Jennifer Barahona and her mother, Barbara Donald, who died of ALS in 2009. (Contributed photo)

When my father died peacefully and relatively quickly from an aggressive form of cancer in 2006, I took comfort in the words someone said to me: “The only thing harder than losing someone you love is watching them suffer.”

Little did I know how right that person was – until my mom died from ALS three years later, in 2009.

My incredible mother had cared, protected and loved me every moment of my life, and as her youngest child and her health care proxy I wanted to do the same for her in her final months, weeks and days. And I did that as best I could up until the last few weeks of her life.

Together, in the first days of September we made the decision to stop nourishment and hydration through her feeding tube to hasten the inevitable. It was the last act she could consent to. In just seven months, ALS had robbed her of control of every voluntary movement, including the ability to blink yes-or-no responses, yet her mind was perfectly intact.

To this day, I am haunted by her pleading eyes, her groans, her black limbs from lack of circulation, and the inability of any person, medical or otherwise, to know what was causing her pain and distress. The only thing she had asked was that she remain lucid until the end.

None of us, least of all my mother when she made the decision, imagined that we had more than a few days and we gathered family near and far to be with her. To our horror, she lived this way for two and a half unbearable weeks. We had family members with her 24 hours a day, expecting each moment to be her last.

The night of Sept. 17, 2009, was my brother’s turn on the cot by her bed. When he woke the next morning, she was gone. No one held her hand as she had done to the six of us children through every difficult moment of our lives. No one was there to whisper loving words into her ear in her final moments. She died alone in a strange bed after unimaginable suffering.

My mother was the director of music in her Catholic church for over 30 years and put her heart, soul, and time into the weekly liturgies, but I know she would have wanted the option of medical aid in dying.

Her nightmare experience prompted me to become an advocate for medical aid-in-dying legislation that originally was introduced 27 years ago in 1994. I have testified five times since 2014 on this issue, most recently last month.

Every time I testify, lawmakers express sympathy for dying people’s suffering, but they often say they’re “not comfortable” with the issue. Meanwhile, year after year of debate on this compassionate legislation only results in more Connecticut residents dying with needless suffering (Orange resident Mike Mizzone, Stamford resident Minnie Wilkov, Westport resident David MurrayWeston resident Pam Parsons) and their loved ones testifying about helplessly watching it. None of us are “comfortable” discussing this issue, but we feel a duty to do everything in our power to ensure other terminally ill Nutmeggers don’t suffer needlessly at life’s inevitable end. 

I respect that some people strongly oppose HB 6425, but they should not be able to dictate the end-of-life care decisions of the 2-1 majority of state residents who support it.  

a green button that says support and red button that says oppose

I’m grateful that a bipartisan 24-9 majority of Public Health Committee members put aside their discomfort and approved the bill.

Now I urge lawmakers in the House and Senate to put aside their discomfort and provide this peaceful dying option to their terminally ill constituents who desperately need it.  

Jennifer Barahona, M.S.W., lives in Fairfield.

The views, opinions, positions, or strategies expressed by the author are theirs alone, and do not necessarily reflect the views, opinions, or positions of