Belchertown mother advocates for military caregivers like herself

BELCHERTOWN — After her son joined the Air Force, Betty O’Brien imagined a military career for him filled with adventure and reliable job benefits.

Now, after he was stricken at 23 with a deadly illness, she drives him to doctor’s appointments, balances both their finances and prepares meals for them as a full-time job. 

Kevin O’Brien was working as a fighter jet mechanic for the Air Force when he was diagnosed with a rare cancer called medulloblastoma in November 2013. After a surgery that left him handicapped with impaired motor skills, he underwent dozens of proton radiation therapy treatments and five weeks of chemotherapy, before returning home in a wheelchair.

“In the beginning it was very hands-on and very intense,” Betty said. “When we came home it was all about rehabilitation — learning how to walk again, learning how to talk.”

In February, Betty was named a 2018 Elizabeth Dole caregiver fellow for her work advocating on behalf of disabled military veterans and their caregivers like herself.

Caring for wounded, sick and disabled military veterans is a full-time job for more than 5.5 million caregivers across the country who rely on support from the government to get by. Founded in 2012 by the former Republican U.S. senator and Cabinet member, the Elizabeth Dole Foundation works with leaders from public, private, nonprofit and faith-based organizations to advocate on behalf of military caregivers nationwide.

Giving up her career as an asset manager and business owner, Betty O’Brien dedicated herself to caring for her son. In the hospital, doctors told her that Kevin could die, and every day since has been a small victory.

“After that moment of crisis was over, we’ve always been on a positive path. We knew the way out was staying positive,” she said. “My son has never complained about anything.”

Kevin served as an avionics technician on F-15 fighter jets for nearly eight years before he was medically discharged in March 2015. He loved his job as a fighter jet mechanic, never saw combat, but did get sent to Dubai to work on jets overseas.

“Thankfully, before my surgery, I got to do a lot of things, but now it’s just a little tough,” he said.

Betty described the guilt of grieving a loved one still living, learning to accept they will never be the same, and cherishing every experience. Building a support group of caregivers grappling with these feelings is a goal of hers as an Elizabeth Dole fellow.

“So many people had given to us, I just felt that we needed to give back somehow,” she said.

Another goal for her is to widen the scope of services provided to veterans and their caregivers to include those who served before 9/11 and those who are ill, not just wounded. She also served as a legislative ambassador for the American Cancer Society of Boston prior to winning the fellowship.

The Dole foundation has in place a network of military caregivers called Hidden Heroes, connected through a secure Facebook group where they can ask questions, share stories and support one another. Betty also hopes to expand on this work through a career in advocacy. She started taking classes online and will graduate with a bachelor’s degree in business administration this year, then plans to earn a master’s in health care administration.

“I went back to school because in order to be credible in this human service industry you have to have a degree,” she said.

After he returned home, Kevin underwent another five months of rigorous chemotherapy in addition to regular speech and physical therapies.

At first, his mother helped him with everything from walking to eating, bathing and communicating, but with time he grew stronger and more independent. In less than five years he progressed from wheelchair-bound to walking with help of a walker, when doctors had told her it could take decades.

Because Kevin was on active duty when he was diagnosed, the military covered expenses for the best care available, but that changed after he was medically and honorably discharged.

“The VA is under the impression he doesn’t need the amount of care that he does,” Betty said. “He’s ill, so he doesn’t qualify for a lot of the programs that are military programs.”

She explained her frustration with the Department of Veterans Affairs, the VA, and the complicated process of navigating its health care system. Duplication of services, long waits, and lots of paperwork are some areas she said need improvement.

“The reason why I started going down that road was because it was very complicated,” she said. “The VA is a complicated system to navigate.”

While it still has many shortfalls, she sees the VA’s military caregiver program, which provides stipends to military caregivers, as a step in the right direction. Kevin’s retirement and health insurance still come from the VA, but communication is sparse.

“We don’t hear from the military much anymore,” Betty said. “We don’t hear from anybody from his unit or base.”

An Elizabeth Dole fellow serves for one two-year term advocating for the support of military caregivers and veterans politically, financially and emotionally. About 50 caregivers are chosen each year to be Dole fellows. Their priorities are raising public awareness and advocating for policies that benefit caregivers.

“The reason why I do this is because I don’t want people to go through what I went through,” Betty said.

She said she applied for the fellowship because Kevin’s illness changed her life forever and she wanted to help make life easier for military veterans and caregivers like herself.

“Trying to go through his retirement, trying to, you know, navigate all the things that we’ve had to do, it’s been tough, so I wanted to try to make it easier and better for other people,” she said.

The financial incentives of military service convinced Kevin to enlist, benefits he and his mother rely on heavily to this day. Betty O’Brien spent seven years in the Air Force, and Kevin’s father, Tom, is an Air Force veteran of 42 years.

“At first I didn’t want to, but my dad and my mom were like, maybe it’s a good idea,” Kevin said. “At the time there wasn’t much stability in the economy … It’s like a full-time job with health care, school and dental.”

Both Kevin and Betty live off the stipend they receive from the military.

The Dole foundation also advocated for the passage of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017, which was signed by President Trump on Jan. 22. The bill formed a Family Caregiving Advisory Council to help the Department of Health and Human Services form a national strategy for how to better support military caregivers.

Kevin spent 102 consecutive days at Massachusetts General Hospital, while Betty lived at a hotel paid for by Fisher House of Boston, a charity that provides lodging and transportation for veterans’ families while their loved one is receiving care.

“If it wasn’t for Fisher House I would have been sleeping in my car,” Betty said. “I was there with no money, no financial help at all, no car, nothing, and all the different things I tried to apply to for help through military families we were denied because I didn’t fit the criteria.”

The national Fisher House network has helped more than 335,000 families since 1991, according to the website. Jennifer DeLuca, executive director for Fisher House of Boston, said Betty was the reason the organization instituted the hotel stay program, because a veteran, or those caring for a veteran, should not have to sleep in their car.

“It is the largest piece of our program to date because we have so many military families that are coming into Boston for treatment,” DeLuca said.

To date, the charity has spent over $1 million on hotel stays for military families. Occasionally, Betty and Kevin O’Brien still partner with Fisher House to speak about veteran and caregiver support. 

“She is an inspiration to anyone that hears her speak,” DeLuca said of Betty O’Brien. “She doesn’t make anything about herself. She is always thanking others for what they did. She’s truly an amazing woman.”

Kevin is done with hospital stays for now, but still goes to the VA for dental appointments and visits an oncologist in Boston once a year for follow-up exams. He will never be able to drive due to sight and coordination impairments.

“Going through that whole process, I improved as a person. It gave me a different perspective on stuff,” Kevin said.

Keeping relationships with other veterans is important, Kevin said, because they understand what his life was like before his diagnosis. 

“They can relate to me more,” Kevin said. “They can understand the stories I tell because they’ve lived it.”

With a cat named Khemo, he now lives in his own house in Belchertown just down the road from his mom’s house. She visits every day and spends her time preparing meals, helping with hygiene, doing laundry and cleaning the house.

Kevin keeps busy with household projects like remodeling the bathroom and landscaping to the best of his ability. Worsening tremors in his hands and difficulty balancing make it hard for him to do tasks independently, but he can do basic tasks with supervision. Someday, he hopes to write a book about his experience.

Betty realized she was a lot stronger than she thought, too.

“What happened was terrible but we never let that define our futures,” Betty said. “We knew that God would turn it into something good.”