FROM THE EDITOR'S PEN /
A Truly Appropriate Anniversary Present /
Just in time to celebrate the_?_th anniversary of our
Fearless Caregiver Manifesto, comes an
opportunity to highlight two of the ten
Manifesto’s 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 mom’s 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 Marisol’s 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 mother’s
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
Mary’s words the story of a caregiver who was
involved, caring, professional and frankly
fearless. I think Mary’s attitude and
professionalism helped to create an environment
in which the professionals felt as respected and
as welcome as Marisol’s smile made them feel.
But in true Fearless Caregiver style, she did
not attribute their dedication to her efforts as
much as to her mother’s 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 one’s 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
I will fearlessly learn all I can about my loved
one’s 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, “Go
gently into that good night, knowing that you
leave a wealth of love behind.”
How are you an advocate for your loved one?