Private duty nurses, families continue to struggle with worker shortage
DOVER, Del. – About a year and half ago, 47 ABC reported on stagnant Medicaid reimbursements and the worker shortage spurred by COVID-19. Those two factors came together to create a perfect storm of struggle for families who rely on private duty nurses. Since then, those Medicaid reimbursements haven’t budged, and COVID-19 is still making it more difficult to have enough hands on deck.
Ben Knapp is described by his mother, Cindy, as a talented musician and athlete, a gifted student, and well-loved by his community. “He was very involved at Dover High School. He was a sophomore, and was in all AP Honors classes. He did really well in school,” said Cindy. “He was kind of one of those all around kids. He got along with everybody, everybody loved Ben. He’s very easy going and very fun.”
A New Normal
Cindy says Ben was a perfectly healthy 16-year-old when he suffered a major cardiac arrest, causing a severe brain injury. Ben was traveling with his father, and staying the night at a hotel when it happened. “Ben was making noises in the night, and when [his father] turned the lights on, his face had gone gray. They immediately started performing CPR. It took a very long time for the ambulance to get there,” said Cindy.
Ben would live in the hospital for the next five months, as his family remained unsure of how the brain injury would change his life. Fortunately, Cindy says Ben’s infectious smile and happy-go-lucky character didn’t change with the injury. However, Ben was left without the ability to walk, talk, see, or eat without a feeding tube.
Cindy says adjusting to this new normal wasn’t easy. She works full-time, and her husband does as well, while Ben requires round the clock care. “Dinner is hard to make, laundry is piling up. We just don’t get to do the things we need to do to function as a family. When the nurses are here, it gives us that break,” said Cindy.
Great Need, Little Availability
Ben’s private duty nurses and home health aides play a crucial role in making sure the Knapps can continue to live, and thrive. They often accompany the family to Ben’s health appointments, and provide a watchful eye through the night. “We want our home to be filled with joy and laughter. It is, but I don’t think we would be able to accomplish that goal and keep Ben’s life as normal as possible if we didn’t have that help,” said Cindy.
But, because of the shortage of private duty nurses and home health aides, the Knapps were left struggling to find people to cover shifts. “We went for months and months not having any help in the evenings. So, we have a day nurse that comes from 7 in the morning until 5 p.m. I’m just getting home from work then,” said Cindy.
Cindy says she understands why many in the field have left for better paying jobs. However, that gap has left the Knapps in a difficult situation. “We have had somewhat of a revolving door with some of the nurses and aides. It’s very difficult on our families when we lose a nurse,” she said. “It really is hard for Ben because it takes a long time for them to learn how to communicate with him. So, if we have to keep training new nurses, it does cause stress on our family.”
However, private duty nurses and home health aides aren’t just crucial to every day health care in the Knapp home. Cindy says they’re members of the family, too. “When you have that support, you feel better about yourself. You feel like you can be there for your child, and just have more of a normal family unit,” she said. “They do become part of our family. They’re in our home all the time. They interact with all of our family members, not just Ben. Our daughters have gotten really close to some of the nurses.”
400 Miles Per Week
On the flip side, things haven’t gotten any easier for the nurses and home health aides, themselves. Cheryll Tice is one of those people who works day in and day out to care for others. She says she starts her day around 10 a.m., not getting home until about 11:30 p.m., and driving about 400 miles per week just to be there for her clients.
“People are spread all over the state. So, it’s kind of hard with the schedules to get somebody back to back,” said Tice. “Sometimes, you’re the only person that they ever get to see. It’s really important. They need home health care that they get it.”
“My family members”
Before Tice took on the role of a home health aide, she says she worked in the food service industry for about seven years. That changed when Tice saw the help that a neighbor with Multiple Sclerosis got from the aides in her home. “I never realized how much help she needed,” said Tice.
Now, Tice juggles a number of clients with a variety of needs. And for her, the job is personal. “That’s the way that I think of my clients; as my family members. Do I want them to feel like this? No. I want to make them feel wanted, that they are human,” said Tice. “I enjoy going to people’s homes and helping out. I never wanted to work in a facility because when I did my clinical, the people in the nursing homes always said ‘I just wish I could be with my family.'”
More Hands Needed
Tice says while she does everything she can to provide essential care to her clients, she often walks into situations where a nurse or aide hasn’t visited the home in hours. “You’ll find people laying in a soaking wet bed, feces. It’s really sad,” she said. “You want to help them as much as you can. And, of course, they’re upset. So, you’re trying to calm them down, trying to make them feel comfortable.”
That’s why Tice is hoping to see Medicaid reimbursements brought up to speed. She says that will potentially drive wages up, and hopefully attract more qualified aides who can make a living wage doing what they love. “It’s not a hard job. But, it does take somebody special. It really does,” said Tice. “You’ve got to go in there knowing that you’re caring for that person, and you’re trying to make their life a little bit better.”