A Daughter’s Gratitude for an ALS Caregiver
In early August 2021, my dad received the devastating diagnosis of ALS, just weeks before his 80th birthday. Our family celebrated that milestone, but the joy was tinged with uncertainty—we didn’t know how many more birthdays we’d have together.
As the oldest and only daughter, I took on the responsibility of attending clinic appointments, managing medications, and navigating an avalanche of emotions, all while balancing a demanding full-time job. Watching my dad transition from walking with a cane to needing a walker, and eventually being confined to a wheelchair, was a cruel reminder of how relentless ALS can be. Caregiving for someone with ALS is a journey of profound challenges and deep love, a role you step into out of necessity but embrace with your heart.
The Early Days of ALS Caregiving
My brothers and I leaned on each other for strength. Dwayne, my eldest brother, lived in Texas, but his distance didn’t keep him from being present in his own way. He called Dad every day—sometimes multiple times—and he and his wife, Donna, offered to come to Pennsylvania to help. Though their offer was heartfelt, I initially resisted. The thought of asking them to uproot their lives, especially with Donna leaving her job, felt like too much to ask.
For a time, we managed. Dad had a nurse who visited regularly and a caretaker who came in to help with bathing and light chores. However, not every caregiver is a perfect fit. Ours was unreliable—often glued to her phone or skipping visits altogether. Despite these challenges, Dad wasn’t ready to have someone else step in. In caregiving, you quickly learn that the journey is not just about the family’s needs but also about the patient’s readiness to accept help.
The Turning Point
On December 12, 2022, everything changed. Dad’s health took a dramatic turn, leaving us fearing the end was near. His VA nurse worked swiftly, coordinating oxygen, a nebulizer, and a lift to help him in and out of bed. Hospice joined our team, and nurses began visiting weekly—or more often, as needed.
Christmas came and went in a blur. Dad was mostly bedridden and slept through much of the holiday. Every day, I stopped by after work to help with dinner, clean him up, and prepare him for the night. Then, one day in early January, I broke. When I stopped by his house that evening, Dad was sleeping. Not wanting to wake him, I handled a few chores and left. Later that night, he called. “I need to be changed,” he said softly. “It hasn’t been done all day.”
As I drove back to his house in my pajamas, I cried. I was angry—angry at the situation, angry that I couldn’t be there 24/7, angry that this disease had taken so much from us. That night, I called Dwayne. “If you’re still willing,” I said through tears, “we need Donna here. Sooner rather than later.” The next morning, I spoke with Dad. After a difficult conversation, he finally agreed. By the weekend, Dwayne and Donna arrived in Pennsylvania.
Donna’s Lifeline of Compassion
Donna’s presence was nothing short of a miracle. She quickly became the heart of Dad’s care team, attending to not only his needs but also his wants—coffee in the morning, perfectly cut food, and even his favorite milkshakes. Her compassion transformed caregiving into something that felt less like a chore and more like a testament to love.
She journaled everything—Dad’s moods, medications, and the ups and downs of his days. Donna spent hours talking with Dad about his life, his grandchildren, and even the inevitable end he knew was coming. Her calm presence was an anchor for all of us, especially during moments of anxiety when she would reassure him with humor and gentle care.
Of course, caregiving wasn’t without its challenges. ALS often brings frustration and emotional outbursts. I’ll never forget the day Dad, upset by his inability to adjust his wheelchair, threw an Allen wrench across the room. Donna caught his arm as he went to throw another. “We don’t throw things when we’re angry,” she said firmly but kindly. She reminded him of his self-worth even in his most vulnerable moments.
Her compassion extended to my mom, encouraging her to spend quiet moments with Dad. She even set up a TV tray in their bedroom so they could share meals together.
Donna stayed by Dad’s side until the very end, offering him comfort, respect, and unconditional love. She made it possible for me, my mom, and my brothers to simply be there, not as caregivers but as family.
When he passed, she handled everything with grace, ensuring his dignity was preserved.
Honoring ALS Caregivers During National Caregivers Month
Caregivers are the quiet heroes who bear the weight of others’ pain while offering love, patience, and strength.
Caregivers like Donna exemplify the best of humanity. During National Caregivers Month, we honor their sacrifices and the love they bring to those facing ALS. To all the caregivers walking this path, we see you. Your strength and dedication do not go unnoticed. You are the lifeline of hope during life’s hardest moments.
Thank you Donna Portner, I’ll never forget the love you gave my dad. I love you Sis.
How You Can Support ALS Caregivers
At Let Hope Grow, we are committed to providing resources and support for ALS families and caregivers. Whether you’re looking to make a difference or find assistance, here are some ways to get involved:
- Donate to help families like ours receive the care they need.
- Become a Sponsor and help sustain our mission of compassion and support.
- Explore vital resources to support your ALS journey:
- Learn about available assistance on our Financial Assistance page.
- Discover tips for adapting daily life on our Lifestyle Modifications page.
- Plan meaningful experiences with loved ones using our Travel Assistance page.
- If you’re newly navigating an ALS diagnosis, visit our Newly Diagnosed page.
Together, we can honor caregivers and ensure ALS families continue to find hope in the hardest moments.
About the Author
Tammy Portner-Smith is a dedicated wife, mother, grandmother, and great-grandmother. She serves as the General Manager of the Bird-in-Hand Family Inn and has been an active board member of Let Hope Grow since her father’s ALS diagnosis. Balancing her full-time career with caregiving for her husband, who has MS, Tammy is passionate about supporting families navigating the challenges of ALS. Her involvement with Let Hope Grow stems from a deep desire to help others live life to the fullest, even in the face of adversity.