Jul 20, 2016

Out of the Mouths of Babes, Etc.

There is another time in our lives when the help and support of others is needed: When we are caring for someone who is living with dementia.

By Tom and Karen Brenner
Alzheimer's Reading Room

Our five year old granddaughter, Ellie Kate, explained to us recently that she was no longer interested in princesses. Her reasoning caught our attention.

It seems that Ellie Kate has come to the conclusion that people, specifically girls, should be able to take care of themselves and not have to wait for some prince to come and rescue them.

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We really liked her logic and, as often happens when we listen to children, we realized that there was a lesson in Ellie Kate’s pronouncement.

We all learn at an early age, just as our granddaughter is learning, the importance of being self-sufficient, independent, strong and resilient. These are fine and noble attributes that serve us well through most of our lives.

There are times, though, when we have to lay aside the need to be tough and independent: The death of a loved one, natural disasters, the loss of a job, a serious illness. During these times, we have to swallow our pride and reach out to our families and our communities to help us weather the storms, the death, the illness, the job loss.

There is another time in our lives when the help and support of others is needed: When we are caring for someone who is living with dementia.

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We don’t think of caregiving as one of the earth shattering events that can knock our world sideways, but for those of us who live the dementia journey, we know only too well the cataclysmic, confusing and exhausting world we enter when we become a care partner.

There is no Red Cross, no United Way to support and care for those who are living with dementia but there is help and there is hope. And there is community.

One of the most vibrant and helpful of these communities is Alzheimer’s Reading Room.

Bob DeMarco’s journey through dementia world with his beloved mother, Dotty, was the foundation for the Alzheimer’s Reading Room community. Bob did a wise thing when he became the caregiver for Dotty; he opened up all of the windows and all of the doors so that Dotty could live as full a life as possible in her final years.

In opening up to the world, Bob reached out to other people who were trying to find their way through the sometimes dark and scary, wild and crazy, tender and joyful land that is dementia world.

The community that Bob and Dotty created is filled with people from all over the world, whose experiences and knowledge are shared out of the generosity and goodness of their collective hearts.

Alzheimer’s Reading Room is populated by heroes; people who get up every day to do it all over again, to care for loved ones, to treat patients, to look after residents.

This is a community of strong, dedicated, resilient people who have learned the importance of reaching out to families, friends, experts and fellow travelers for help, for strength, for hope and for understanding.

When we dedicate our lives (both professional and family caregivers) we take on the mantle of those who are special, those who are blessed. We are all princesses and princes, battling the dragons of dementia together.

And one more bit of wisdom from our granddaughter. Ellie Kate ended her recent pronouncement by saying,

“Even though I don’t like princesses anymore, I still like diamonds.”

Smart girl!

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"The Alzheimer's Reading Room is the one place on the Internet, and in the world, where those who are searching for information, encouragement and guidance can find the help they need from people who completely understand their questions and their journey".
- Tom and Karen Brenner, Montessori Gerontologists, Brenner Pathways