There aren’t enough hours in the day for Brandi Lawrey - wife, mother of two and full-time caregiver to her five year old son Gavin.
“He has a mitochondrial disease, and from his mitochondrial disease bases off a lot of other issues. He shakes and tremors a lot and he also has seizures,” says Lawrey.
A constant companion, Lawrey is with Gavin around the clock.
“He usually has most of his seizures at nighttime, so I’m up with him at night as well,” says Lawrey.
A glimpse of her and Gavin shows it’s a labor of love. His personality is infectious, but the tremendous responsibility is affecting Lawrey in unexpected ways.
“A couple of weeks ago I was going to put that last dish in the dishwasher and my phone was in the dishwasher. I had loaded my cell phone with the dishes,” says Lawrey.
Getting 3 hours of sleep on a good night, the sleep deprived Lawrey has caretaker insomnia.
“It is insomnia in a sense that you’re not sleeping, but now there’s another variable, that’s something is keeping you awake,” says Dr. Jose Colon, sleep specialist with Lee Memorial Health System.
Often seen in adults caring for a parent with Alzheimer’s, caretaker insomnia is common in parents of sick children. The condition itself can carry serious health risks.
“Your body gets into a general stress state. This stress state can affect your heart, it can affect insulin levels, it can affect your immune system, you get muscle pain. It literally affects every single part of your body,” says Dr. Colon.
“I can’t stop being Gavin’s caretaker in the middle of the night. I still have to be available to him. So things like sleep medicines; those aren’t an option for me,” says Lawrey.
There are some things that may provide better rest if not more rest: 1: changing habits to signal your body, that you’re taking a break. 2: working in naps. 3: getting someone to cover for you once in a while overnight. And 4: practicing relaxation techniques.
“We’re still working on it with her. We have used some hypnosis. She has family that’s very supportive,” says Dr. Colon.
Lawrey’s hectic pace isn’t likely to change...so she is changing herself.
“I think about hypnosis techniques, think about breathing techniques and I think about things that now associate to me with going to sleep. So I fall asleep much sooner than I did previously,” says Lawrey.
Taking care of herself to be a better caretaker.