Mar 2, 2013

Alzheimer's Caregivers are the Chosen

Each Alzheimer's caregiver has a common experience. This experience naturalizes when we first realize, We Are Not Alone. We are connected. It is the collective spirit that gives many of us the strength to carry on.

By Bob DeMarco
Alzheimer's Reading Room

We lived our lives one day at a time.

My name is Bob DeMarco, I am an Alzheimer's caregiver . My mother, Dorothy, lived with Alzheimer's disease. Dotty went to Heaven on May 25, 2012. I preferred to think of her as deeply forgetful.

Most people believe that Alzheimer's caregivers have no choice. This is not my belief.

As for me, I knew I was the ONE long before my time came.

As my mother grew older and older I often wondered how she might die. All of her vital organs were in good condition. I sometimes thought, some day she will just stop ticking. At least I hoped it would happen that way.

It never occurred to me, not once, that her most vital of all organs, the brain, might get sick.

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I understand that some people are going to read this and think I am nuts. That is okay by me.

Let me start by explaining. What lead me to believe that I was Chosen? Simple really.

How can you explain that when some people meet me, and before they even know me, they look me in the eye and say, "you are the one".

Yes I am. I am a ONE. The Chosen One.

Please don't misunderstand me. I don't think this makes me special in any way.

I fully understand that many ONE(s) come to Alzheimer's caregiving kicking, screaming, and lamenting. Why me?

Others accept the role seamlessly. They assume the role much in the same way as the sun coming up in the morning.

Don't get me wrong. We come to this role in our lives with little or no understanding of what lies ahead. Only a small number of us know that Alzheimer's is on the horizon. The vast majority of us never expected it to happen? Why me? Why us?

When Alzheimer's strikes we all go through an emotional metamorphosis. Fear, anger, denial, the full circle of emotions.

Why me?

As time goes on, as I meet more and more caregivers in person, and in the virtual world, I become more and more convinced that we are Chosen.

If not us, who then?

Many people believe that we have no choice. This can't be true. There are many alternatives. Simple alternatives really.

Let me put it this way. Either you are in or you are out. You get to decide. You get to choose.

If you are the Chosen One you will be reborn, in our case we are reborn as an Alzheimer's caregiver.

When the fog clears, we assume our new role in life . For most of us, this will be the greatest challenge of our lives. We rise to the occasion. How do you explain our ability to rise up, out, and above ourselves?

There must be an explanation.

Simple, we were Chosen.

Here is something that I don't think is well known or understood, the Chosen all make the same decision. They decide to give the person living with Alzheimer's, or a related dementia, the highest quality of life possible. This is our station in life at the time.

This is what we do.

There are many signs that tell us we are the Chosen. For example, when two Alzheimer's caregivers meet at random, meet for the very first time, they have an immediate feeling of affinity for each other. A feeling that is very different from what you might feel when you first meet someone. A bond. We understand.

As the Chosen, we have a special, hard to explain, feeling and high regard for each Alzheimer's caregiver. The easy explanation is that we care, but it goes much deeper than just caring. These feelings are so very strong because they are of a spiritual nature.

As the Chosen, we unleash the spirit from within. It is this spirit that connects us.

Each Alzheimer's caregiver has a common experience. This experience naturalizes when we first realize, We Are Not Alone. We are connected. This connectivity is the collection of our spirits. It is from this source that we garner the strength to carry on. Collective strength and spiritual contentedness.

It is collective spirit that gives many of us the strength to carry on.

Alzheimer's caregiving is a purposeful endeavor. For each and every Alzheimer's caregiver there is a purpose. Not a single purpose for all, a single purpose for each individual caregiver.

Yes, I believe each and everyone of us is called for a purpose. Not by accident. This is an important part of our collective life. An important part of our metamorphosis here on earth.

Alzheimer's caregiving is not a science. Alzheimer's caregiving is more like a leap of faith.

Faith requires goodness, kindness, trust, and a transcendent acceptance of reality.

So the real question is not, Why me?

The real question is, What is the purpose?

This is a rewrite of a previously published article.

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Originally published November, 2011