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Thank you to the Caregiver

My mother was a nurse –– a white-uniform, white-stockings, white-leather-duty-shoes, white-cap-with-black-band, and navy-blue-cape-with-red-lining nurse.

She loved to work in Emergency, or “Emerg” as she called it. But after a gastric hemorrhage when I was five, she moved into nursing education at the same hospital where she’d received her training, before eventually finishing her career as an Associate Director at a children’s hospital.

That incredibly brief outline of a vocation and career that touched hundreds of nursing students and thousands of patients and families does her no justice. Because if ever a person was born to be a nurse, it was my mother (and my friend Hayes –– Ann Marie Reid, nee Hayes –– but that’s another story).

Ask anyone… neighbors, colleagues, friends, friends of friends, relatives of friends of friends, sisters, brothers, nieces, nephews, the students who called her Mom, patients, patients’ families… she was the person you turned to. She was the person whose voice brought hope, whose words brought comfort and whose smile brought peace. She was the person who helped make sense out of chaos. And she never ever settled for anything less than the best in terms of the medical attention for the people under her care.

When my father’s dementia had reached the stage where he could no longer be left alone, she decided to retire early. My heart was filled with sadness, because I knew how much she loved her work and what she was giving up. I was also deeply relieved and grateful, because I knew she would care for my father as no one else would.

Mary Louise Barron (nee Morry) on the occasion of her Nursing Class 50th Year Reunion.

What I wasn’t prepared for, could not have imagined at the time, was the toll his disease would take on her… the tragedy of watching the man she loved, the person she depended on more than anyone else in the world, disappear before her eyes.

The disease that ravaged him ravaged her as well, and her struggles were heartbreaking. I wrote of this in A Daughter’s Gift… indeed, the story shares much about the impact of the disease on those who love the afflicted person. I was so worried about her reaction that while the first, coil-bound manuscript was on its way to her (I lived in Alberta and she in Newfoundland at the time), I took my own copy and marked all the pages I thought might upset or hurt her –– the places where I had shared realities I thought she might not appreciate me sharing  –– so I could try to explain each and every one.

I didn’t want to hurt her, or upset her. I didn’t want to damage our relationship, or cause her pain. But I didn’t know how to tell the story without her, and the impact Alzheimer’s had on her.

I don’t remember everything she said when she called after she had read that early copy, but the most important words stuck in my head:

I was really like that, wasn’t I?

Yes, I answered, uncertain what her tone meant.

Don’t change a word, she told me, strength, determination, even anger in her voice. Don’t change a single word. People need to know that’s what the disease does to you… People need to know…

Dick, Mary and Kenneth, early in the Alzheimer’s journey.

If you wonder why I am thinking of this today, it’s because today, January 25, 2013, would have been my parents’ 60th anniversary.

And so I remember my father, and the incredibly strong woman who was alone with him in their home, early on the morning of October 30, 1994, when he took his last breath.

I remember the night, less than a week before that, when in an extremely rare moment of lucidity –– the last such moment he would have –– my dad opened his eyes after being helped to bed. He looked up at her with clarity and total awareness, and a love so deep it brings tears to my eyes even now. And he said to her the last lucid words he would speak: I love you.

I remember all she did for my father… the endless days and sleepless nights. I remember the toll it took on her… the intense grief and despair she hid from all but a handful of people… the physical and mental exhaustion… the desperate loneliness that no one could ever ease.

And I celebrate her. For her courage, her determination, her strength, and her love. I celebrate them both.

Alzheimer’s Awareness Month for 2013 will soon come to an end, but before the calendar slips into February, it is important to remember those family members who provide primary care and support. To say their task is not an easy one is an understatement of massive proportions. It is more difficult than often they let us know. They need help and support even when they don’t realize it, even when they can’t or won’t ask for it, even when they push us away. And most of all, they need and deserve our gratitude and love.

Happy Anniversary mom and dad. And thank you.