You can turn burden into Joy. I know you can because I did it. Don't go thinking I am different. I am not. I am an Alzheimer's caregiver just like you.
Alzheimer's Reading Room
When I am talking to gerontologist around the world that work with Alzheimer's patients and caregivers one word keeps popping up - anger. Alzheimer's caregivers are often angry.
I understand what anger in the Alzheimer's paradigm feels like. I took care of my mother, Dotty, from November 17, 2003 up until when she went to Heaven on May 25, 2012. Eight and a half years. 3,112 days.
I might add here that seven to eight years is a typical tour of duty for an Alzheimer's dementia caregiver.
Via the Alzheimer's Reading Room I have met thousands of Alzheimer's caregivers that are angry, anxious, and filled with fear. Sadly, all of these negative emotions come with the territory.
In the Alzheimer's caregiver paradigm there are two distinct parts: the person living with dementia, and the person living with the person that is living with dementia.
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The person living with the person living with dementia has a particularly difficult job. They must deal with the new often unsettling and often challenging behaviors of the Alzheimer's patient. The difficult behaviors expressed by Alzheimer's patients often bring up, and out, negative emotions like anxiety, fear, and anger. The caregiver must learn how to deal with, and accept these behaviors.
The Alzheimer's caregiver also has there own embedded feelings. Many times these are the same exact negative emotions: anxiety, fear, and anger.
When we first start caring it is not unusual for us to be fearful of the great unknown. What is going to happen to the person living with Alzheimer's? What is going to happen to me?
A simple example, how long before the person living with dementia won't know me?
For me that was worrisome to say the least. What is it going to feel like I wondered? I was pretty sure it was going to feel horrible.
I asked myself many times, is this fear hovering around in my brain - even though I am not thinking about it consciously right now? I concluded that if I was going to care effectively for my mother I had better deal with this issue. I concluded this because I knew that if I allowed enough negativity to build up in my brain, I would become all the time "negative". Its just the way the brain works.
If I became negative, I was certain my mother would also becomes, or stay, very negative. If I allowed that to happen every day of the week for years was going to be horrific.
In order to diffuse my fear I started thinking about what it would be like if my mother "no longer knew me". Finally after a while, and after the expenditure of a lot of cognitive energy I decided to accept that this could happen, and I decided I would deal with it when it did happen. I accepted that it could happen.
While I was doing this I also started to come to a very different conclusion about Alzheimer's care. I realized I was too fearful of the probable inevitable. The probable inevitable - sooner or later my mother would have no short term memory. I accepted this.
Then a kind of miracle happened. Instead of worrying about my mother's memory I realized that my mother was full of memories. Crystal clear memories of the past. These memories were already embedded in her brain.
The list of memories and things my mother could remember was long, and as it turned out, never ending.
So I started thinking about what my mother did and enjoyed in her life before Alzheimer's.
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My mother like to play bingo. So I made sure she got to play bingo. This actually brought happiness into our lives. Sometime my mother would win at bingo. She would be delighted and happy. In turn, I would be delighted and happy. No fear, anxiety and anger - happiness.
I remembered that my mother liked to read the newspaper every morning, read the comics, and do the crossword puzzle. I decided I would help her do it each morning.
Each day she would read me the day and date from the top of the newspaper. Amazingly, she stopped asking me what day it was all the time.
No, she still couldn't remember day, date, month, year or even what season it was. But, she only asked me what day it was once in a while, and when I answered she seemed to accept the answer.
It was nice listening to her read me the day and date, even if I had to point to it in the paper for her to see it.
My mother told me to get out and that she didn't need me hundreds (maybe more than a thousand) times. Yes, this caused anxiety, stress and anger. Big anger. How dare you tell me to get out when I gave up my life to take care of you. Ever feel like that?
I kept asking myself why is she doing this? I finally realized she didn't really mean it. Well, I actually knew from the very beginning she didn't mean it. So I decided to meet her meanness with an equal and opposite reaction - kindness.
It worked. She stopped telling me to get out. In fact, she stopped completely. I think it should be clear I turned anger into happiness for both of us. Pretty amazing. You can read about this here - Meeting Alzheimer's With an Equal and Opposite Reaction.
I understand that dementia caregivers are often filled with stress, anxiety, doubt, fear, and anger. I understand because I walked in your shoes. I know what it feels like. I lived it.
So here is my advice. If there is something that is causing you constant anxiety, fear, and anger change the paradigm. Accept it, deal with it, and turn it around into happiness or joy.
Those of you that are newer might be thinking right here - how do I do that?
You can turn burden into Joy. I know you can because I did it. Don't go thinking I am different. I am not.
I am an Alzheimer's caregiver just like you.
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized Influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide.
Original content Bob DeMarco, the Alzheimer's Reading Room