ALS: “People often say you need to get informed, and then informed again, but it can become overwhelming!”

I’m a trained social worker. I joined ALS Quebec in 2015 and worked for six years as a psychosocial counselor. Today, I support programs and services for people living with ALS, their caregivers, and healthcare professionals.

My master’s thesis in 2013 focused on caregivers, from a feminist perspective. In class, we often discussed how it was usually the eldest daughters who took care of aging parents. That struck me—since I’m the eldest in my own family. Seeing how young women were taken for granted in this role… that really pushed me to explore the subject further. At the time, caregivers were hardly talked about in the healthcare system—a real paradox! I had worked in hospitals and saw how services revolved entirely around the patient. On one hand, that made sense, but on the other, family members are experts on the person who’s ill.

ALS is a progressive disease that gradually robs people of the use of their arms, legs, speech, swallowing, and breathing. Its progression is unpredictable—it may begin with the voice, or with a single arm. There is no “typical” path, and the pace of decline varies greatly from person to person. For caregivers, this uncertainty is incredibly hard to bear.

Exactly. You can’t plan ahead with certainty. You never know which function the person you are caring for will lose next, or how soon. It’s intense for caregivers. The needs pile up—mobility, daily living activities, meals, equipment, hygiene care, transportation, everything. And things get even more intense at the end of the disease. It all requires an enormous amount of learning. For 80% of people with ALS, life expectancy falls between two and five years. Within that short time, caregivers must learn everything. They never really get a chance to catch their breath. They must constantly adapt. It demands a tremendous amount of flexibility.

In most cases, people with ALS retain their cognitive abilities until death. Only about 10% are affected by frontotemporal degeneration. Two-thirds of patients receive their diagnosis after age 60, often when they’re already retired. They had dreams, projects... When the diagnosis comes, there’s a series of losses to grieve for the life they will no longer live.
For the caregiver, there is an “after”—but it will be completely different from what they and the person they are caring for had imagined before the diagnosis. We know how strongly caregiving can impact both physical and mental health. So there’s also a risk of long-term impact after caregiving ends.

Yes, and in many areas of life: the physical capacities of the person with ALS, the couple’s relationship, intimacy, and more.
There’s also the financial aspect. On average, someone living with ALS in Canada spends $200,000 over the course of their illness. The disease requires extensive equipment and care. The public healthcare system often can’t meet all needs, so families may want to add services like respite care. Some simply can’t afford it and must make do with what they have.
Of course, there are great stories within the healthcare system. Still, caregivers often tell us things like: “According to the assessment, we should be getting home nursing care, an occupational therapist, and 20 hours of respite per week. The CLSC doesn’t have the resources, so we only get 5 hours.” There’s a real shortage of home care. Yet most people with ALS remain at home—only about 10% live in long-term care facilities.

They ask a lot about the progression of the disease. That’s why we provide them with a comprehensive 127-page guide, developed with ALS societies across Canada. Our website also has a resource center, where people can find services and support. Caregivers can filter search results simply by checking “I am a caregiver.”
ALS Quebec strives to be as inclusive as possible. Right now, we’re focusing on tools for young caregivers, since more and more children and grandchildren are stepping into that role. In 2024, we partnered with Dr. Melinda S. Kavanaugh and her YCare program. In small groups, kids meet occupational or respiratory therapists, learn what each professional does, and handle equipment. Families often struggle to talk about ALS with children, who want to protect their loved ones. But during a YCare day, kids are with peers… They ask a ton of questions and realize other children share their reality.

I was fortunate to join ALS Quebec at a time when there was already a clear will to support families. A grant from L’Appui pour les proches aidants gave us the opportunity to deepen our knowledge of caregiving, develop skills, build partnerships with other organizations, and contribute to the creation of Québec’s National policy for caregivers.
Today, caregiving is fundamental at ALS Quebec. We open files for caregivers, even when the person they are caring for isn’t a member of ALS Quebec. Caregivers are encouraged to reach out for whatever support they need. It might be purely informational, or it could be more in-depth follow-up, end-of-life or bereavement support, or help accessing financial assistance.

What I’m about to say might be a little controversial: respect your own rhythm. Caregivers often want to be very prepared, and they read everything they can to anticipate every possibility. But ALS is so heterogeneous—the person you are caring for won’t necessarily experience every symptom. If you feel the need to go more slowly, talk to the occupational therapist or your ALS Quebec counselor: “Here’s what the person I'm caring for needs right now. What’s the next change? What should I expect?” Go step by step, rather than trying to learn everything at once.

Because people often say you need to get informed, and then informed again—but it can become overwhelming! On the ground, we see it all the time: because ALS is unpredictable and its progression differs so much from person to person, people often worry about things that will never happen. I believe that limiting the constant search for information can help caregivers feel less burdened. Staying close to present needs, here and now, can be a real source of relief for caregivers, who already feel the heavy weight of responsibility on their shoulders.

• ALS Quebec
• ALS Quebec online resource centre
• YCare Day – For young caregivers
• The ALS guide
• Amyotrophic Lateral Sclerosis (ALS) : resources and references
• Being a young caregiver
• Find resources

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