When my father passed away in 2006 from an aggressive form of cancer, the end came relatively quickly and peacefully. He drew his last breath surrounded by family while I held his hand. Later, a friend comforted me by saying, “The only thing harder than losing someone you love is watching them suffer.” I didn’t yet know how devastatingly true that is.
My mother Barbara Donalds was a pillar of strength and courage after my dad died: giving the toast at my wedding 12 weeks later that he was supposed to give, working full time as a director of music at a local Catholic church and continuing to be an amazing mother to her six children and grandmother to 10 grandchildren. My entire life, she had always been very outgoing, the life of the party — as a child, I hated going grocery shopping with my mother because we couldn’t walk an aisle without her stopping to talk with at least one person. The various choirs she directed adored her. She would host baby and wedding showers for members and hosted a Christmas party every year that was quite the raucous time.
In the fall of 2008, she started slurring her words. A neighbor said, “Barbara, you sound like you’re drunk.” My siblings and I started noticing other things shortly thereafter: her gait became unsteady, she tripped and fell and she was laughing at strange moments. We thought she had had a stroke. Nobody in our family knew anything about ALS.
We got the diagnosis in February 2009. As a social worker, I quickly got us in a support group, which we attended every week. But Mom’s condition deteriorated at such an astonishing rate that she lost her ability to speak within a few weeks and had to have a feeding tube inserted in her stomach because of the risk of choking on food. By Mother’s Day of that year, I broke down on my way home to my own new baby, thinking, “This is my first Mother’s Day and Mom’s last.” One of the last things she wrote in her own hand, shortly after she lost her beautiful penmanship, was “Would you do my eulogy?”
Through research, we learned that there were five indicators for a quick progression of the disease, and my mother had all five. She took comfort in that; as she told me through her speech generating device, she hoped the end came quickly. She wanted the same kind of peaceful end my father had experienced, to be in control, and to remain in her own home as long as possible.
In early September, my mother’s trusted caregiver took a vacation and we decided to move Mom into a residential hospice for a short-term stay. It was only supposed to be until her caregiver returned, but within a day, we realized that Mom probably wouldn’t be returning home. The hospice workers outlined our options, letting us know that if she decided not to take any more life-sustaining nutrition, they would support her and us in that process. By this point, Mom could only blink yes or no. I presented the options to her. “Do you want to stop nourishment and hydration through your feeding tube knowing it will hasten the end?” She blinked twice for yes. “Are you sure?” I asked. She blinked twice again.
I don’t think any of us, including my mom, imagined she would live for two and a half unbearable weeks this way. In a span of just seven months ALS had robbed her of control of every voluntary movement, ultimately even the ability to blink, yet her mind was perfectly intact. Her limbs were black from lack of circulation, she was groaning, and it was impossible to know what was causing her pain and distress because there was no way for her to communicate.
The night of September 17, 2009, was my brother’s turn on the cot by her bed. When he woke the morning of the 18th, she was gone. No one held her hand as she had done for us so many times. 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.
As a mother myself, I often feel like I need her now more than ever. I look back on how she raised me and my siblings and I so appreciate how she didn’t let her own fears shape our experiences. For instance, she had a fear of dogs, but she purposefully got one when we were little because she didn’t want to transmit her own fears to us. Later, when I was a diver and my older brother had become a fighter pilot — my mom also had a fear of heights — she joked, “Maybe I did that too well! You’re all such daredevils.” She was always so wonderful about empowering us to follow our own paths and supporting us along the way. I believe she would take the same approach towards end-of-life options: while she might not have exercised the option of medical aid in dying if it had been available to her, I can say with absolute certainty she would want others to have the right to choose. We each deserve, if we choose, to have our final moments surrounded not by pain and fear but by love and comfort.