As a Rett syndrome caregiver and parent, I find self-care to be vital
A solo trip granted this mom some much-needed rest and decompression
Summer is always hard on me. I don’t get much respite with a daughter who has Rett syndrome. Summer school is only three hours a day for five weeks, so my body and mind don’t get much of a break from being Cammy’s caregiver.
My husband has always been very good about self-care. During the summer, he golfs regularly, including for charity events, and plans trips with friends.
While I excel at taking care of others, I’ve never been great at self-care. I’ll take our two girls on outings or plan a staycation for the three of us at a hotel so my husband can relax and get some sleep without waking up to Cammy’s feeding tube or oxygen machine beeping.
In July, I felt myself slipping into depression, a place that’s very easy for me to go. When Cammy would head off to summer school, I’d go back to sleep. I wanted to be in bed all day. Needing to care for my girls is the only reason I’m able to get out of bed when I’m sinking.
I finally reached my breaking point and told my husband I needed to get away for a few days. This was the first time I’d asked for help in taking care of me. He didn’t hesitate. Soon, he had a flight and hotel booked for me. He scheduled a few vacation days at work so he could stay home with the girls while I took a trip by myself to decompress.
I didn’t want to go with anyone. I didn’t want to be responsible for anyone, make any decisions, or be on a schedule. Decision fatigue had hit me hard and I needed a break. I didn’t want to hear any medical machines beeping. I couldn’t bear one more appointment, insurance phone call, or scheduled anything. I needed someone else to take Cammy to the dentist, get her ready for freshman orientation, answer a hundred questions about her needs, and fill out endless forms. I just needed a break from it all.
So I went to Las Vegas.
The first night, I actually slept. My brain wasn’t on overload, waiting to be awoken by Cammy gasping, coughing, or moaning, or a machine beeping. I can’t remember the last time I slept that hard for 10 hours without interruption.
Over the next couple of days, I did what I wanted, when I wanted. I got a massage, met lovely locals playing bingo, and went to bed at 9 p.m. each night. It wasn’t the Vegas trip most people might imagine, but it was exactly what I wanted to do.
I returned three days later refreshed. Caring for someone 24 hours a day is mentally, physically, and emotionally exhausting, and my Vegas trip was just the reset button I needed. It reminded me to prioritize my own self-care as a caregiver — though that’s easier said than done. I’m grateful to have a husband who helps me take care of me.
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