While no one is fully prepared to face the shocking diagnosis of a spouse with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, Barbara “Bobbie” Wesley says her experience as a military wife has helped her cope with the challenges of being the main caregiver for her husband, Glen.
“Being a military spouse taught me to be very independent and to figure out how to handle the challenges of a family when Glen was away,” she says. “It was pretty challenging at times, but it certainly has made me a better person.”
Glen, who retired from the Air Force in 1980 after 22 years of service, was diagnosed with ALS in February of 2010. At the time, he still maintained his independence, but he gradually lost the ability to walk and use his hands, Bobbie says.
As Glen’s disease has progressed, Bobbie says the hardest thing for her has been to accept the fact that Glen can no longer do the things he once took great pride in, such as his love for carpentry and blacksmith work. “After he retired, he was always in his workshop,” she says. “To know now that he can’t do those things is sad.”
And while each day brings new challenges for Glen, it also brings new challenges for Bobbie, who also serves as a caregiver for her 91-year-old mother. At one point, she had to come to grips with the fact that, as much she would like, she can’t do it all.
“The job of caregiver is challenging,” she says. “It’s physically tiring; it’s emotionally draining. You want to make sure you’re doing everything you can to ensure you’re getting as much out of the present time as you can. And you have some days where you wish you’d had a better day.”
Despite all of those challenges, however, Bobbie has maintained a positive attitude and has worked tirelessly to maintain her family’s independence and keep their lives as normal as possible. The couple still attends church every Sunday and manages to attend many of the school and sporting events for their five grandchildren. The couple also works to maintain a vibrant social life with friends and family, she says.
And that brings her back to her life as a military spouse, a time in her life that she still looks back to for strength and support. Glen and Bobbie continue to visit and keep in touch with many of their friends from the military, and they have provided a great support system, she says.
“These are people who will be our friends until our dying day,” she says. “That camaraderie is not something you find in civilian life.”
Bobbie also attends a caregivers’ dinner once a month that she says helps her and other caregivers share their thoughts, challenges and support. “It’s great for the caregivers to get together and share,” she says. “We learn a lot from each other.”
Read more about veterans with ALS
Brittany Ballenstedt is a freelance journalist whose work has appeared in several publications, including Government Executive, National Journal, Technology Daily and NextGov.com.