Rebeccah Byer, sister of Ben Byer, wrote this moving and candid article about her experience caregiving for her brother. Ben was officially diagnosed in 2002 and died from ALS in 2008 at the age of 37. ALS Worldwide was founded by his parents, Stephen and Barbara Byer, to honor Ben’s wish that they continue to fight for a cure, raise awareness, and provide free support to people living with ALS and their loved ones.
“It has been over ten years since I was a caregiver to my brother Ben. I have new ones to care for now, two young sons, but it is a completely different world taking care of someone with ALS. I have an affinity for people now, people who take care of people.
I didn’t realize how profoundly the experience would affect me at the time. Friends and family were always thanking me for helping my brother, and were maybe even a little relieved that they didn’t have the job. I didn’t really do it by choice, it just happened, as life often does. It was hard, a lot. I cried, a lot. I felt overwhelmed, a lot. But now, ten years later, hindsight tells me I would not have changed anything, other than the obvious—Ben not having ALS.
When Ben moved into my apartment, we had no idea what ALS was. The term ‘caregiver’ probably meant little to me. He needed a place to stay and I had room, and honestly, we thought he would move out after a few months. His son was three at the time, making life complicated, messy, and often times very sad.
But the true reality is, perhaps just because of who Ben was and who I am, we made it OK. We laughed, we had fun, we figured it out. I tried my best, and so did Ben. We definitely had some troubling moments, and bathing and feeding your older brother was not ideal for either of us. But, as Ben always said, ‘it is what it is.’ I cherish those times, and I cherish that experience.
Empathy and gratitude. That is what I learned being a caregiver, and it has been a gift I’ve embraced ever since. I wanted Ben to have as much dignity and control over his life as possible, knowing that he was losing more and more each day.
I would like to think that I would be a kind and caring person without that experience, but in no way will I deny that it changed me in permanent and significant ways. I do my best to make no assumptions and have no expectations because it was always what I wanted for Ben. I just wanted people to still see him, while we watched him disappear.”
North Carolina, USA
Visit The Family Caregiver Alliance at caregiver.org for helpful information, support, and resources for family caregivers.
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