The PRESS BOX
By Maria Daddino
girl,” I told myself, “you’ve been doing this for 15 years.”
on my way to see my mom, but I knew that when I got there she would
not recognize me ...
dining room in Southampton’s new nursing home was empty except for a
few patients, each alone at a table, staring into space. My
97-year-old mother was there, too—in her private Alzheimer’s world,
being kept alive by modern medicine.
man broke my heart. He held a big stuffed dog close to his heart,
tenderly stroking its matted “fur.” Like me, I thought, he must have
is the last of four whom I have helped on their final journeys, and
from each of those heartbreaking treks I have learned something. But
it seems that the more I know, the more questions that I have.
Listening to the rhetoric and heated debates about end-of-life
counseling, I cannot help but wonder: Have those arguing ever been
caregivers? Have they ever watched their loved ones slowly fade
away? Have they ever had to make devastating life-and-death
loved my aunt and uncle deeply, and words cannot adequately express
the feelings that came over me when they entrusted their lives to
me. I was their “daughter” and their sole caregiver for many years,
and when I became their health care proxy I did not realize the
awesome responsibilities I would face.
Watching Uncle Johnny deteriorate from a big, strapping man to a
shell of what he once was will forever remain one of my most painful
memories. Adamant about not allowing feeding tubes, he made me
promise that when he could not enjoy a good steak dinner, I would
let him go. So listening to the nursing home nurse scream at me that
“No patient on her watch will starve to death!” was something that
still haunts me in devastating nightmares.
years later, I was awakened at 1 a.m. by a very young nurse,
pleading, “If you love your aunt so much, how can you starve her to
death? You have to put in a temporary feeding tube!”
Because it was described as “temporary,” I gave in.
Several days later, strong in my belief that the temporary feeding
tube did nothing to help my aunt and feeling guilty for not
following her directives, I asked for it to be removed. My aunt was
now in a nursing home, and I learned a very painful lesson: that
what went in so easily at the hospital could not come out as easily
in the nursing home.
I sat alone before an intimidating panel of 15 professionals, each
asking me how I could possibly know what my aunt would want, she
quietly passed away. It was so like her. She never wanted me to be
years later, I brought my husband home to die peacefully and with
dignity under hospice care. He was a lifelong, non-filtered Camels
smoker whose only wish as he lay dying of emphysema was for one last
cigarette—an unfathomable wish, and a testament to the power of
on, when I went through the enormous supply of medications I was
given at his discharge from the nursing home, I truly had to
question whether all of them were really necessary. At what point do
we say, “What does it matter if you live a month or two more, if
there is no quality of life?”
believe that while every breath of life is sacred, quality of life
is paramount. For me, once I can no longer recognize the sweet faces
of my precious grandchildren, smell the fragrance of a summer rose,
enjoy the beautiful sounds of the birds or the sight of brightly
colored butterflies, my life, as I know it, will be over.
want heartbreak to cloud my sons’ eyes when I can no longer
recognize them. I
don’t want them to feel the anxiety, the guilt and the sadness that
I felt as I made heart-wrenching end-of-life choices for those I
loved. I don’t want my sons to have the horrible nightmares that I
remain hopeful that my sons will have more compassionate choices.
Maria Daddino writes the “From Fourth Neck” column for The
Southampton Press Western Edition.