Steve and Kim Brown’s love story begins at the back seat of a school bus on the way to the Burlington County Institute of Technology (BCIT).
“We ended up sharing it,” Kim recalled with a laugh.
Kim had just moved to Southampton with her family from Marlton and was attending BCIT with a focus on graphic design. Steve grew up in Mount Laurel and also attended BCIT to focus on auto body.
They began dating after Steve decided to yell out that bus window.
“I was telling a friend that Rob had asked me out today,” Kim remembered. “He was yelling to tell him that we were together. I started laughing. He was yelling.
“He was serious.”
It was junior year of high school – and that was it. Steve and Kim graduated from BCIT in 1982 and the following year – at just 19 – the high-school sweethearts married, settled in Tabernacle and went on to have four children and four grandchildren.
The couple enjoyed a vibrant life together, with Steve working at the same auto body shop where he started in high school. They traveled the world and built a family. But it wouldn’t be until decades later that their wedding vow of “for better or for worse, in sickness and in health” would become much more important.
In 2016, Steve received the devastating diagnosis of Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, a fatal illness that causes the progressive loss of motor neurons in the brain and spinal cord. At 51, he was told he would die in two to three years.
“Nothing prepares you for such an awful situation,” Kim recalled.
She didn’t know much about ALS except for the ice bucket challenge that went viral in 2014. The diagnosis would send most people into a long-term care facility or nursing home, because ALS is extremely aggressive and often requires a tracheostomy and ventilator, necessitating round-the-clock care.
But for Kim, caring for Steve anywhere but at home was never an option.
“The best medicine for anyone is to be able to stay at home,” Kim maintains, noting her husband has a device that allows him to communicate with his eyes and can slightly lift his left leg. “Putting someone in a hospital or nursing home makes them feel thrown away or discarded. That’s something I could never do.”
The couple will celebrate their 42nd Valentine’s Day on Friday. Kim says that’s because home care has helped her husband beat the odds thus far and enabled them to continue celebrating milestones together.
“If he was anywhere but home, he would have died already, because of both the mental and physical toll it would take on him,” Kim explained, adding that since his diagnosis, Steve has been in the hospital twice. Both times, she made sure she was by his side.
Nearly nine years after his diagnosis, Steve requires 168 hours a week of extensive in-home care with a rotating team of health aides and nurses who keep him comfortable and cared for at home. They help Steve with everything from managing his trach and vent, to overseeing his medications, bathing, feeding and dressing.
The home-care team, Kim says, has become family.
Thanks to that personalized service, Steve not only gets to see his kids and grandkids and live his life surrounded by everything he loves most, but Kim is also able to work a full-time job with the Tabernacle school district to pay their medical and everyday living expenses. Otherwise, Steve would need to be put in a facility or Kim would have to quit her job – neither of which was an option for her.
But home care doesn’t come without its challenges, namely finding enough caregivers to cover all the hours of care needed. Home care doesn’t receive the same policy prioritization or funding as hospitals and nursing homes, according to Kim. Aides, nurses and therapists in home care can earn much more money doing the same work in facilities. That has created an extreme workforce shortage in the home-care space.
That’s why there have been times when Kim has struggled to find enough care coverage. Without it, she would have to take on the full-time job of caring for Steve exclusively on her own – a nearly impossible task with a school job that requires her to work from 7:30 a.m. to 3 p.m. five days a week.
Despite the challenges and toll of Steve’s diagnosis, home care is everything to the Browns, and Kim hopes that by sharing her family’s story, she can help at least one person.
“The most important thing to me is that he’s home,” she says. “I stood before God and vowed for better or for worse – and we don’t get to choose the worst. I wouldn’t choose anything differently, because he’s my everything. I would never let him out of our home.”
Last year, the Brown family was able to take a vacation together, a cruise to Orlando, Port Canaveral and Bahamas with their home-care team of nurses. Steve was able to keep his regular routine throughout the trip because of them.
“It really wasn’t about where we went,” Kim recounted, “it was about being able to.”
