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Myeloma, Party Of Two: Guidance From Estelle, The Caregiver
By: Tabitha Tow Burns; Published: June 6, 2017 @ 6:32 pm | Comments Disabled
It was February 1971, and Estelle Prather, wife of Edwin Prather, mother of two, and small business owner, was by Ed’s bedside in Houston, Texas. Earlier that year, they had left their business and children to others and made the five-hour trip to check Ed into the best cardiac hospital in the state. For weeks, a Houston hospital room was their home.
Cardiologists had found a previously undiagnosed heart murmur. With two leaves of his heart completely deteriorated and one leaf deformed, Ed was in bad shape. The good news was that he was in the care of groundbreaking researchers, who eventually performed a risky open-heart surgery on him to replace his deteriorated heart valves. One of the cardiac surgeons was a co-creator of the first artificial heart valve and a pioneer in his field, which surely must have given Ed and Estelle hope.
They were both young, barely 39 and 41, and very much in love. Ed was the center of Estelle’s world, and for her, no sacrifice was too great to get him the best care. Miraculously, Ed made it through the dangerous surgery, and he was making good progress before pneumonia set in. He died some days later in his Houston hospital room with Estelle by his side.
Edwin Prather was my grandfather, who died before I was ever born. And my grandmother, Estelle, was his caregiver. It’s Estelle’s example that I’d like to share with you today, and it’s my hope that it’s as helpful to other caregivers as it has been to me.
While I wasn’t there, the story of how my “Meme” dealt with this awful time in their lives has stuck with me since I first heard it as a girl, and it has guided my actions since I became a caregiver for my husband, Daniel.
Meme did all the things that good caregivers do. She was encouraging, supportive, and thoughtful. She put her patient’s needs before her own, and she was vigilant in seeking the best care for him and following the doctor’s orders. But there were more subtle lessons that I learned from her as well, and these have made all the difference with my own caregiving journey.
Meme believed in the curative power of gratitude. Even when there are setbacks or disappointing results, the best way to bring yourself out of those dark moments is with thankfulness for the things that are right in your life. There is always much to be thankful for, she would tell me, and it is in giving thanks that we can find the goodness and love that makes life worth living and celebrating.
Meme also understood that sometimes all you can do is be present and still. There are many times as a caregiver when you can’t do anything else to ease the burden on your loved one. For Ed, there were painful procedures, dangerous treatments, and the days were underlined with a gravity that nothing could make go away. In these moments, Meme knew that it was enough to just be there with him…silent, holding his hand.
After Ed passed away, life moved on and Meme knew that she had to move with it. She saw her children married and grandchildren born. She carried on the family business as a woman in a male-dominated industry. She always exuded a dignified equanimity and grace, which to me belied her sadness all the more.
During this time, she learned what must have been her toughest lesson - that even in grief there can be peace, because love endures forever. One day we were speaking about Ed, and she explained to me that while the sadness never really goes away, eventually the longing is replaced by the happy memories that provide a comfort in their own way.
While I pray for a different outcome, I can’t help but think of Meme’s caregiving journey in parallel with mine. I feel as though she has given me a template from which to cope and carry on. Caught unaware by illness in the prime of their young lives, Meme and Ed found themselves seeking refuge in Houston, hoping for a cure that would save Ed’s life. Meme had to suppress her own fears to be a round the clock caregiver for him. Throughout everything, Meme reassured Ed that it would be okay. She talked with his doctors, asked questions, and sought out the best care for him. She never left his side, and she ran their family business from the hospital so that the family’s income would be assured. Despite inordinate exhaustion and worry, she demonstrated great strength and an all-consuming love for her patient and husband.
I sit here pondering these things as I hold my grandmother’s hand. I’ve flown home from Houston at the last minute to see her. My family have called in hospice care for her as she grows weaker with each passing day. She is almost 89 now, and she has loved and lost much in her life.
She has taught me a lot about what it means to be a lady and a wife, but most of all, she has taught me about being a caregiver.
Postscript:
My grandmother, Estelle Prather Jobe, passed away on May 16th. My grandmother was a strong and complicated woman cut from a cloth rarely seen today. She was a Southern lady in the most gracious and beautiful sense of the word. She taught me how to set a table, work hard, care for others, and carry myself at a ladies' bridal shower. She taught me to appreciate the refinements of life without being trapped by them, and she showed me how to treasure the most important thing in the world – my husband. Most of all, she taught me how to be a caregiver – a lesson she learned while she herself was a young woman.
When she talked about her husband, Ed, she did so with a quiet longing that spoke to their great love and her grief in his absence. She loved him deeply, and after he passed, she dedicated herself to the business that they started together as a way of keeping him close. Meme never missed a visitor at church, and she cared for the sweet ladies from her Sunday School class until she could no longer drive or attend church herself. She believed in service and kindness to all, and she believed in me, always offering me the encouragement I needed to persevere in the ways that she would have me go. I loved her much. She was one of my greatest influences, and I will miss her terribly. My grandmother was a legend, a matriarch, and a tireless caregiver, and I will spend the rest of my life trying to live up to the best of what she offered.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here [1].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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