Caring for someone living with ALS is a unique journey, often filled with emotional and physical challenges. Finding connection with a supportive community of other ALS caregivers who can be a helpful sounding board with some of the everyday struggles you encounter can help make all the difference.
Our Nationwide Connect support groups offer a compassionate and accessible space for caregivers to connect, share, and find strength together. This program, a lifeline for caregivers across the country, provides a virtual forum where people can come together to support one another through the daily realities of ALS caregiving.
The program recognizes that caregiving can affect men and women very differently, leading to separate support groups for each. Every month, on the first Thursday, a group for women caregivers meets, and on the third Thursday, the men’s group comes together. This approach respects the diverse experiences of caregiving while promoting meaningful connections that resonate on a more personal level.
Taking place online via Zoom, sessions are thoughtfully guided by professional ALS Association care service staff. To make sure everyone’s voice is heard, members break out into smaller groups, or "rooms," after brief introductions. These intimate breakout sessions allow for open sharing on topics like managing home care, resilience, travel tips, home adaptations, and the emotional aspects of caregiving.
Participants also receive a follow-up email with resources and information based on the session’s discussed topics, further enriching the support experience. And after celebrating our first anniversary of the program last month, we are proud to share that over 324 caregivers have been able to join us from 33 states, and new participants are joining each month!
But joining Nationwide Connect is about more than exchanging caregiving tips; it’s about finding a community that understands the reality of ALS and the difficulties. As Paula, a group participant noted, “Just knowing you’re not alone with your loved one is very helpful. Knowing and meeting others going through what you’re going through helps tremendously.”
The sessions also offer a valuable emotional outlet, which can be crucial for maintaining resilience and well-being. Nationwide Connect has empowered many caregivers to tackle the demands of caregiving with confidence.
Karen, a caregiver who participates in ALS support groups regularly, says they have helped her overcome fears about her own abilities. “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!"
Additionally, the program promotes self-care, which is vital for caregivers who often put their own needs aside. Prioritizing mental health is essential, and Nationwide Connect offers a safe space where caregivers can prioritize their emotional well-being, sharing openly with others who relate to the unique demands of ALS caregiving.
ALS caregiving can feel like a solitary journey, but Nationwide Connect offers a chance to walk alongside others who understand. The sense of community, the shared experiences, and the practical advice make a real difference in caregivers' lives, inspiring hope and providing much-needed comfort.
As one caregiver eloquently put it, “I love this group and the discussions throughout the meeting. This group provides a safe place to talk about probably the most difficult situation you will ever face in your lifetime. Thank you so much!”
To learn more about Nationwide Connect or to find a support group in your area, visit als.org/supportgroups.
To find more ALS caregiving information and resources to help support you or someone you know, visit our website HERE.
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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