Caring for someone with amyotrophic lateral sclerosis (ALS) isn’t easy. It is a 24-hour a day, seven-day a week job that takes a tremendous physical and emotional toll on caregivers. To help caregivers cope, the ALS Society of Quebec is expanding the services available to those looking after a loved one with the debilitating neurodegenerative disease.
Thanks to a very generous grant of $450,000 over three years from l’Appui Montreal, the Society is gradually adding services specifically designed for caregivers including educational materials, training sessions, social activities, psychosocial support and respite care. Funded by the Quebec Government and the Chagnon Family Foundation, l’Appui Montreal’s mandate is to work with local organizations to improve services and support available to caregivers. There are regional offices of l’Appui across the province.
“On behalf of all those caring for a loved one with ALS, I want to thank l’Appui, Montreal for its financial support,” says Ms. Claudine Cook, Executive Director of the ALS Society of Quebec. “The grant allows us to develop and improve the services we offer caregivers. This will have a profound impact on their lives. In addition, the grant is an acknowledgement of the tremendously important and unrelenting work done by caregivers who carry a heavy burden without complaint. Caregivers are the backbone of our health care system and we need to do everything we can to support and help them.”
L’Appui pour les proches aidants d’aînés de Montréal (l’Appui Montréal) is very proud to support Project SLAppui: Caring for Caregivers, an initiative of the ALS Society of Quebec. L’Appui Montréal believes that the personalized support program designed for caregivers will have major impacts on improving their quality of life by supporting them and listening to them throughout their journey. Thanks to the involvement of warm and experienced workers as well as its numerous partners, the ALS Society of Quebec has created the ideal conditions to ensure that caregivers feel supported and comfortable expressing their emotions.
While the financial assistance is from l’Appui Montreal and is meant to help caregivers living on the Island of Montreal, the grant allows the Society to rearrange the workload of its psychosocial councilors and therefore increase services available to those living in the regions as well.
The Society has hired two psychosocial councilors bringing the total number of councilors to four. Some of the services for caregivers that will be introduced over the next three years include:
- Personalized and ongoing support that will meet the unique needs of each caregiver;
- Open house information sessions for caregivers who recently learned a loved one have ALS;
- Information about the disease, the services provided by the health system, community organizations and the ALS Society of Quebec available on the Society’s website (www.sla-quebec.ca) and in a brochure;
- A telephone support line caregivers can call with questions, concerns or to request help;
- Friendly visits by volunteers and social workers to see how caregivers are coping;
- Conferences and teleconferences for caregivers on topics like: how to use medical equipment; how adapt to meet a loved one’s evolving medical needs; how to cope with stress and anxiety; how to navigate the health care system; how to deal with legal and financial issues;
- Social activities and caregiver support groups designed to break the isolation; allow them to talk and ask questions freely and openly and give them an opportunity to meet others living similar experiences;
- Respite care, particularly for low-income families.
“I am extremely happy to learn thanks to the grant from l’Appui, the ALS Society of Quebec is able to offer additional support services to caregivers,” says Elysée Claude Leveillé, who took care of her husband Marc Lavigne who succumbed to ALS three years after diagnosis. “Caregivers need high spirits and plenty of energy to get through the day. It’s very tough. We are in a constant state of mourning as we helplessly watch our loved ones slowly lose the battle with this terrible disease. It is important to give caregivers a chance to relax and disconnect from time to time so they have the strength to deal with the challenges they face. People always of think of the person who is sick, meanwhile caregivers devote themselves wholeheartedly to their loved one completely forgetting to take care of themselves in the process.”
Road trip to make people aware of the ALS Society of Quebec’s services
Between now and the end of the project, the Society will visit each Health and Social Services Centre (CSSS) in the greater Montreal area as well some in the regions. The goal is to make sure health care providers, patients and family members are aware of the services the Society provides.
“We believe that by reaching out to caregivers and encouraging them to take advantage of the services, training and tools the Society has to offer, they will be better able cope with their daily challenges. They will also be better equipped to care for their loved ones as well as themselves reducing injury, burnout, depression, anxiety and grief,” says Véronique Pignatelli, Director of support services, ALS Society of Quebec.
Reducing the burden on caregivers
The vast majority of people living with ALS, 95%, are cared for at home principally by loved ones. According the Society’s records, 51% of caregivers are age 65 or older and 38% are between the ages of 45 and 64.
“Caregivers put their lives on hold to accompany their loved ones through their journey with the disease,” says Ms. Pignatelli. “ALS often progresses at such a dizzyingly rapid rate caregivers have a hard time keeping up with the constantly changing and growing list of care their loved ones need. On top of the workload, they grieve their loved one’s loss of autonomy and the old life they shared. They often feel isolated having had to give up their careers and social life. They are anxious about what the future holds. The ALS Society of Quebec wants to help. We want to ease the burden on caregivers and give them a little relief.”