Aug 15, 2012

Alzheimer's Care and the Spirit Within Us

Have you ever asked yourself, where does the strength, courage, and energy to be an Alzheimer's caregiver come from?

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer's Care and the Spirit Within Us
I believe in the Spirit within us.

The concept of Spirit and Soul often overlap.

People often refer to themselves as Spiritual but not Religious.

The Spirit is often married to the concept of Ghost. Like the Holy Ghost in Christianity. There are many different interpretation of Spirit and of the Soul.

Does the Spirit play a role in Alzheimer's care? I believe it does.

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I'll start from two basic premises as they apply to Alzheimer's care. First, there are more than 5 million people living with Alzheimer's in the U.S. Upwards of 80 percent of these persons are cared for at home. How do you explain this?

Second, a long list of caregivers told me that they had a poor or nonexistent relation with a parent when they were diagnosed with Alzheimer's or a related dementia. Yet, when the time comes to care they do. Sometimes, often, they are dramatically transformed. They care.

How do you explain this?

Does one care out of sense of responsibility? Do we do it because we have no choice?  These seem like good and easy explanations.

Most caregivers come into the role of Alzheimer's care kicking and scream. They complain. They don't think they can do it. They vent.

At the beginning, carers often feel a long list of negative emotions: grief, denial, confusion, anger, sadness, and hopelessness among them. Where do these emotions come from? How do we feel them? Why?

There is also another side to the coin. Often there is more than one person who could accept the role of care. Sometimes an entire family decides to do the caring as a group. Sometimes it is just one single person in a family.

Most often it is the ONE. Not the group.

In fact, it is not uncommon for the others, those who are not the ONE, to disappear. To abandon. How do you explain this?

Everyone has a spirit within. A soul you might say. Why do some come to the role of care, while others leave the scene?

Often the spirit within is dormant. Or, it only becomes active when times get tough and call for a deeply spiritual action. The action of caring applies.

Are the body and the spirit one? Or are they distinct?

Some of you might recall that when Dotty went to Heaven, I turned my head and looked up at the ceiling of the room. I wanted to see if she was up there. Not the physical Dotty who was lying dead in my arms, no, the spirit within Dotty. I did not see her and she did not come back like the many people who experience a near death experience.

Those people who experience near death describe themselves hovering above the scene, they feel an enormous feeling of peace and comfort, a bright light encompasses them, they see and hear everyone below.

Some come back with a clear sense that they are destined to complete a mission on earth. It could be simple like caring for their children; sometimes the mission is more complex. Some come back and they don't want to be here, they would have preferred to go into the light.

How does this apply to Alzheimer's care?

You get to choose. You get to make a long list of choices. Some people like to refute my belief that when you are called you are the ONE. They tell me not everyone can be a ONE. Not everyone can do it.

I will allow for the fact that perhaps due to physical, psychological, or emotional limitations not all can do it. I will also allow for the fact that in some cases the best alternative is for the person living with dementia to live in a nursing care type facility.

However, this does not explain away that upwards of 80 percent of those living with Alzheimer's or a related dementia are cared for at home.

The spirit within is strong and remarkable. Once unleashed it brings to the human experience the ability to care, to care compassionately, and to love. It brings change. A change in the way we feel and the way we act, the way perform, and the way we do.

Have you ever had someone say, "I don't know how you do it". Or, ask something along those lines?

Have you ever asked yourself, where does the strength, courage, and energy to be an Alzheimer's caregiver come from?

The energy comes from the Spirit within. From the activation of the Spirit within. As this Spirit becomes fully unleashed the energy, the care, the compassion, and the ability to love become stronger. They grow. Much like a tree grows. Stronger.

Some caregivers say they are tired. They say this in the first year, the fourth year, and the seventh year. Where did they get the energy to make it to the seventh year, or longer?

The energy had to come from somewhere. It comes from the unleashing of the Spirit within.

It seems to me it is hard for some caregivers to accept their role. Have they contemplated the Spirit within? Are they afraid to unleash its power?

I'll close by asking.

How can you explain that an experience as burdensome as Alzheimer's care can turn into a Joy experience over time?

How can you explain that as the disease worsens the sense of compassion, caring, love, and Joy grow stronger?

Have you accepted the Spirit within you? Or, have you fully unleashed your Spirit?

Bob DeMarco
Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 312,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content the Alzheimer's Reading Room