Apr 24, 2017

Can we turn the crisis of dementia care into something good?

One of the last crises we may face in our lives is caring for a loved one who has been diagnosed with dementia.

One of the last crises we may face in our lives is caring for a loved one who has been diagnosed with dementia.

Winston Churchill famously said, “Never let a good crisis go to waste.”

These words ring especially true when we are older and can look back on our lives and see the patterns of joy and tragedy, celebration and crisis that make up the warp and woof of a long life.

By Tom and Karen Brenner

One of the last crises we may face in our lives is caring for a loved one who has been diagnosed with dementia. 

But how can we call this situation, fraught with the terror, exhaustion and depression that often accompanies a diagnosis of dementia, a ‘good crisis?’

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Can we put aside our own feelings of abandonment, hurt and anger and try to understand what is happening to the people we love? Can we, in fact, find the good in this crisis?

How can there be any good in a situation where a mother doesn’t seem to remember her own children, a husband thinks his wife is a stranger?

If someone cannot remember their own life, then who are they? And, more to the point, if they no longer remember us then who are we?

Are we still a husband, wife, mother, father, brother, sister, friend? So many ramifications, so many questions, so many unknowns. But, the central question in this crisis of dementia is this:

Can a person still be who they are and not remember who they were?

We fervently believe that people living with dementia are still the people they always were.

Should a person be lost to us because they don’t remember their wedding day or the job they held for thirty years? Is there some other handle we can find to grasp, some way that we can have a relationship with someone who doesn’t seem to know us?

Can we turn the crisis of dementia into something good?

There is no way to stop the heartbreak and loneliness of dementia, but there is a way to alleviate and mitigate the pain of this journey.

We can begin by consciously changing our expectations.

We need to train ourselves to look for the small moment of recognition, the fleeting smile, the gentle squeeze of a hand, the tentative laugh, the brief remembered moment. We must learn to live our lives only in this moment. This is a very hard thing to do.

We have spent the majority of our lives invested in the future, making choices that will provide for a better day, sacrificing the immediate pleasure for the long term goal.

This sort of discipline has been ingrained in us, this is how we’ve been able to complete and accomplish our set goals in life. And now that we are on this dementia journey we have to turn all of that experience on its head, we have to make ourselves think only of this moment, this day, this night.

It is very like driving through a dense fog where we can only see as far as the fog lights and have no idea what lies ahead on the murky road before us. This dementia journey is one we must travel by faith and not by sight.

Living with dementia may be the last, greatest crisis we face. 

It may not seem a world shattering crisis to others, but in our own little universe, it can shake the very foundations of our lives. 

Can we find the good in this last, greatest crisis of our lives? 

We can - if we believe - that learning how to become a caregiver, how to truly care for another’s well-being (emotionally, physically and spiritually) is a giant step forward in the evolution of the human soul.

Dementia is a crisis that shows us the heroic nature of caregiving.

When we understand the beauty and the dignity of caregiving, we can begin to see that caring for another person is a gift that has been given to us.

Through the exhaustion and the frustration and the tears, we still remember that the act of caring deeply for another can bring forth the very best in us.

This caregiving work illuminates not only our own lives and the life of the person for whom we care, this work lights the way for all who are trying to find their way through the world of dementia.

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Just as Winston Churchill led his people through the crisis of the dark days of war and into the light of peace, we can learn to look for the light in the caregiving journey, the peace that comes from knowing that we tried our very best in this caregiving moment, in this, our finest hour.

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Tom and Karen Brenner are Montessori Gerontologists, researchers, consultants, trainers and writers dedicated to working for culture change in the field of aging. They are authors of You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. This book earned the Alzheimer's Reading Room seal of approval.

The Alzheimer's Reading Room contains more than 5,000 articles and has been published daily since July, 2009.

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*** Empathy the ability to understand and share the feelings of another.

*** Compassion a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate their suffering.

*** Purpose the reason for which something is done or for which something exists. Having as one's intention or objective.

*** Happiness is a mental or emotional state of well being defined by positive emotions ranging from contentment to joy. Happy mental states also reflect judgement by a person about their overall well being.

*** Joy is a feeling of great pleasure and happiness. A heightened feeling of happiness.

*** Crisis a time of intense difficulty or trouble.