It Takes All of Us—Resources for ALS Caregivers

Caregiver and person living with ALS

As no two cases of ALS are the same, nor are any two ALS caregivers. There is no one-size-fits-all answer to each caregiver question, but that is not to say there isn’t much to be gleaned from the experiences of others.

November is Family Caregivers Month, and during this time we have been highlighting caregivers in the ALS community as well as resources available to ease the challenges caregiving for a person with ALS presents. As the month comes to a close, we wanted to take a moment to shine a light on some advice, resources, and support available for ALS caregivers.

ALS Advice from One Caregiver to Another – Get advice directly from ALS caregivers. This video and resource series to helps 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 the caregiving journey.

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

Connecting ALS Podcast – Listen to our weekly podcast for the community of people living with and leading the fight against ALS. Connecting ALS has featured many episodes about caregiving and caregivers with practical advice about living your best life while fighting ALS.

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.

Support Groups – ALS and ALS caregiver support 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, and serve as a reminder that no one is in this alone.

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.

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 likely experienced something similar, and even if they haven’t, they are available to help you figure it out.

No single item from this list will make ALS caregiving easy, but hopefully leaning on the resources here can ease the challenges and give you some peace of mind that you don’t have to face them all by yourself. It takes all of us, working together, to fight ALS.

In honor of National Family Caregivers Month, download this infographic about caregiving and share on your social platforms to support a caregiver you know. To learn more about how you can get involved in the fight against ALS, visit our website HERE.

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


Submitted by: Debbie T. on Thu, 11/30/2023

My husband was diagnosed in May 2023 with Bulbar ALS

Submitted by: Sandy B. on Wed, 12/13/2023

My heart goes out to you honey ! You have to be strong , very strong !! It is very unique in our family , takes 2 out of every generation , never gonna stop !! I have lost 6 family members so far . I took care of my mom by myself , for 13 months ! I have seen this awful desease from beginning to end ! I still have nightmares . I put my life on hold , and devoted my life to my mom. I cried alot , and gave her the best of care !

Submitted by: Sandy B. on Wed, 12/13/2023

I have lost 6 family members to ALS . My grandpa,his sister, and father .my uncle , my mom , & my little brother , he was only 40 when it hit . I had generic testing done over 10 yrs ago . My test came back , I thought I was only doing it for family research . OMG , I am a carrier of the fig4 , and positive on the C9 with 44 repeats . I felt death , was speechless !

Join the conversation. Please comment below.

2 + 1 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.