Family Caregiver Spotlight: A parent of a child with disabilities on the importance of connection
Jeff Cogswell, sales consultant at LifeLoop, likes to say he’s in the “Sandwich Generation.”
By this, he means he plays a care-giving role for both a parent and a child. His mother has Alzheimer’s, and his son, 21-year-old Keathen, has profound developmental disabilities.
“Keathen has quadrispastic cerebral palsy from a brain bleed he experienced when he was just a week old,” Jeff says.
Keathen’s condition makes him unable speak, or to manage ordinary activities of daily life, like dressing, eating, or hygiene. Jeff and his wife, Amy, have to perform most of these activities themselves. It can be challenging, but Jeff and Amy treasure their relationship with their son. They consider caring for and being with Keathen to be one of the great blessings of their lives.
So, in honor of National Family Caregiver’s Month, we wanted to explore Jeff’s perspective on what it means to care for someone — and why Jeff’s experience with caregiving makes him such a passionate advocate for LifeLoop.
The mystery of KJ’s day
Jeff calls his son KJ. Like any parent, Jeff wants to feel close with his son, and know a little of what he’s up to.
But while Jeff is at work, KJ goes off to a caregiving facility for adults with disabilities. Because KJ can’t speak, he can’t relate any specifics of his day.
“We can’t ask him what happened. But I still want to know: how was his eating, did he have a good day or a bad day, was he fussy, was he happy or not?” Jeff says.
KJ’s facility tries to document his activities, usually by filling out a book that Jeff and Amy put in KJ’s backpack.
The facility’s staff, however, isn’t always able to fill the book out. They’re busy caretakers — they don’t always have time, or the paperwork occasionally gets overlooked. Once in a while, Jeff and Amy even forget to enclose the book themselves.
“LifeLoop would be a lot better,” Jeff says, “because everyone has their cellphones all the time. If KJ’s facility had it, we’d know what was going on with him, day-to-day. That’d be invaluable to us.”
This is an impulse most parents are familiar with, and parents of non-disabled children have quite a few options for keeping track of their kids’ activities.
Jeff is all too aware of that. “Every parent wants to know what’s going on with their kids. KJ has a twin sister, Kennedy, who’s in college, and if I want to watch what she’s up to, I can just follow her around on social media,” he says. “I don’t have anything like that for KJ.”
Disabilities are different
To readers of this blog, the solution might seem obvious: LifeLoop! The activity documentation software could certainly help Jeff see what KJ does during his day.
In fact, it might seem like LifeLoop would be a great match for younger, disabled adults. Unlike seniors, many of them grew up exposed to iPads and smart-phones for their entire adult lives. A digital solution would be a natural fit.
Jeff points out, though, that caring for this population comes with certain constraints. He explains that disabled-care facilities tend to be very restrictive about staff using cell-phones. That makes them wary of using tools that partly rely on phones to function.
“Another issue is funding,” Jeff says. “For elder care, paying in cash is pretty common. Then Medicare comes in to cover what families can’t settle with their own money. Disabled-care is different. Medicaid is the first payer for the disabled population, and that changes everything.”
Medicaid’s coverage is more limited than families’ private contributions, and as a result, services that are perceived as “extras” often go uncovered.
The little things add up
Jeff doesn’t see them as an extra, however. He’s seen first-hand what a difference it makes when he knows even the most basic facts about how KJ spends his time.
He gives one recent example:
“One day KJ’s group went bowling. We only knew he went bowling because we had to sign a permission slip for the trip,” Jeff recalls. “But the result was when he got home, we got to ask him about it— ‘Did you bowl a 200? Did you bowl really well?’ — and he just lights up. He’s animated and eager, he can show us his excited feelings. It’s really great.”
Just knowing one detail about KJ’s schedule helped spur an important moment of connection between Jeff and Amy and their son.
Paving the way
Jeff immediately sees the parallels with care for older adults.
“It’s just like with dementia,” Jeff says. “Without prompting, the communication isn’t always there. But if I can trigger the conversation, if I have a way to get it going, so much happens after that!”
To Jeff and Amy, it was the difference between reading about KJ’s experiences, and experiencing something with him.
“And if we had LifeLoop, the opportunities for shared experiences like that would be a lot more consistent. Maybe every day. That would make a big difference, I think,” Jeff says, “Would make us feel a lot closer.”
Creating that consistent sense of connection is what LifeLoop is all about. And while, for the time being, it doesn’t fit in KJ’s life quite yet, Jeff is optimistic that it ultimately will.
“As both a caregiver and a consultant, I’m an advocate,” he says. “I’m proud to be bringing these ideas into the adults-with-disabilities space.”