The term "respite" is thrown around a lot in the disability community. What is respite?
The short answer is that respite is a break or time off. When referring to the disability community, it is often referred to as time off for the primary caregiver (usually the parents). Everyone loves the idea of respite, but the reality of respite is not simple.
There are many organizations that offer free respite programs to families with children that have disabilities. Typically, the way it works is they have a time, date, and location where families can bring their children and leave them for a few hours.
For many of us, this is great!
Some children are able to go into a generalized group and do just fine. However, for some of us, this is simply not an option. Our children have complex medical needs and require trained, one-on-one care.
For us, it would have taken weeks to train a nurse on Casey’s needs to the point that we felt we could get some sleep, run errands, etc. Even after a nurse was trained for Casey, there were some days that it required multiple people to manage her needs. Respite for us looked very different—and was a lot harder to come by.
We needed nurses during the week to help me with the day-to-day care of Casey while Tim worked. Then we had nurses who would come overnight to manage Casey’s needs so that we could get some sleep. Finding additional nursing hours on evenings and weekends to take time for us was the lowest priority. The other hours were always filled first.
On occasions, one of our nurses would be able to stay late or come in for an extra shift to provide us with a little respite. If Casey was doing well and all the stars lined up perfectly, it was a great day and we loved those respite moments. As Casey got older, bigger, and more complex, she required more care. The more she needed, the less respite we could schedule.
We would have appointments with different specialists or our waiver appointments and without fail, they would ask us if we are getting any respite. I would always answer the same: “As much as possible, sometimes we just can’t seem to make it happen.” They would tell me how important respite is and that I need to make it a priority. I wonder if they knew that lecturing me on not getting enough respite only added to my stress, making respite that much more needed?
In a perfect world, I would have all our primary day and night shifts covered as well as multiple respite shifts each week. In my real world, the idea of leaving Casey at home with just a nurse was often very stressful. Even nurses that knew her and were great with her would cause me stress. When Casey was having a bad day, things could go from fine to devastating in minutes. Knowing that toward the end we had as many bad days as good, if not more, the idea of leaving her without a full team of people to manage her needs was more than I could handle.
I still needed respite and time to recharge, but I had to find new ways to do this.
Early on, respite was leaving Casey with a nurse while we went to lunch or took a walk. Over the years, our respite was less and less out of the house and took on a very different look. Respite became walking into my room and closing the door for 10-30 minutes (but being where I could rush back to Casey’s side if needed).
Your respite needs may not fit the standard idea of respite. Find what works for you and your family.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.