We did not allow Alzheimer's to control us, instead we decided to live our lives.
Bob De Marco
+Alzheimer's Reading Room
|Dotty Age 95,|
Lived with Alzheimer's
My mother lived with probable Alzheimer's disease for a long time. I don't really know how long. I do know that I took care of her as her primary caregiver from November 17, 2003 until the day she died, May 25, 2012.
My mother was a strong, healthy women. She never had a major operation or major illness. I was sure that she would live to be more than 100 years old.
When she died there was nothing wrong with her other than Alzheimer's disease. She was in good health.
My mother, Dorothy DeMarco, Dotty died from complications of Alzheimer's disease - congestive heart failure. She was one month from her 96th birthday.
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Alzheimer's disease played a dramatic roll in both are lives. You might be thinking I am going to write something nasty negative here.
You would be wrong.
I thought and believed even before I came to Delray Beach, Florida that my mother would never die until she learned how to accept care from others.
My mother was very good about caring for or about others for her entire life. Of the many she cared for one of them was me. My entire life, all the time.
She cared for many of her neighbors even after she reached the age of 80. She took them to the store, or went to the store for them when they couldn't. She took them to the doctor. She would do this until those persons were shipped home because they could no longer live alone. My mother gave each of them the gift they wanted most - the ability to stay at home as long as possible.
My mother did not charge for these services -
She did it out of the kindness of her heart.
In spite of a long life of care, my mother just seemed unable to willingly accept the care of others.
What did my mother say in those first few years of caring?
Get out, I don't want you here, I don't need you.
A pretty harsh pill to swallow for someone how was taking care of her 24 hours a day, 7 days a week.
After a while, she stopped saying get out. While I did not realize this immediately, we had stepped off of
the path of burden and on to the path of Joy.
Dotty and I together finally figured out how to understand, cope, and communicate in a world filled with Alzheimer's.
And once we did,
We started living our lives.
I am often asked. How did you do it? You didn't have respite care? You did it mostly on your own? How did you stand it?
So here is the answer.
We did it, I did it because we were very busy living our lives.
Yes, we lived one day at a time.
For the most part I forgot my mother had Alzheimer's.
I was too busy figuring out how we were going to live our lives effectively. It wasn't that hard to do. I was getting good and better ideas all the time. Constantly. Oddly, I am still getting new and better ideas.
It was somewhat simple. I figured out everything Dotty liked to do, and they we started doing it. If it worked, we kept doing it. Of course, sometimes we had to do these things a little slower, or slightly different that we had in the past. So we adjusted.
For those of you that are newer, Dotty and I went out and socialized. We met new people we never knew before. Believe it not, Dotty actually made Dementia Friends. Not people with demenia, real friends out in the real world. So did I by the way.
Dementia Plays Dramatic Role In Both Our Lives
As I mentioned, Dotty was not good at accepting care. In fact, she still thought she was taking care of me for many years. And then it happened.
One morning in early January, 2012 my mother put her head on my chest and started telling me I was a good boy. She started telling our neighbors, Bobby is taking really good care of me.
The look on Dotty's face changed. I was not the only one that noticed. She seemed more content, more relaxed, and at times - there - not more there - there.
I started telling my close friends in January, 2012 that Dotty was going to Heaven soon. They were shocked to hear the news.
When they asked how soon I responded, she is just giving me the time to get ready.
Dotty had finally learned how to accept care
I believe this completed her cycle in this life.
What about me?
Well, I am still here. So taking care of Dotty was just a part of my cycle in life. I am a lot like Dotty so I might have to learn some of the same lessons before I soar.
I think there was purpose for me. After all, we still have the Alzheimer's Reading Room. It will be 6 years old soon.
I do want to let you know, I am finally really back.
For the first time since Dotty's death I am starting to feel really strong emotions.
I notice I am better able to articulate myself in public. I was a bit frustrated by this.
I notice a very different look on people's faces now when I talk to them.
It is now time to start taking the ARR to a new level. To unleash it in a new more effective format and way.
I miss Dotty like crazy right now.
Don't worry Dotty, you sent me along the way with a renewed sense of purpose.
You might find these two articles of interest.
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