A family recently put together the capital to buy a van to transport their 12 year old son who requires complete care. The van came equipped with a lift and more space for his motorized wheelchair. They were delighted to have new freedom to get around town and to his appointments with less effort. The van also meant they could hit the road to visit family.
Imagine you are on the road with your child and you need a pit stop. It might be awkward to take your young son into the Ladies room, but it happens when they are small. If your son is 12, they can generally manage on their own, with clear instructions about where to meet and an assurance to wash hands when he is done.
But if your 12 year old son is not independent, and you are traveling alone, what happens then?
This mom's solution: a Cabelas porta potty for the van.
Brilliant. And, what a poignant reminder of the creative thinking, resilience, and unimaginable planning that is required to care for a child with significant needs.
The porta potty for road trips also seems to me an apt metaphor for the nonstop life of caregiving.
This story got me thinking, once again, about respite care. My patients mention the lack of respite care all the time. Most often it comes in an off-handed comment about how long it has been since they had dinner together, saw a movie, went dancing. One mom recently said, "I just want a couple of hours to go to Lowe's with my husband. I'm so tired of trying to pick out paint with FaceTime."
Respite care is a necessary kindness in the life of constant caregiving.
Who has not faced the dilemma of finding a sitter when you really need one? Now imagine if your child has a tracheostomy, receives g-tube feedings, or needs a diaper change when he is 12 or 20. The pool of sitters suddenly gets a bit smaller, and the risks of leaving your loved one loom larger.
One small solution in my world comes in the way of undergraduate nursing students. Our School of Nursing maintains a list of families needing respite care. The students contact the families directly and work out the arrangements. Frequently, the families grow close to the students and follow their progress through school. It is a stopgap measure for sure--one more piece of the caregiving puzzle.
Not long ago, I visited a number of pediatric hospices across England. Each health district in England has a pediatric hospice where families can utilized respite services. For some families this makes a vacation possible, or a short trip for a family wedding or funeral. This seems such a sensible pubic service that respects and supports the family caregiver.