Finding Help and Support for ALS Caregivers Nationwide

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Being diagnosed with ALS is devastating and overwhelming. In recognition of National Depression and Mental Health Screening Month, we’re shining a spotlight on the importance of mental health education and resources available to find help and support for people living with ALS and their families.

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Being the primary caregiver for a loved one living with ALS can be stressful. In addition to being on call 24/7, you may have additional responsibilities, like working a full- or part-time job and taking care of children. Caregivers are often so busy supporting their loved ones that their own physical or mental health takes second priority. It’s important that you get the support and assistance you need so you can care for your loved one to the best of your abilities.

We recently launched Nationwide Connect, monthly online support groups for both male and female ALS caregivers designed with one thing in mind—enhancing quality of life and supporting families impacted by ALS regardless of where they live. They follow support group best practices and join people together who are dealing with similar experiences.

Taking place online via Zoom, our nationwide virtual groups offer a safe place where you can get information that’s practical, constructive, and helpful.

Women and men often have different experiences and challenges when it comes to caregiving. (Nationwide Connect) allows individuals to connect with others who may better understand their unique circumstances and provide relevant advice and support.”
Sally Dwyer
Vice President of Care Services at The ALS Association

Nationwide Connect and other ALS-specific caregiver support groups provide a space where participants can feel understood, valued, and supported. It can empower them to navigate the challenges of caregiving with more resilience and offer them a sense of community with others who share similar experiences.

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We know that when caregivers make their own physical, emotional, and mental health a priority, everyone benefits. “(Being a part of a support group) helped me to believe I can do this,” said Karen, who has attended an ALS caregiver support group. “One of my biggest fears (was) whether I’ll have the physical strength and courage for the role of caregiver. Every month I (saw) people who are doing that successfully. They’re exhausted, maybe don’t even have time to brush their own teeth, yet they are making it. I can too!”

Remember, help is out there, and you are not alone. With the help of mental health professionals and the community through support groups like Nationwide Connect, we are working to ensure that everyone, everywhere in the ALS community has access to the help and support they need.

To learn more about Nationwide Connect or to find a support group in your area, visit als.org/supportgroups.

To learn more about the disease and follow stories about people living with ALS in the community, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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