Learning From Others: ALS Caregiver Resources and Support

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No two cases of ALS are the same, nor are any two ALS caregiver experiences. While there is no one-size-fits-all answer to every caregiver question, there is often much to be learned from people who are, or who have been, a caregiver for someone with ALS.

As National Family Caregivers Month comes to a close, we wanted to take a moment to highlight some of the advice, resources, and support available for ALS caregivers all year long.

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Person with ALS and caregiver

ALS Advice from One Caregiver to Another – Hear advice directly from ALS caregivers and learn from their experiences. This video series is designed to help answer some of the many questions caregivers have or will likely encounter as ALS progresses.

Caregiver Education Course – This free online course was created with guidance from people who have lived the caregiving role and who have shared their journeys in hopes they can make the path easier for future caregivers.

Care Matters E-Newsletter – Sign up today to receive our quarterly e-newsletter to help keep you up to date with the latest information about ALS care, disease management and resources to help you navigate your caregiving journey.

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Support Groups – ALS support groups, including our new Nationwide Connect virtual groups, are a great resource for people facing the disease. In addition to the wisdom that can be learned from other group members, they provide a safe space to share challenges and frustrations, serving as a reminder that no one is in this alone.

Your Local ALS Association Care Team – Even with all the tools and resources here, sometimes you have a question or problem that doesn’t seem to have a solution. Your local ALS Association care team has experienced something similar, and even if they haven’t, they are available to help you figure it out.

Our Blog – Subscribe today to follow stories from the ALS community, receive updates on research and care, and learn more about those advocating for people living with ALS.

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The ALS Insurance and Benefits Resource Line – In partnership with the Patient Advocate Foundation (PAF), this Line is a free resource designed to provide individualized case management assistance for people living with ALS, their family members and caregivers, to help reduce the financial burdens of living with ALS.

ALS Association Care Connection – An easy to use, private online calendar to help support the entire family. Organize friends, family and volunteers to take care of some of the tasks families often describe as those "falling through the cracks” when they are busy as a caregiver.

Respite Care – Every caregiver needs time to care for themselves. Even if it is just a few hours to run errands, or even to do nothing at all, time away from caregiving is vital for everyone, and often makes for a better experience for everyone.

While no single item from this list will make ALS caregiving easy, learning about and leaning on the many resources available can hopefully ease some of the challenges, giving you some peace of mind that you don’t have to face them all by yourself. Together, we will make ALS livable for everyone, everywhere, until a cure is found.

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

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