As a social worker at George Mark Children’s House, a palliative care facility for children with life-limiting illnesses, I see the relaxing and joyful benefits of Respite Care every day.
Respite Care provides parents and primary caregivers with a safe, nurturing place to bring their children for care while they take a temporary break from their nonstop responsibilities and rejuvenate. Life-limiting illness forces the entire family to literally live one breath at a time, every minute of every day. Each day parents wonder about their child’s medical condition, and how they will wake up each day.
Parents tell me that their daily routines begin with suctioning their child so they can breathe, and then preparing the machine for their child’s liquid feeds, which must be mixed right before using, and while their child is having breakfast they begin to get their other children ready for school. Parents spend the rest of their morning and sometimes afternoon contacting insurance and various medical supply companies for approval. Because of their illness and pressures on the family, chronically ill children may be socially isolated and benefit from the opportunity to venture into a new, safe environment.
“Sophia” and her family flowered under Respite Care. The first time Sophia – age 8 – and her mom visited George Mark, they came for a tour so that they both could become familiar with the place that Sophia’s mother hoped she would come to be cared for while the family went on a vacation. Sophia has cerebral palsy and epilepsy with limited sight and hearing, and due to her health decline, she is no longer able to travel. So rather than have a stay-at-home vacation like they did last year, this year Sophia and her family had their own respective vacations.
After the tour, comes the first overnight prior to the Respite stay. Mom stayed with Sophia, in a guest room adjoining Sophia’s, so that they could both continue to become familiar with George Mark and our staff – including our nurses and physicians along with the psychosocial team and volunteers. As we began her admission, “Maxie” a pet therapy dog came in for a visit. Sophia laughed for the first time as she pet the dog gently. Soon Sophia was “walking” Maxie, holding his leash as her wheelchair buzzed down the hall. While Sophia played, mom wrote down Sophia’s daily schedule and likes and dislikes.
By the time Sophia actually came for her Respite visit, both she and her mom were comfortable with George Mark and familiar with the staff and volunteers who would be caring for her. Our Child Life Specialist and Social Worker used information provided by Sophia’s mom to develop an individualized plan as we do for each patient. In between Sophia’s scheduled medical treatments, staff aided by our trained volunteers, were able to introduce familiar self-esteem building activities.
When Sophia reached the gate to enter George Mark, she began to grin and laugh. Like many of the children who come to the house, Sophia communicates by making sounds, facial expressions and sometimes by using sign language that tells us when she is happy or sad or if she needs something. In addition to bringing some of her favorite toys, Sophia had family pictures, recorded messages from each member of the family, and a blouse of her mom’s to help when she begins missing her.
During Sophia’s stay, the music therapist visited and Sophia joined the group already in progress. As the therapist Lauren led the group, the participants learned how to follow different rhythms and to follow Lauren when she changes rhythms.
Sophia’s family returned a week later from visiting relatives out of state and joyfully reunited with Sophia. Both Sophia and her family were able to try new rhythms and returned to each other replenished, and wonderfully in synch after her Respite stay.
About George Mark Children’s House
George Mark Children’s House was founded in 2004 as the first freestanding, independent pediatric palliative care facility in the United States. George Mark provides life-enhancing medical care and family support for children with illnesses that modern healthcare cannot yet cure, and for those with complex medical conditions.