Jun 24, 2014

Don't Rob Your Children of the Opportunity to Care

"Mr. DeMarco doesn't have what most of us would describe as a life".

Bob DeMarco
Alzheimer's Reading Room

I took care of my mother, Dotty, from November 17, 2003 until the day she went to Heaven on May 25, 2012. We were together for all but 22 days during those 8 and a half years. This is close to the average amount of time an Alzheimer's caregiver will spend taking care of a person living with Alzheimer's (or a related dementia).

Alzheimer's Caregiver on a lake

I wouldn't change a thing, not a single minute.

Jane Gross a top notch journalist, and author of A Bittersweet Season wrote about a wonderful article about Dotty and me in the New York Times. But near the end she wrote,

"Mr. DeMarco doesn't have what most of us would describe as a life".

I never said that, and I never thought it. In fact, I told her my life wasrich in spirit in a way that I could never have expected.

Sure I was unable to do some of things that others could but I didn't miss them. My life with Dotty was so rich and full I sometimes felt like my heart was going to pop out of my chest.

I was full of Joy.  A kind of never ending Joy that is hard to describe. It stayed with me after Dotty's death. Alzheimer's and Dotty left with me one of the greatest gifts a person could ever imagine. The gift of a Life.

I am alive. I'm thinking, I am feeling everything.


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I learned to life my life one day at a time while caring for my mother. I am still doing it. Each day is new for me.

I am no longer "mailing my life in", and I am no longer on automatic pilot. Every thing, I mean everything, people, places and things fascinate me.

Life is now so very interesting it is hard for me to describe.

Alzheimer's is nothing more or nothing less than a part of Life.

And now to my point.

Over 1,000 Alzheimer's caregivers have written, in one form or another, that they don't want their children to take care of them if they are diagnosed with Alzheimer's or a related dementia. They want to be put in a nursing home or memory care facility.

Why Would You Rob Your Children of the Opportunity to Engage in the Greatest Accomplishment of their Life?

The Act of Caring.

The current facts are simple. Eighty percent  of the persons living with Alzheimer's are cared for at home.

So unless something changes there are going to be more and more Alzheimer's caregivers born each day. Over 1200 each day right now (on average).

This means that 80 percent of the time there is a Number One. The one who cares the most. The Alzheimer's caregiver. They rise out of nowhere most of the time.

There task won't be as difficult as ours. We are slowly destroying the myths. The myths that its hopeless and horrible.

There is Life After the Alzheimer's Diagnosis.

All you have to do is give someone living with Alzheimer's some ice cream. Take a good hard look at their face as they eat it. Happiness and contentment.

Alzheimer's caregiving requires the development of a few skills. Kindness, the ability to guide, and learning how to reassure the loved one living in Alzheimer's World.

Effective caregiving requires change and acceptance.

Simple acts of love and kindness.

Persons living with Alzheimer's love their caregiver with a Love that is so strong it is hard to imagine by outsiders.

No most Alzheimer's patients don't tell us they love us, they show us they love us.

Actions speak louder than words. And this is rarely more true than  in the Alzheimer's caregiver dynamic.

Alzheimer's patients teach of the importance of the tiny little acts. The acts that really count.

Alzheimer's patients teach us how to think and feel. How to really really feel.

In order to understand and receive all you have to do is open your heart and open your mind. All you need to do is pay attention and look beyond the obvious.

Whether or not you know it, you opened your heart the day you started caring. I don't care if you took on your new mission in life while kicking, screaming, lamenting, and complaining all day long.

You Changed, or You Will Soon Enough.

Eighty percent of the time this is true.

Let me make this clear. I understand that some people in the community feel differently than I do.  They might not, yet, agree with my beliefs. In fact, it will not surprise me if many of you disagree with me. I don't mind.

I hope that you will at least consider my point of view. Think about it. Open up your heart. Give my thoughts and beliefs a chance. Keep an open mind.

Please don't rob your children of the opportunity to care.

It just might enrich their lives. Bring real meaning to their lives. Improve their lives in a way they could never have expected.

I know this is true because I lived it myself. And, when you boil it all down I am not much different than anyone else.

I seized the bull by its horns and put it down.

When Dotty went to Heaven we were both happy and content.

Dotty and Alzheimer's left with me with the gift of life. A gift that is hard to describe.

The ability to think and feel. The ability to live each day, one day at a time.

To live life in a way that I could never have expected.

It is really kinda wonderful. Oh yes it is.

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Bob DeMarco
About Author. Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 4,700 articles. Bob lives in Delray Beach, FL.
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