She separated her blanket with the precision of a seamstress. She didn’t use scissors or a knife. When I grabbed her linen off the bed and put it in the washer, I didn’t notice what she had done. It wasn’t until I took the bedding out of the dryer that I saw what she had done. She is my daughter, she has autism, she often goes days without sleeping and when she is awake, she destroys things. Last time it was her bathroom and consequently my bedroom ceiling. On other occasions, she has removed the tile from her floor (she already destroyed the carpet), the edges of the carpet on the stairs, sleeves, and collars from clothing, her hair, her eyebrows, some fingernails, and the list goes on and on. I’ve tried staying awake to stop the destruction but that only landed me in the hospital because going without sleeping is dangerous. So, why am I sharing this? I share this because today I read a post where a woman felt guilty about making a decision that would give her a break from day-to-day caregiving of her girl. She needed a break for her self-care. It can be hard to take a break from caregiving, but it’s important to make time for yourself. Caring for a loved one with autism or other complex care needs can be exhausting, and it’s crucial to take time for yourself to recharge. Whether you use that time to relax, do something fun, or simply catch your breath, it’s important not to feel guilty about it. You are deserving of a break so don’t dwell on feelings of guilt.
Respite care can be a great way to get a break from caregiving and when your respite time ends you will return to caregiving refreshed.
It’s also important to remember that you’re not alone in this. I use respite care for my daughter, I need it for my sanity. I need a break. I need sleep. I need time away from day-to-day caregiving to reboot. I have a sewing machine and I will sew the two pieces of my daughter’s blanket back together. While it will never look the same, I must remember that it’s just a blanket. Her bathroom door is locked at night, her closet is locked, her hair and eyebrows may grow back, and I must keep in mind that I can only do so much, as I’m only human.
