When Former Caregivers Stay Engaged

A note of thanks to share during National Caregiver Month

Former caregivers of loved ones lost to ALS have every reason and every right to want to get as far away from that illness as they can. Every time they hear about ALS must bring back painful memories. No one can blame them if they walk away once the caregiving is done.

Which is why I am so impressed by and grateful for the huge number of former ALS caregivers who commit themselves to volunteer positions in our many ALS organizations. They make up a sizable percentage of the fundraising teams and board members in our groups, at both the local and national level.   And they devote time on support forums to provide help and advice to current caregivers. 

It’s not hard to understand why they do it – to honor the memory of their lost loved one, to support people going through what they went through, and to work for a cure to spare others of what they and their pALS went through.

What is harder to understand is how they do it – how they cope with the memories and emotions they must feel every time they encounter one of us with ALS, every time they are part of a conversation about support to current caregivers and pALS. These are people with special courage.

I know a thing or two about this. My younger sister, Janie, the second of four children, was born with severe developmental disabilities and required intensive, full-time care throughout her short life. My young parents, especially my mother, had to take on the very difficult job as a  24/7 caregiver for Janie with few resources and while trying to raise a family and pay bills. Luckily my grandmother was there to help.  Looking back, I don’t know how they did it.  It was a difficult, exhausting time for all of us. It made those years of my childhood less carefree than childhoods are supposed to be.

After Janie passed, I walked away. I avoided any volunteer or other engagement for causes involving children with severe developmental disabilities. It was too close to the bone, too difficult to revisit those hard times. I just wanted to close that chapter of my life and move on.

As I watch so many former ALS caregivers — now my colleagues —  throw their energies into our ALS organizations, I look back with regret that I did not have the strength to explore ways to support organizations dedicated to my sister’s condition.  But it puts me in a better position to fully appreciate how much emotional strength it must take our former caregivers who remain engaged in the fight to defeat ALS.

To all of you former ALS caregivers still helping us fight the good fight, you have our deepest thanks and admiration for all you continue to do for us. You are honoring the memory of the loved one you lost in a very powerful way.


Author: Ken Menkhaus

Professor of Political Science at Davidson College. Specialist on Somalia and the Horn of Africa. Interests include development, statebuilding, informal governance systems, peace and conflict studies, and political Islam. I also teach on philanthropy and the non-profit sector.

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