One Family’s Journey to Find Respite Care for their Son
posted by: Guest Blogger
Marie Janson faced one of every parent’s biggest fears when her son, Gabriel, was born with Down Syndrome in 2016. New to Colorado and without a strong support network at the time, Gabriel and his family struggled immensely as he was in and out of the hospital for the early part of his life.
“Early on, we really just felt shocked,” said Janson. “We never expected to be in this situation. You try to take it all on as a family and quickly realize you just can’t.”
According to AARP, there are an estimated 584,000 caregivers in Colorado who provide physical and/or emotional care for a loved one with special healthcare needs. Caregivers are highly likely to put the needs of the individual they care for before their own well-being, taking a toll on their health both emotionally and physically. An overwhelming majority of caregivers say they would like more information to help them personally with their caregiving duties, but they don’t always know where to begin.
“I didn’t even know what respite care was until someone suggested it,” said Janson. “When I first applied, I was so nervous because no one had ever watched Gabriel before. Being away from our son for even two hours felt impossible.”
Like many parents, Janson was hesitant to put the care of her child into the hands of someone else. Today, after years of living with the stress of being a mother of three and juggling the challenges of caring for a baby with Down Syndrome, Janson is finally getting some relief. Her family received a respite voucher from the Colorado Respite Coalition, a program of Easterseals Colorado, and they now participate in a variety of community programs focused on respite and support. These programs are invaluable for parents who need a break, but also want to know their children are being cared for in a nurturing and fun environment.
“The time away allows us to get healthy, recharge and reenergize ourselves for our family,” said Janson. She and her husband often use respite to attend marriage counseling and enjoy a meal together. “Caring for a child with special needs can be really difficult on any marriage. Having time to reconnect makes us stronger, better parents to our kids.”
Many Colorado families have a similar story to the Janson family. Whether it’s caring for a child with special needs or a family member with a debilitating illness, caregivers are not always aware of the support available to them. That’s why the Colorado Respite Coalition, Easterseals Colorado and the Colorado Office of Community Access & Independence have teamed up with community partners statewide to spread awareness about caregiving and connect families to resources.
“What we often see is many individuals don’t actually identify as a caregiver, so they don’t know they can ask for help,” said Meghan Kluth, the Vice President of Respite Initiatives at Easterseals Colorado. “Caregivers come from all walks of life and care for loved ones of all different ages. The most important thing for them to know is that they aren’t alone and resources are available.”
Kluth urges families needing support to visit coloradocaregiving.org or call 1-844-265-2372. Each caregiving situation is unique, and different caregivers may need different resources, such as training and education, stress management techniques, access to respite care professionals, support groups or financial compensation for caregiving.
As Janson shared, “Don’t be afraid to ask for help. We can’t control how we became caregivers, but we can seek resources in our communities to make life better.”