ALS impacts more than just the person with the diagnosis. Acting as a family caregiver for a person with ALS can be a daunting task, and asking for help can be even harder.
“We’ve always understood that ALS is a disease of the whole family,” shares Susan Pennock, Care Services Director. “While we work hard to first and foremost support the person living with ALS, we know the importance of providing additional services to all members of the household—especially the caregiver who is often a close relative or spouse.”
Donors provide a variety of supports for caregivers of people living with ALS:
Caregiving 101
ALS Northwest is grateful to partner with specialists at Providence Brain and Spine Institute to present bi-annual, virtual caregiver training sessions in April and October. Family caregivers learn the practical skills they need to safely care for their loved one, including information about how to operate unfamiliar tools and equipment such as Ambu Bags, patient lifts and feeding tubes.
At the same time, family members receive the resources they need to practice self-care, cope with burnout, and explore in-home and respite care options. They also have the chance to learn from other ALS caregivers who often have years of lived experience.
Family Caregiver Support Groups
ALS Caregiver Support Groups provide a unique space just for family caregivers to share their personal experiences and learn from others. Led by professionals, these regional in-person and virtual groups are an invaluable space of understanding for people caring for a loved one with ALS.
Family Caregiver Mentor Support
For family caregivers, the best support often comes one-on-one from those who are on the same journey. Through this volunteer program, former ALS caregivers provide support and guidance to those who are newer to caregiving.
“Through volunteering, I was inspired to overcome a deeply painful reminder of my own circumstances,” shares Lee Miller, a former ALS caregiver. “There aren’t a lot of people available who understand the experience caregivers face, so it’s rewarding to feel the appreciation of my efforts from the mentees.”
Comprehensive Caregiver Resources
There is a wealth of supportive information and resources available to ALS family caregivers on our website. From organizing care and asking for help to coping with burnout, families have access to tools that can provide hope and respite throughout their loved one’s ALS journey.