It has taken seven years, the age of my oldest son Charlie, who has cerebral palsy, to work out a reasonable respite care system for our family. But we have finally done it, at least for now. It will change as the needs of our family shift. I cannot foresee whether Charlie will ever no longer rely his wheelchair or how much he will weigh when he is fifteen and if that is the magic number that I can no longer lift. But I do know we will continue to need breaks from each other, both for my sake and his.
Regardless of where your family is in its life stage, here are a few tips I have come to rely upon as I plan respite care:
1) Get over the guilt
This was the biggest issue for me and the longest deterrent in taking advantage of the relief that was offered. I felt terrible leaving Charlie with anyone but me. Early on, this made sense. In his first few years, he had a tracheotomy and g-tube and was prone to seizures. But later, even when the trach and g-tube and seizures ceased to exist, I still couldn’t let go. I couldn’t imagine anyone taking care of him better than I could. And so when my husband and I did manage to sneak away for a few hours, I was riddled with worry, constantly checking my phone, and therefore, barely present for the “break” this was supposed to be.
Here’s the thing: no one is going to take care of your child like you do. But if you want to keep doing that great job, you need to step away. No one trains for a marathon, runs a marathon, and then keeps running. You run and then you recover. So let yourself rest without guilt.
2) Don’t wait until you breakdown
See note above. You can’t keep running that marathon. And time off isn’t going to give you the rest and rejuvenation you need if you are so broken down in mind, body, and spirit that you are entering your respite time in survival mode.
Plan these breaks before you are exhausted and make them regular occurrences instead of S.O.S’s. We have a monthly “Special Saturday” at a local church where we drop the kids off for a few hours on a Saturday morning. We also have a quarterly “Respite Night” where the kids go, watch movies, and eat dinner in their pjs so we can dine at an actual restaurant with napkins that are not paper and no one to spill food on me but me.
I build in other breaks when I can, hiring a babysitter or bribing a grandparent, when I need extra time. But knowing I can rely on the consistency of “Special Saturday” and “Respite Night” gives our whole family something regular to look forward to.
3) Plan your time
This is key! The first Saturday that my husband and I dropped the kids off, we were so giddy at the idea of freedom on a weekend that we drove all the way downtown attempting to both get a nice breakfast and also catch the newest art exhibit at the museum. It was too much in two hours and we ended up frazzled, rushed, and stressed. Since then, we have learned that less is more – go out to breakfast OR catch the street fair/art exhibit/matinee. You can’t do it all so pick your favorite and embrace it.
Other suggestions:
- Exercise – Sometimes self-care looks like going for a run or long walk in the woods or booking a yoga class. There’s something to be said for those feel-good endorphins.
- House work – I know, it sounds terrible. But if your laundry pile is higher than your head or the winter clothes need sorting or the trees need trimming, it’s nice to do that in peaceful aloneness.
- Nap – I don’t know about you, but a decent power nap or reading a great book in bed until I doze off and then having no one wake me, but me, is wonderful. If exercise and house work aren’t the break you need, then a nap is always a good time.
- Take up a hobby – I love to knit. But I never have the time to go buy the supplies and sit long enough to make that scarf/blanket/hat I’ve been dying to make. Respite is designed for just this sort of thing. Using your creative side is part of giving the rest of yourself a break. Take a cooking class. Pick back up that paintbrush. Read the book for book club. Do something the feeds a part of your soul that otherwise sits untouched.
- Make a date – While I do love dinner out on the town with my spouse, this doesn’t have to be a date night or even with a significant other. Meet a friend for lunch or coffee or catch a movie or check out a local antique store. Do something fun with someone else who is not your child.
4) Keep trying
It’s not always going to go perfectly every time. Maybe your child will not click with the caregiver or maybe you won’t. Maybe, like me, you try to do too much in too small a space of time. Maybe the local organization you thought would give you that regular break stops offering respite. Or your favorite babysitter moves. Whatever the case may be, keep searching for the right fit for your family. It can take time and trust on your part, but it is so worth it in the end because it makes you better at not only caring for your child, but also caring for yourself. Sometimes you need to be your own advocate too.
Jamie Sumner is a special needs mom and author.
Discover her new book, Roll with It.
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