Jul 11, 2016

The Act of Caring Deeply for Another Person

The Act of Caring Deeply for another person can bring forth the very best in all of us.

Caring for someone who is living with dementia helps to build a more caring world.
By Tom and Karen Brenner
Alzheimer's Reading Room

We were just living our lives when our world suddenly turned upside down, inside out.

We had always been a hard working couple; a gerontologist and a Montessori educator, who raised our children, paid our bills, helped our family and our neighbors and then, suddenly, we were a couple who were both out of work and battling cancer.

In the middle of all the bone chilling fear and despair, we decided to do a very strange thing: We decided to completely change direction, to combine our expertise and experience, to work together using the Montessori Method for positive dementia care.

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Here is how our journey in dementia care began.

Tom and Karen’s Story:

A couple stood just outside the door of the Scandinavian Home, arguing. The autumn leaves from the towering elms on the grounds of the nursing home swirled around their feet as the cold wind snatched their voices away.

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“I told you, Tom, I don’t want to go back today. I am afraid of some of those people. You know how much I hate scenes and last Saturday Bridget yelled at us and told us that nobody wanted us there. I just froze when she took off her slipper and started hitting that other woman on the head. You knew what to do, how to calm her down. I don’t know what I’m doing here. I’m just a Montessori teacher. You’re the gerontologist, you’re the specialist on aging, you’re the one who spent the last six years researching dementia. I’m not going in.”

“Come on, Karen, we’re in this thing together. We’ll learn how to do this as we go. We’re a great team, aren’t we? I mean, we’ve been married forever, we’ve raised great kids, so we can do this together, too.”

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She shook her head, near tears.

“Right, a great team. If we’re so great at this, how come Bridget hates us? Anyway, we argue all the time, we’re arguing now. What makes you think we can work together?”

He took her hand.
“Because we are meant to do this, because we beat cancer together, because I can’t do this without you.” 
He pushed open the door and pulled her in with him and with his lopsided smile whispered to her,
“Anyway, Bridget doesn’t hate us, Bridget hates you!”
That was the way we began our work in dementia care, learning from our mistakes, finding out what worked and trying to understand why it worked.

We have had the enormous good fortune of meeting people with dementia who were kind and patient and generous with us. We also met lots of ‘Bridgets’, people who were difficult, sometimes violent. We learned from these hard cases that if we didn’t give up on them, we could find a way to reach even them.

For us, success is measured in a smile, wide awake eyes, laughter, some sign, no matter how small, that we are helping people with dementia connect once again.

We have learned to be careful observers, to see the tiny step forward, the small improvement, the flash of joy. We know that we cannot cure the condition or bring back a fully functioning person, but we can experience a deep, if fleeting connection.

Caring for someone who is living with dementia may not seem world shattering to the care partners who are performing this exhausting and demanding task, but we have come to understand that every caring act helps to build a more caring world.

Learning how to become a care partner, how to truly care for another person’s well -being (emotionally, physically and spiritually) is a giant step forward in the evolution of the human soul.

That decision we made years ago, in the wake of illness and financial collapse, has given us a life rich in meaning and experience. We have met the most fascinating and wonderful people in this work. They have taught us so many important life lessons.

When we work with people who are living with dementia, everything falls away; there are no hidden agendas, no judgments about religion or politics or social status.

We are just there, in that moment, living that moment soul to soul. Out of the darkness, we turned toward the light. We have stumbled, we have lost our way, but we have never turned back. Through the exhaustion and the frustration and the tears, we must remember that

the act of caring deeply for another person can bring forth the very best in all of us.

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