Reluctant eagerness. Yes, those two words capture my dilemma each time I take a break from being a “special needs mom” and caregiver—if there is such a thing. Respite is good for both of us.
On one hand, I am eager to leap out of my routine. Since, Mikelle graduated from high school, I have been helping Mikelle run her home, manage her personal care, assisting her in organizing her social life and develop her small business opportunities. There is a chorus of reluctant eagerness to each day, each minute a note in life’s melody.
I am eager to sing my own song, dance to my own music every now and then. The importance of taking a break hasn’t escaped me. Lessons are sometimes learned the hard way, I know the consequences of burnout.
Reluctant, I know pulling back for a week or two from the relentless presence of advocating for Mikelle and fighting for support services to move out of the 20th Century allows me to capture a snapshot of the real me, not just the vigilant “me” who always sleeps with one eye open, an ear tuned toward Mikelle’s room and the “me” who walks a thin tight wire of stability knowing it could shake me off at any moment. I am eager to control my own destiny for a while, choosing to leap off the wire for a while, take flight, catch a glimpse of “me”, stripped naked of to-do lists and labels like “Mikelle’s mom”. I need to stare into the mirror of my soul and remember who I am.
Reluctant, guilt slips into my thoughts crisscrossing my dreams as I hear her calling and can’t find her, the harder I search the further away she sounds. Questions drip like the morning coffee, waking me up with a start. “Will she be okay without me?” “Will everyone show up on time?” “What if she becomes ill and I am out of the country?” “Who will take her to the doctor, argue for her care, and negotiate the system?” “Who will take charge?”
I text copies of Mikelle’s insurance information to my son, Kasey, to Taylor, Mikelle’s former roommate, to Ashley, her current roommate and Desi, her Friday night personal assistant. I realize the ancient ritual of notebooks, to-do lists no longer work. Everyone uses their smartphone for everything and are never without it.
The team and I dissect the schedule two or three times before finding the holes in coverage and patch them up with more texts. “Desi, can you cover this time and that time?” The days before a trip are long and full of preparation. It is after 11 PM as I crawl into bed, a warm cup of tea rests snuggly in my hands, winter waits on the ledge.
Another fit of the “what if’s” seizes my twilight. “What if someone has an accident on the way to Mikelle’s?” “Who will fill in, change their schedule and make it work like I do?” ”What if Mikelle becomes ill?” Reluctance fills my sleep.
The trip is just a day away, eagerness floods the kitchen like warm sunshine as I continue to prepare for my departure. I am excited to join my friends and check off one more item on “the bucket list”, although, I prefer to call it my “discover list.” My destination is South America. I am captivated by its culture and the love of dance. First Tango, then Salsa.
Mikelle is eager to have me go, relishing the idea she and her girls don’t need me, until the moment I leave.
As I grab my bags, Mikelle’s neck stretches upward like E.T. Her dark eyes dart from behind her red framed glasses to the suitcases, realizing my departure is eminent. Reluctant to see me go, she fights the urge to head me off at the door. Taylor and Ashley assure her. “Hey, Mikelle, it is party time.”
It takes several days until the dreams dissipate. I text my son. “How are things going?” I ask. He texts back, “Everybody is doing great.”
My breath deepens, my muscles warm under the Colombian sun, the disturbing dreams go away and the dancing begins. Finally stealing a moment of true respite.
Post Script
- A challenging as it is, respite can build confidence. When providing such intimate care for someone we love, we can become dependent on each other and lose our confidence. For parents, it is the confidence our children and caregivers can live without us even for brief amounts of time. For the people we care for, it is important they know they can be cared for adequately in our absence.
- New experiences invigorate us and restore balance for caregivers fostering fresh perspectives and personal growth.
- I know Mikelle needs her space. For years, she lived on her own with roommates. It worked well until it didn’t. We have developed a “Hybrid” approach. She doesn’t live me, I live with her and her roommate providing stability and consistency. Roommates offer a more youthful companion for Mikelle and give me a chance to take trips. Overnight respite is expensive and having a roommate eliminates this extra expense
Take a leap, let go and grow.