Imagine waking up each day next to the person you love the most, just like you have for more than 50 years. You still hold hands, still sip coffee together in bed, and still laugh at the smallest, most mundane things. But now your hands do more than hold. They lift, support, wash, and carry the weight of a relentless illness that does not pause, does not wait.
This is the life Diane lives as the caregiver for her husband, Bill, who was diagnosed with bulbar ALS in 2019. It started with Bill’s voice, a change in tone that gradually morphed into a new journey neither of them expected, but both have accepted with grace and fortitude.
Finding a New Rhythm in ALS Caregiving
Since that day, life has reshaped itself around routines most of us couldn’t imagine. Mornings begin with medications, breathing treatments, and meticulous attention to the intricacies of daily hygiene. Diane’s hands have become extensions of strength and now transfer Bill from the bed to the commode, from the commode to the chair, and from the chair into the van. The once simple act of getting out the door that used to take just a couple of minutes now regularly takes almost and hour of nurturing patience and a lot strategic maneuvering.
Despite speech and mobility challenges, Bill continues to demonstrate strength and perseverance. He can still feed himself without assistance, and while his words can often be unintelligible, Diane has learned that with slower speech and patience, she has no trouble understanding her husbands new way of communication. But nothing can replace the voice that once told jokes and lit up a room. Of all the things ALS has taken from him such as playing golf, tennis and skiing, losing his voice is what bothers him the most. Yet, Bill continues to smile. He laughs, plays games on his iPad and listens to music and comedians. He finds joy where he can find it, and that joy spreads everywhere.
“The best gift I ever got Bill was an iPad,” said Diane. “He uses it to talk, play games, laugh. It helps him come back to himself.”
A Marriage Built on Devotion and Determination
Their love story began when they were teenagers at 15. They married at 20, and they will celebrate their 53rd wedding anniversary this May. They raised two sons together and have five grandchildren. Love is in every inch of the walls of their home, even when the love echoes up and down stair glides and ceiling lifts, even when the days feel long and the nights restless.
In their condo on the second floor, Diane has built a sanctuary. She installed two Hoyer lifts; one upstairs and one downstairs, so she could get Bill in and out of their wheelchair accessible van. When the wheelchair lift wouldn’t work, she thought of something else and made it work. Adaptation has become her superpower.
But caregiving doesn’t stop for errands, chores, or the mental burden of caregiving, and Diane does it all: laundry, groceries, meals, bills. Her breaks are few, so she treasures her “stress therapy” when she can and enjoys decorative painting, music, and Hallmark movies.
“I certainly do have sadness and frustration,” she explains, “but I keep it all to a minimum in front of him.”
Support for Caregivers Through Let Hope Grow
Their story is not one of tragedy but of tenderness, not of endings but of enduring. They don’t live in worry about what the future may or may not bring. They have learned how to appreciate the moment, and how beautiful it can be when the moment is surrounded by love and family.
At Let Hope Grow, we believe in those moments. We believe in families like Diane and Bill. When ALS takes independence, we give comfort. When caregiving drags you down, we help you lift the weight. Whether it’s respite care, a mobility aid or the simple gift of a day that is manageable, our mission is to show compassion and provide support.
If Diane’s story resonates, we suggest exploring the rest our website for a plethora of caregiver resources, and consider donating to support our mission so families like Diane and Bill’s don’t have to do this alone.
You can also access other real stories and experiences by those impacted by ALS in our caregivers blog, and stay connected on TikTok, Instagram or Facebook to see how your support makes a direct impact.
Diane and Bills life together has changed tremendously since diagnosis day. But in Diane’s words, they make the best of what they have been given, and take it one day at a time.