Being a caregiver to someone with ALS

The ALS Society of Quebec knows that caring for someone diagnosed with a neurodegenerative disease is physically and emotionally demanding. From the outset, the Society’s goal has always been to improve the quality of life of caregivers, as well as those diagnosed with ALS, by providing services to support, equip and refer our caregiver members as needed, thus lessening the risk for injuries, exhaustion, depression, anxiety and eventually, pathological mourning.

First steps

If you are caring for someone with ALS, it is important to know what to do in order to facilitate your access to resources that are available.

  • Register with your local CSSS

    The first step for someone with ALS and their caregiver is to register to their local Health and Social Services Centre (CSSS) in order to meet with a healthcare professional who will guide you and your loved one toward appropriate services.

Continuous improvement of our programs and services

Based on our team’s expertise, we are proud to have increased and diversified the following services:

  • Personalized and continued accompaniment and support that meets caregivers’ specific needs, at the outset of and throughout their journey with ALS
  • Information about the disease, referencing services, support and respite resources which are available in the healthcare system and through community organizations
  • Emotional support and follow-ups through in-person meetings at our offices, home visits, phone contacts and emails (which also breaks isolation and provides answers/ information)
  • Monthly presence at four important ALS clinics of the region in order to reach and support to caregivers: Montreal Neurological Institute, Notre-Dame Hospital, Maisonneuve-Rosemont Hospital and St-Jérôme Hospital
  • Information sessions, support groups, informal meetings, cocktails, appreciation days and social activities dedicated to caregivers and the bereaved.
  • Conferences, teleconferences and training