A recent piece in the New York Times with this title came to my attention. Yes, sometimes it sucks. But there are different types of reluctance for different reasons.
Most of us didn’t plan on being caregivers of children with special needs who may need lifelong care. Though there are a few, such as Family Voices Pennsylvania Coordinator Sue Badeau, who astonishingly adopted up to 20 children with special needs over her lifetime. And now there are even special needs adoption groups such as CHASK (Christian Homes and Special Kids) etc. But most of us didn’t plan this.
Sometimes I’m a reluctant caregiver because I just want to be her mom. I get tired of being a teacher, behaviorist, physical therapist, case manager, nurse, etc. I just want to enjoy my time with her.
Sometimes it’s because I’m just tapped out with round the clock care.
Or I don’t want to go to the hospital out of state, and live apart from my husband (who goes to work during the week) for who knows how long, again.
Or physically, emotionally, mentally weary of the constant changes, lifting, medications, paperwork, insurance denials, treatments and deciding if it’s safe to maintain her at home or do we need to go to the E.R., and what if I guess wrong? I’ve literally gotten her to the hospital with no other signs than “something is wrong” within hours of a major hemorrhage that put her in ICU for 4 months.
Life isn’t even what passes for normal around here anymore.
But then I think what it must be like for her. A recent article indicated that children can actually suffer PTSD (Post Traumatic Stress Syndrome) post hospitalization. Another showed that 1 in 3 (even adults) suffer PTSD after being on a ventilator, like she was.
I noticed a difference when she came home. She didn’t feel safe even though we have a baby monitor on. We had to get bedrails and we have a whole bedtime relaxation routine now. We do massage, Reiki, Qigong, and read poetry. She has both soothing music and a sound machine of falling rain on all night. She does word search puzzles for hours until she falls asleep. And she sleeps with the light on.
What must it be like to have to depend on someone to hear you even if you just need a glass of water? What if you can’t get to the bathroom and need help? Or are hooked up to things like IVs, Foleys, PICC lines/Broviacs, IJ’s/Medcomps and can’t move? Forget the scary and painful stuff that goes along with illness. And not know what to expect or when (4 a.m. labs anyone?)
Just think what it must feel like to depend on other people for things you used to do for yourself.
When your child acts out, just remember the most likely they can’t help it. My child’s behavior is the worst when she’s in pain, on TPN (total parenteral nutrition through her veins) and can’t eat for 5 months, or frightened etc. Their behavior is how they’re communicating. They feel like they have no control over anything in their world.
And maybe that will help you not be “The Reluctant Caregiver.”
“The Reluctant Caregiver” NYT
PTSD in Children with Complex Medical Needs-Complex Child magazine
Ventilated Patients and PTSD-Medical News Today