John Bookstaver has always had a passion for helping those in need through charitable deeds. That passion led to his service on United Way’s West Region Board of Directors. Little did he know, at a time of vulnerability for him and his family, he would be the beneficiary of the very cause he helped serve.
Commitment to service
John’s passion for teaching began as a graduate student in college that he parlayed into a long-tenured career in education. Over the course of 25 years, he served as a professor, dean, and vice president for academic affairs and enrollment at St. Charles Community College before retiring in 2020. One of the things he loved most about his career in education was the connections with his students.
“Education is a relational business and in order to be effective, I think you really need to connect with the students, and I was able to do that,” said John. “I have many students who still keep in touch with me even after 20, 30 years.”
John’s enthusiasm for molding young minds coupled with his volunteer efforts through various churches and charities prompted the school’s president to offer him the opportunity to represent them on United Way’s Board of Directors. John had already been a longtime donor, so he leaped at the opportunity to get more involved and serve with the organization.
As a board member, his goal was to create more engagement amongst the community and his fellow board members to support United Way. One of his favorite things to do as a board member was to visit some of United Way’s 160 partner agencies to observe the programs and services they provide and meet the people they serve. He found this was an especially impactful way to fully appreciate how important United Way’s funding, and his own donations, is to these organizations and our neighbors.
“Every couple of months we would visit one of the agencies and see what kind of work they did, and it was terrifically edifying to see how much good is done by United Way [supported] agencies,” said John. “I was also impressed by the figure that 1 in 3 people in the area utilize United Way’s services at some point. I never really anticipated that I would be one of those people, but life takes some turns.”
A few months after John retired, his wife, Kathy, began experiencing some pain and weakness in one of her legs and started falling. She subsequently began physical therapy at the advice of an orthopedist, but her condition continued to deteriorate.
Her falls started happening with greater regularity and the pain she felt in her legs eventually spread to her hands. She was sent to a neurologist who diagnosed her with ALS. After receiving the devastating news, John and Kathy had to face the harsh reality of Kathy’s future.
“We knew this was the beginning of the end for Kathy,” said John. “While she and I were actually pretty calm, our kids took it pretty hard. It took us a little while to wrap our heads around what this was going to mean and how our lives were going to change.”
The neurologist referred John and Kathy to the ALS Association-St. Louis Regional Chapter, a local United Way supported nonprofit. The ALS Association provides patients and their families with information, resources, proper care, and referrals to a wide range of community services that help them cope with the day-to-day challenges of living with ALS.
They gave John and Kathy a grant to pay for a caregiver to come to their house a few times a week to provide aid and support for Kathy while also taking care of some of the household chores. While this support was critical for Kathy, it also provided incredible support for John, giving his family peace of mind during a time of angst and uncertainty in their family’s lives.
While much of his focus was caring for Kathy, the ALS Association stressed to John the importance of taking care of himself as well, recommending respite care as a way for him to relieve stress. They understood the burden a disease like this can bring on a spouse.
“They care so much about their clients, they become personally involved,” said John. “With having a spouse with this disease, you get thrown into a caregiver’s role without any training and that can be tough.”
The ALS Association provided as much support as they could to John and Kathy over the course of nearly two years until Kathy passed away in October 2022.
John was so touched by the way the ALS Association supported him and his family, he decided to join their newly formed Caregiver Advisory Board of Directors, developing materials and workshops to help those who are thrust into caregiving roles just as he was.
“These are caregivers helping caregivers,” said John. “We’re there to show people that we were where they are at one point, we know what they’re going through, and they are not alone.”
John said the opportunity to serve the community in a variety of capacities throughout his life has been a rewarding experience for him, and for he and his wife to receive support and comfort from an organization that his donation dollars helped fund made it even more special. Selflessness and lending a helping hand to a neighbor in need has always been a priority for John and will continue to be.
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