Over the last few weeks I have been writing about the “one more thing” experience of many special needs parents. The idea that there is always something that needs to be done and in the world of extreme caregiving those “one more things” are often invisible to the rest of the world.
Out-of-home respite can feel like one of those THINGS. For those who don’t know, out-of-home respite are facilities that care for complex children and adults to provide their parents and primary caregivers a badly needed break. Research is very clear that access to generous and reliable respite, both in-home and out-of-home, is one of the most significant factors in allowing families to cope with extreme caregiving demands.
But accessing respite takes a lot of work, time, and preparation. Sometimes it almost doesn’t feel worth it. First you need to book respite which involves an initial intake and filing formal requests for care. These days many children/young adults require respite and there is no guarantee you will get what you need or want. Then when your turn for respite arrives there is significant packing since you must bring all your child’s medical equipment and supplies. But most of all there is the paperwork. One must file medical orders, consents, lists of clothing, and so on. It would take us hours to prepare for a respite admission. And then one needs to transport their child and complete a formal admission. We can never leave on a getaway on the same day we are doing a respite admission or discharge. I can remember being quite envious of people who could just pick up and go somewhere without all the significant advance planning, packing, and running around. However, for all the work it requires, I have always been aware that respite was vital to our family functioning. Hence the blessed one more thing.
We began using respite when Matthew was about three years old. Over the last fifteen years we have used out-of-home respite regularly. When Matthew was his most medically fragile we used respite simply to fill the gaps in available home care nursing. Try as I might I couldn’t stay awake 24 hours continuously and respite services were needed simply to manage his basic medical care. Those times were hard because we often couldn’t use respite for the fun, quality of life, family stuff.
When our kids were younger and Matthew was stable we used respite to allow our family to engage in activities not easily done with Matthew. We would attend out-of-town baseball and ball-hockey tournaments with our eldest. We would take our youngest to Stratford to attend the theatre. We would take our typically developing kids camping, hiking, visiting family, and sailing – activities that are not particularly wheelchair or Matthew friendly. For us, respite allowed us to strike a balance between including Matthew in most of our family life while also making sure our other two kids didn’t miss out on too much. It bothered me that we had to fracture our family at times. But it was our reality and I felt strongly that my other two kids deserved to have family time that did not always revolve around Matthew’s needs.
Sometimes we would use our respite time to have a date – just Bill and me – but sadly with all the pressures on our very limited respite time our kids’ activities usually took priority. Couple time for parents like us can be as rare as hen’s teeth.
This past week, thanks to respite, we had our first real, week-long, couple’s holiday in years. We spent a week with our closest friends in Key West taking in the sights, spending time on the beach, drinking wine, and playing endless games of euchre in the evenings. We keep meaning to learn bridge but the learning curve seems steep! It was a great week and I am grateful for the reliable respite care that allowed it to happen.
As the number of medically fragile children grows demand for respite services is reaching a crescendo and today’s young parents often don’t have access to the level of services we enjoyed when Matthew was younger. Even more troubling is the fact that in many cases once kids turn 18 they age out of most of the available respite services with little to nothing available to replace such care. This despite the fact that the kids are now bigger, often more complex, and parents are reaching a new level of burnout. Yesterday I opened a letter from a local service agency noting that the necessary Ministry continues to opt not to fund adult (18+) respite services. This despite the fact that the most reliable research available tells us that funding respite not only keeps families intact, but actually saves the government money when compared to funding long-term care beds and other associated medical costs for both kids and burned out parents.