, and angry. Instead of complaining and venting, I became proactive to the situation.
Instead of feeling enormous burden, I started to feel Joy.
Instead of getting angry when Dotty left the door open on the refrigerator as she made herself a sandwich, I actually became happy. After all, Dotty was still using her brain and performing a task that was harder to do in Alzheimer's World then it was in Real World.
Dotty didn't hear the beeps. She was too busy focusing on the task at hand, making a sandwich.
Dotty did look pretty cute biting into her sandwich. Happy and satisfied. Why not? It took a lot of effort on her part to make that sandwich.
I learned another good lesson during these episodes by asking myself, how, why?
As persons become more and more deeply forgetful they move and do things slower and slower. Not to drive us crazy, because they are living in Alzheimer's World. Things tend to move slower and slower in Alzheimer's World.
It isn't easy to adjust to this slower pace. You have to learn patience. There is an upside to learning patience. Once you learn, you take this new found patience back with you into Real World.
You might also become more caring and understanding. If you really work at it you will find that stuff that use to bother you, the small stuff, no longer bothers you.
There came a time when Dotty could no longer, or would no longer make her own sandwich. That might have happened because I started making them for her. I can tell you though, I missed watching her do it. Instead of freaking out about the refrigerator.
There is going to come a day when you will look back. I hope you end up like me. I hope you feel Joy.
You can't buy happiness and you can't buy Joy. However, you can help yourself to feel happiness and Joy by rewiring your brain. You do this by thinking positive, and accepting the new normal.
In order to get on the path to happiness and Joy, I suggest you take one big giant step to the left. Do it. Get over into Alzheimer's World.
I know some of you have made the giant step to the left. Thank goodness.
No, I don't believe that persons that are deeply forgetful are irrational. They are different. They are living with a neurodegenerative disease.
Who knows? When you look at it from the eyes of a person who is deeply forgetful maybe you are the one who is irrational. Irrational in your expectations.
You are the one who gets to decide. Go into the World. You might find out that is a much better place than you thought.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a speaker and recognized expert in the Alzheimer's and Dementia Community Worldwide. The Alzheimer's Reading Knowledge Base contains more than 5,000 articles. Bob lives in Delray Beach, FL.
Original content the Alzheimer's Reading Room
*** Empathy the ability to understand and share the feelings of another.
*** Compassion a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate their suffering.
*** Caregiver is a person who gives help and protection to someone who is sick or in need.
*** Happiness is a mental or emotional state of well being defined by positive emotions ranging from contentment to joy. Happy mental states also reflect judgement by a person about their overall well being.
*** Joy is a feeling of great pleasure and happiness. A heightened feeling of happiness.