Women of Courage Facing Early Onset Dementia

The sports world was shocked by news that 59-year old Coach Pat Summitt, Tennessee Women’s basketball coach, has an Alzheimer’s type of dementia. The news wasn’t uncovered through investigative reporting—the coach made the announcement herself.

Coach Summitt has met her Alzheimer’s challenge head on and fighting back. She knows this disease is not a game and nothing short of a miracle will allow her to win. Still, she has faced the disease with courage and announced that she will continue to coach as long as she can.

With a staff of veteran coaches and a supportive administration, Coach Summitt may be in the game for a long time. Remaining active and involved is the coach’s way of focusing on what she can do rather than what she can’t.

While the coach made national news, on a more personal level I heard from a friend of mine has always shown remarkable courage and faith. She developed frontotemporal dementia (FTD) while she was in her 30s.

After our initial polite greetings, I asked her how things were going.

“Taking it one day at a time,” she wrote on Facebook.

She went on to tell me that she and her husband had separated. This was sad and surprising news because he had always been so supportive and loving toward her. She goes on to tell me that her teenage son feels responsible for making sure she is all right.

Times are tough for them, and she had tried to find a part-time job to give her something to do and to supplement their income. She had already been fired from two jobs. She couldn’t remember all the steps to putting hamburgers together at the fast food place. She worked as a night clerk at a hotel but couldn’t keep anything straight so she was fired from that job too. She has an interview for a third job on Monday.

My friend had her life turned upside down when she was diagnosed with FTD and now with her husband leaving, her world has flipped again. Unfortunately, rather than making the world right side up for her, it is even more out of kilter.

I think about how her husband must have felt to walk away from her. It would be easy to say what he did was unforgivable and let it go at that. But diseases like Alzheimer’s or FTD do not just affect the person with the disease. Relationships are collateral damage. I do not condone what he did, but I do understand how year after year of caregiving takes its toll. I’ve seen caregivers who sacrificed any semblance of a normal life for a decade or more, and some who sacrificed life itself and died before the person with dementia.

Even the best of us are only human. Loving caregivers do what they can for as long as they can. It takes determination and courage to hang in there day after day until the job is done. No one except a primary caregiver knows how hard that is, and I suspect that those caregivers would be the most adamant that my friend’s husband deserves to be eternally punished for his neglect. After all, he abandoned his wife in her time of need, and abdicated his responsibility to a teenager.

As for my friend, she faces the future with optimism and courage. For now, she will be satisfied with a part-time job. She has her faith and a son who loves her.

I don’t understand why life has dealt Pat Summitt and my friend these terrible blows, but I know they are women of courage, an inspiration, and an example for all of us.

Copyright © August 2011 L. S. Fisher
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