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FROM THE EDITOR'S PEN  / A Truly Appropriate Anniversary Present  /  Editorial List

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Gary Barg

A Truly Appropriate Anniversary Present

Just in time to celebrate the 15th anniversary of our Fearless Caregiver Manifesto, comes an opportunity to highlight two of the ten Manifestoís principles in one fell swoop.

Last week, I met a family sitting together in mourning for the imminent passing of their matriarch, as well as in celebration of their love for her.

Marisol is 89 years old and in her last days of living with ALS. She cannot speak anymore and utilizes a touch screen computer to share her thoughts with her family and professional caregivers. Yet, she still has a twinkling eye and an electric smile for all her visitors.

Her daughter Mary shared with me that that some of her momís more regular visitors were her past therapists and nursing aides, even though payment for their services had ended. Mary told me that it was their love for her mother that keeps them coming back to visit and they actually still help with her care. As Mary talked with me, unbeknownst to her, she exhibited all of the best traits of a loving, empowered and Fearless Caregiver.

Mary decided not to select one local hospice organization that she otherwise liked because they would not provide her mom with the technology that allowed Marisol to communicate her wishes to an ever-shrinking world. She mentioned that the doctor from the hospice they chose was by Marisolís side all morning and had, in fact, just left. His regular visits surprised the hospice staff, which never saw him visit a patient so often. As I listened to Mary, I did understand that her motherís welcoming attitude towards her healthcare professionals was one reason that she engendered such love and support, even after their contracts ended. But I also heard in Maryís words the story of a caregiver who was involved, caring, professional and frankly fearless. I think Maryís attitude and professionalism helped to create an environment in which the professionals felt as respected and as welcome as Marisolís smile made them feel. But in true Fearless Caregiver style, she did not attribute their dedication to her efforts as much as to her motherís attitude.

So, if you are wondering which two specific principals that this remarkable family exemplified, they are as follows:

I will fearlessly make my voice be heard with regard to my loved oneís care and be a strong ally to those professional caregivers committed to caring for my loved one and a fearless shield against those not committed to caring for my loved one.

I will fearlessly learn all I can about my loved oneís health care needs and become an integral member of his or her medical Care Team.

Thank you, Marisol. It is an honor to have shared these moments with you and your family. To inelegantly paraphrase Dylan Thomas, ďGo gently into that good night, knowing that you leave a wealth of love behind.Ē

How do you make your voice heard?

Gary Barg


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