Beth Robertson’s husband, Tim, lived courageously with ALS for 12 years. He was sustained by the loving presence of his wife, Beth, his three children, and a large network of family and friends. Beth says she would do it all over again for Tim, but she admits ALS is a terrible burden for everyone it touches.

Beth & Tim at their wedding
Beth & Tim at their wedding.

Looking back, Beth says Tim’s selflessness helped keep the family resilient and supportive with each other. “He let us continue to lead our lives. It helped that I kept my job teaching,” recalls Beth. “It was good for me and it helped Tim and I remain strong as a couple. I got frustrated when people called me a caregiver not his wife. I was his wife. We were husband and wife living with this thing and we just kept going.”

80% of people diagnosed with the disease will not live as long as Tim did. “ALS dominated every aspect of our lives. I can hardly remember what it was like before, but I remember every single moment when Tim was living with it. Every time he went into a little slump. Every time you’d see a decline. Where he sat on the back deck watching me garden when he couldn’t garden with me anymore.”

When Tim survived beyond the average two-to-five-year prognosis, Beth remembers imagining the possibility of more time with him. She hoped he might live a long life like Stephen Hawking, but she also harboured fears about how challenging it would be to live without hope of a treatment to stall or reverse Tim’s symptoms and how challenging symptom progression would be for the family.

Beth & Tim with their children.
Beth, Tim & family.

“There’s no blessing in this. It’s a tough journey,” admits Beth. “Even though we had more time and Tim was fortunate to see his children graduate from high school, it’s hard to give a positive final message that is honest.”

Today, she is hoping for greater investment in ALS research so that researchers can better understand why people have ALS and how treatments can halt the disease early in its tracks. That’s why Beth participated in the ALS Ice Bucket Challenge three times and why she hopes the momentum will continue. “One time, I dumped the bucket on Tim in his wheelchair and then on me. I was so focused on me that I didn’t realize Tim still had a pile of ice on his head. Poor Tim,” she says. “I felt so bad for him. He never complained though.”

Investing in research is a priority for Beth but she is also deeply concerned about the availability of direct support for families living with ALS. She says ALS Canada plays a critical role by providing equipment, education, and emotional support but as a donor-funded organization it can’t do everything. It’s time for the federal government to do more to relieve some of the heavy financial burden on families living with ALS. “We were lucky to be able to afford things like retrofitting a van,” says Beth. “But what about the people who don’t have the money? I can’t imagine what that’s like.”

She says it’s also time for provincial governments to step up. In long term care homes for example, people relying on BiPAP machines to assist with breathing can be and have been refused access because of a shortage of trained staff to handle the equipment. “If people are going to live longer lives with ALS as a result of new treatment options, we need to make sure there are more resources in place to help them and support their families, including access to facilities and additional home support” insists Beth.

Now that Tim is gone, Beth is continuing to fundraise and volunteer for ALS Canada to help change the future for others. She’s giving her time because there’s no time to lose.

“I love volunteering in the office once a week. Everyone is so passionate and works so hard. I can see firsthand how well ALS Canada invests the money they raise,” says Beth.

Posted in: Research, Stories, Volunteers