The PRESS BOX

Choices

By Maria Daddino
 

I was on my way to see my mom, but I knew that when I got there she would not recognize me ...

The 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.

One 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 loved animals.

My mom 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 decisions?

I 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.

A few 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.

And as 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 upset.

Four 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 tobacco addiction.

Later 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?”

I 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.

I don’t 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 had.

I remain hopeful that my sons will have more compassionate choices.