Does a Full Life Ahead Include Mom and Dad?



By Katherine Carol

In all likelihood, you have heard from the folks at Full Life Ahead, “Remember to take care of yourself. Take a break.” The importance of respite cannot be overstated. The world of special needs can swallow a parent whole, leaving them with little memory of life before disability.

Aspects of our “special world” are different than many other traditional stressors in life such as work, illness, even the loss of a loved one. Our world revolves around the constant and sometimes unforgiving dilemma of balancing our needs with those of our children as we live with disability through the weeks, months, years and decades.

Most caregivers meet the challenge of getting away with “reluctant eagerness”. It is as if we have to apply the accelerator and the brake at the same time. I know. Each time I take a break, I face this dilemma. Through the years, however, I have discovered that respite is not only a good thing, it is essential for both of my daughter and me. When we don’t create the needed “breaks,” it is easy for us to feel weaker, like we can’t make it without each other. The truth is that renewal and respite are some of the best strategies for supporting our family members with a disability.

When I begin to think about getting away I find myself eager to leave my routine. Since Mikelle graduated from high school, I have been helping run her home, managing her personal care, assisting in organizing her social life and developing her small business opportunities. I feel reluctant to turn over my responsibilities to other support people, however, because I worry about the “what If’s?” and “will she’s?”

Reluctance and guilt enter my subconscious, crisscrossing my dreams — 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, advocate for her care, and negotiate the system?” “Who will take charge?”

Eager to control my own destiny for a while, I know I have to walk the high wire of advocating fragmented human service systems and take flight to catch a glimpse of “me.”   Stripped naked of to-do lists and labels like “Mikelle’s mom,” it is time to stare into the mirror of my soul and remember who I am.

Preparing for travel as a special needs parent is more involved than deciding on which shoes to bring. It involves not just travel plans but contingency plans—the only way to answer those “what if” questions.

Travel preparations include texting 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. The now ancient ritual of notebooks and hand-written to-do lists no longer work. Smart phones and tablets are the answer.

The team and I dissect the schedule two or three times before finding any holes in coverage; we 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 resting snuggly in my hands.

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 knocks on the door of my dreams.

The next morning, 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 and inquire how things are going; I’m always relieved when he texts back that everybody is doing great.

At last, my breath eases and deepens and my muscles warm under the tropical sun. The disturbing dreams dissipate and the dancing begins. Respite finally comes.

I know many of you worry like I do, believing we are the only ones who can skillfully care for our family members. and while that is true, it is also true that other people can care for them for a few days or even a few weeks. The truth is—sometimes our kids need a break from us, too.

Post Script

  1. Although it can be challenging, respite can also build confidence. When providing 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 the confidence that they know they will be cared for adequately in our absence.
  2. New experiences invigorate and restore balance for caregivers, fostering fresh perspectives and personal growth.
  3. I know Mikelle needs her space. For several years, she lived on her own with roommates. It worked well — until it didn’t. We developed a “hybrid approach; she doesn’t live me, rather, I live with her and her roommate providing stability and consistency. Roommates offer more youthful companionship for Mikelle and give me a chance to have some personal time to seek respite. Overnight respite is expensive and having a roommate eliminates this extra expense.

Take a leap, let go and grow.