November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers to the ALS community.
The day David DuBois got his ALS diagnosis, he and his wife Laura cried together. As Laura recalls, it was one of the first times she can remember her husband crying. Like many people facing ALS, they had hoped the symptoms David had were something else. Anything else. So when the official diagnosis finally came, they allowed themselves that moment.
But only that moment. “We made a decision that day when David came out crying that we're going to choose to live each day,” Laura says. “It was a shift in mindset that we can sit and focus on all the things that it’s going to take away or we can focus on all the things we have, right?”
For both David and Laura, that mindset shift would present challenges. David was used to being someone people called on for help, not needing help from others. From his time in the army as a military police officer through his time after his service, David has always tried to put others first. “David has always been a volunteer. Somebody who's always thinking about other people and trying to find ways to make things better for people,” Laura says. “(Our) girls grew up picking up trash on the side of the road, putting baskets together for Thanksgiving. So that's always been David's heart.”
For Laura, the mindset shift presented challenges as well. Laura grew up with two brothers with special needs, so caregiving had always been part of her life. Still, this was different. “The hard part was doing it for my husband who's one of the strongest people I know, and the strongest giver I know.”
Part of their shift was finding a different outlet for David. As Laura said, he had always been “a doer,” someone who used his hands. Now, raising awareness about ALS became his work. He started a blog, where he wrote “I am going to share with you my ALS story and how it has become my mission to teach others about ALS.”
On his blog, David wrote about the importance of caregivers for people living with ALS. “The love, compassion, and care required takes a special person, and it will change their life,” he said. “Laura has put her life on hold, and we don’t know for how long. Even with nurses and aides she can only get a few hours off physically, but emotionally her responsibility never turns off.”
While her life may now have a different purpose than before, Laura doesn’t see it as less full. In fact, she and David are determined to not be isolated by ALS. “You're just going to have a different norm for yourself,” she says. “We have an open-door policy in this house. I tell everybody I have a small house, it's really messy compared to how my life used to be, but everybody's welcome. Come on in. I might be able to offer you a cup of coffee that day. All the time we welcome people, and that has really filled our tank.”
Laura’s advice for other ALS caregivers is to try and see each and every day as an opportunity. As a chance to be with the one you love. “We can't make this all about ourselves because this is bigger than us,” she says. “So really just live for each day.”
On his blog, David explains how for people living with ALS, the tireless work and love from their caregivers can provide both hope and dignity. “The next time you meet a caregiver, give them a hug, tell them thank you, and that you love them,” he wrote. “Spend a little time with them and allow them to tell you how they feel. Buy or bring them a meal so they have one less thing they need to do. Don’t ask them how you can help them but ask them how you can help them most.”
For Laura and David, they plan to continue to raise awareness about the needs of people living with ALS, and their caregivers. “We feel like we have a responsibility and that we need to really try. To create ripples out from our center, which is David, we're trying to create as much of a ripple effect as possible,” Laura says. “I say to our family and friends, ‘you guys are all part of our ripple effect in the way David's the drop, and then you keep it moving.’”
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, follow our blog HERE.