Friday, November 16, 2012

Jewels of Time


We must learn to see them as little gifts that flash brightly and leave just as suddenly as they come. If we can learn to enjoy this flash of connection, these little moments, we can have the people we love in our lives again, not, of course, as we used to have them in our lives, but still with us, one brief moment at a time.

By Tom and Karen Brenner
Alzheimer's Reading Room


Jewels of Time
It is often said of dementia that this condition robs people of their person hood; it takes away their memories and abilities, and so the reasoning goes that dementia destroys the person’s life.

We have met and worked with hundreds of people living with dementia and the families who love and care for them. There is so much pain and hurt that surrounds this dementia journey.

Wives often feel that if their husband no longer appears to recognize them or remember their name, then it means he no longer loves them, that they have lost the love of their life.

It is true, a spouse may not seem to know their loved one, a mother may seem not to remember her own children. Can we understand what is going on here? Can we put aside our own feelings of abandonment, hurt and anger and try to understand what is happening to the people we love?

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If someone cannot remember their own life, then who are they? Are they still our husband, our wife, our mother, father, friend? The question is: can a person still be who they are and not remember who they were? Are we a series of events, or do we have unique qualities that make us who we are?

After years of doing this work, we have found that people living with dementia are still the people they always were. But, how can that be, when they don’t seem to know their own families, when they don’t remember their own children’s names?

Is remembering all we are?

Is a person 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 hold onto, to have a relationship with someone who doesn’t seem to know us?

At this point in the dementia journey, we have to throw our egos under the bus. We have to be willing to meet the person we love exactly where they are in the dementia journey. If this means that they don’t seem to know us, then we have the privilege of introducing ourselves to them and letting them get to know us again.

This may seem a very lonely and heartbreaking act, to introduce ourselves to our mother or father or husband or wife as though we were strangers.

It is lonely and heartbreaking!

It is also compassionate, liberating and sometimes very funny. This re-introducing ourselves all the time gives us the opportunity to drop a lot of baggage that families tend to carry over the years. We get a new beginning every time we meet.

If we take the time to try and understand what is happening to the person we love, it will help us learn how to take this lack of recognition less personally. This may seem like a rather harsh or impossible statement, but we have seen that when family members begin to gather more knowledge about dementia and how it affects the mind, then with that understanding comes some measure of comfort.

As is often the case on the dementia journey, just when we think we have a handle on understanding, something wild and unexpected happens.

We may have worked hard to forget the word “remember,” when suddenly the person we love remembers us or some event from their lives. This may last only a few seconds, or a few minutes, but it is like the sunlight breaking through the clouds when it is happens. For a fleeting moment, we have the person we knew and loved with us again.

Then, heartbreakingly, it is gone; the light goes out, the cloud descends.

To keep the ones we love in our life, it is important to understand that these fleeting moments of recognition or remembrance are causes for celebration, not despair. Rather than constantly mourning the loss of the person we knew and loved, we must learn to appreciate these brief encounters, these moments of connection.

We must learn to see them as little gifts that flash brightly and leave just as suddenly as they come. If we can learn to enjoy this flash of connection, these little moments, we can have the people we love in our lives again, not, of course, as we used to have them in our lives, but still with us, one brief moment at a time.

These moments of recognition, of connection, are like little jewels that are strung on the necklace of time.

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Tom and Karen Brenner
Tom and Karen Brenner are Montessori Gerontologists, researchers, consultants, trainers and writers dedicated to working for culture change in the field of aging. Tom is a gerontologist and has specialized in creating and researching dementia specific training programs. Karen Brenner is a Montessori educator and has specialized in working with children who are deaf or communication disordered. They have been published in magazines and journals both in the US and internationally. Learn more about Tom and Karen at Brenner Pathways

Original content Bob DeMarco, the Alzheimer's Reading Room