Caring for a loved one with ALS is a challenging task that requires time, energy and emotional resilience, and caregivers give so much of themselves — time and time again. Even after a loved one passes away, caregivers continue to give in many ways. And for everything that ALS takes, love is the one thing it cannot. Follow along in this three-part series as we share the story of one caregiver who has championed the ALS cause after the loss of her husband, Alan.
Even as a young toddler, Harvey reminds his mom, Jess, so much of his dad. It’s one of the ways Alan Gustafson lives on. “Alan is very present in our life. He’s part of us,” says Jess. “His art reminds us of him every day. But there’s also an emotional and spiritual connection with him that I continue to nurture.”
Around the time Harvey was born, the young family was stunned to learn that Alan Gustafson had ALS. He was only 38 years old and delighting in the thought of becoming a dad for the first time. He was also a celebrated welder and metal fabricator known in Ottawa for his public installations. Losing the use of his body meant losing the ability to express himself through his craft which for Alan was a vital part of his identity. As the disease progressed, he refused to give in without exploring other outlets for artistic expression that would continue to feed his creative impulse. At the suggestion of an artist friend, he configured a system to allow him to paint. With the help of an assistant and an adapted wheelchair fitted with a long bar to hold the paint, Alan created large canvases on the floor of his workshop.
Sometimes, ALS progresses quite slowly, but in 80% of cases, people are given a window of two to five years. Alan’s condition deteriorated at an alarming rate. It was only a matter of weeks following his diagnosis before he was confined to a wheelchair without the use of his hands or arms. Within less than a year and half, ALS had taken Alan’s life. Jess remembers when “every day brought a new symptom. It was impossible for us just to catch our breath,” she says. It was harrowing to see this “gentle giant” lose all his physical strength. Alan was so strong he once brought a washing machine into the house and carried it down the stairs by himself. The loss of independence was very difficult on both Jess and Alan.
“He could make anything happen and suddenly we were in a situation where we were both completely at the mercy of the people around us to help,” recalls Jess.
Throughout the time she cared for Alan, Jess reacted against a feeling of helplessness accepting his ALS
diagnosis by giving of herself to the many needs of the new reality they were facing as a family: looking after a new baby and her husband at the same time, attending to Alan’s personal care including feeding and bathing him, coordinating extra help and medical appointments, overseeing his pain management at home, and acting as his interpreter when his speech became difficult for others to decipher.
Now, a year after Alan’s death, Jess is once again giving of herself – sharing her story to raise awareness and help create a brighter future for other families who will face an ALS diagnosis. She is outspoken and passionate about the fact that ALS must be stopped. “I don’t think we should accept that this level of suffering is something that can go on. It feels like torture to watch helplessly as everything is peeled away,” she argues. “ALS is so insidious. People are forever changed by their exposure to this disease. It’s on us, the survivors, to champion and advocate and raise awareness.”
Although there are relatively few Canadians diagnosed with ALS in comparison to other potentially fatal diseases that garner much greater financial support and exposure, Jess makes the point that the ripple effect on families and communities is huge, and that ALS can strike anyone at any time. She sees an enormous amount of work that needs to be done to support families living with ALS and to prepare for a future without ALS. In her words, “you can’t sugar-coat it.” ALS must be stopped.