A Community of Support
From One Caregiver to Another

When your loved one receives a diagnosis of ALS, you transition into a new role as a caregiver. This may happen gradually, over time, or quickly, catching you off guard and unprepared. Regardless of where you are in your caregiving journey, hearing from others who are in a similar situation can add insight, comfort and support. These caregivers and people living with ALS have shared their thoughts and advice so that you can be assured that you are not alone.

We encourage you to connect with other caregivers through your local chapter or online forums. Often the best support comes from those who have walked the path before you, and along the way you will have advice to share with those who follow.

Advice for Caregivers

“I think with something this big and this scary, the more you can learn and the more you poke at it and explore it, and really understand it, the more you do that, the less scary it gets.”

Donnie Graham and Jan Steinbock share their advice for caregivers and how to prepare for the changes that come with living with ALS.

 

Approaching the Difficult Issues

“Just knowing there were people to help and that no matter what we did, we didn’t have to make it a miserable experience. We could choose to basically attack this in a way on our own terms.”

Donnie Graham and Jan Steinbock talk about dealing with the difficult issues related to ALS progression and how they have chosen to approach life with ALS.

 

Talking with Kids

“I read somewhere, talk with your children openly, but only give them pieces they can handle, pieces at a time, and end on something hopeful and a high note.”

Courtney VanTress talks about how her and her husband Jeremy have educated and prepared their kids for living with ALS.

 

Being a Young Adult Caregiver

"It's just hard to make a decision about the rest of your life when you don't really know what's going to happen in a year from now, because things with this disease change so often."

Being a caregiver as a young adult has its own set of challenges and difficult decisions. Maya Bulmer shares her perspective on her mom’s diagnosis.

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Maya and family

 

Maintaining a Sense of Normal

“We both have jobs and we both go to his son’s baseball practices or hockey practices or watch whatever’s on TV that night. So, interweaved in all of the caregiving and the time that we have to put in to take care of the disease, we try to be a normal family.”

Lynn Ziegler talks about caregiving for her husband Steve, who was diagnosed while they were dating.

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Ziegler family