ALS Advice from One Caregiver to Another

Caregiver and person living with ALS

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 possibly unprepared. Regardless of where you are in your caregiving journey, who better to accept advice, guidance and emotional support from than other families and caregivers who are living through similar experiences?

The ALS Association has developed a video and resource series entitled “From One Caregiver to Another,” to help answer some of the many questions caregivers have or will likely encounter as ALS progresses. These caregivers and people living with ALS have shared their thoughts and advice so that you can be assured you are not alone.

Donnie Graham and Jan Steinbock shared their advice for caregivers about how to prepare for the changes that come with living with ALS. When asked what advice they would give to new caregivers trying to make early decisions and planning, Jan said, “Just explore the options. And if you really feel like it’s not something that’s going to work for you and for your, your person with ALS, keep exploring.” They stressed the need to talk a lot and discuss the many impending changes well in advance to help everyone prepare both mentally and physically as the disease progresses. “We start talking about things early and getting things in place as soon as we can,” she said. “Just anticipating things makes a big difference.”

Courtney VanTress talked about how she and her husband Jeremy, who is living with ALS, educated and prepared their kids for living with ALS. With six young children, communicating age-appropriate information presented its challenges. “I had read somewhere that you should talk with your children openly,” she said, “but only give them pieces that they can handle, like pieces at a time on something hopeful and end on a high note. And I think those two things have always guided my conversations with the children. Give them the next piece, you don’t have to give all of it upfront,” she says, “give them the next piece and we always end on a high note.” The example she provided was “look, you’re going to be able to help your dad do this and he’s going to be so grateful that you helped him.” She says the children are slowly learning more as his disease progresses and have really rallied around him.

Being a caregiver as a young adult has its own set of challenges and difficult decisions. Maya Bulmer shared her perspective on her mom’s diagnosis. Maya said the reality of ALS hit home when they picked up her mom’s wheelchair. “This disease has challenged me to think today is what we have,” she said. “We don't know about tomorrow. We don't know about a year from now, three years from now, so I just want to focus on being happy right now with my family.”

You can find additional advice ‘from one caregiver to another’ on our website. We encourage you to connect with other caregivers through your local ALS Association chapter or online forums. Often the best support comes from those who have walked the path before you, and along the way with you, and you will have advice to share with those who follow.

In recognition of National Family Caregivers Month, we have been fortunate to publish guest blogs from several other caregivers who were kind enough to share their thoughts and experiences as ALS caregivers. Learn more from Susan Seabrook caring for her mother, Lori Ruhlman caring for her husband with ALS and FTD and Patty Letters caring for her husband Bob.

To learn more and find additional resources for ALS caregivers, visit our website HERE. To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog at als.org/blog.

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