On November 1, 2011, life turned upside down for Angèle. Her husband Pierre learned that he has amyotrophic lateral sclerosis, an incurable neurodegenerative disease that gradually results paralysis of the body. Nine years later, Angèle has become the voice, legs and hands of her husband, making her a full-time caregiver. Fortunately, through the ALS Society of Quebec’s services for caregivers in her area, in addition to the health network, Angèle is not alone.
Being better informed to provide better support
By registering free of charge with the ALS Society of Quebec, Pierre and Angèle received documentation on ALS and participated in information sessions. They met Yves Lafleur, a psychosocial worker at the Society, as well as many other health professionals including a doctor who explained the details of the disease to them. “We met other people with ALS and caregivers who were there. We realized that we are not alone and that there are resources,” says Angèle. The former teacher also participated in the Society’s trainings for caregivers so she could be better prepared to support her husband every day: choking situations, communication, safe lifting and transfer techniques for caregivers are just a few of the topics covered.
Customized technical and financial assistance
When Pierre started having difficulty speaking, the Society provided him with an electronic tablet to help him communicate more easily. The technical and financial assistance offered by the organization also helped him obtain an alert bracelet that issues a signal in the event of falls or need for immediate assistance.
“Every day, these services allow me to feel that Pierre is safe and reassure me if I have to be away for a short time,” says Angèle.
Psychosocial support at every stage of the disease
While the physical and logistical aspects of the disease represent a major challenge, the emotional impact is just as significant on Angèle’s life. Angèle participates in the Society's support groups and social activities, such as the outing to the sugar shack and the Christmas party. “I appreciate being able to talk to other caregivers who are going through the same situation as I am. You have to break the isolation. The impact of all the ALS Society of Quebec's services on my quality of life is enormous. The contact with other members who have become friends and the fact of knowing that there is a support network and people to listen to me help me keep up my morale and stay positive.”
The ALS Society of Quebec is the only organization in the province that provides psychosocial, technical and financial support to families affected by ALS throughout the province. For more information on all the services offered by the ALS Society of Quebec in Montérégie, visit www.als-quebec.ca, or call our psychosocial worker: Nadine Habra, 514-725-2653, Ext. 106.