Caregivers: Sharing the Care (part 1)

Do you ever feel that you’re in a state of suspended animation?

No matter how many commonalities caregivers have, in the early hours of the day or the late hours of the night when your loved ones need bathed, fed, dressed, toileted, calmed,  cared for, you are pretty much alone. When they need help getting to the doctor, going through the bills, taking medication, you’ve been pretty much by yourself. I know. I was there for nineteen years.

Even though Caregiver Action Network  statistics show “More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year,” as indicated in a 2009 report,  a Caregiver.com article by Kathy Bosworth notes that the majority of caregivers  are  “going it alone.”

“The stress of going it alone is dangerous to your health,” National Council of Certified Dementia Practitioners states in their Understanding Caregiver Stress Article.

Professor Marvel and Dorothy

Professor Marvel and Dorothy

That means we’re it—unless we find, ask, or pull assistance instead of a rabbit out of Professor Marvel’s hat. 

My assistance came in the form of Development Homes, a group home in North Dakota. Katie and I jumped into the tornado of change, left husband/father back in Colorado, and landed in Midwest-land, otherwise known as Grand Forks. My good witch of the north wasn’t Glinda, it was Tanya—Katie’s nurse at Development Homes, someone who took Katie’s health and best interest under her wings.

Transitioning from living at home to living in a group home for Katie was an adventure. It was more interesting, more stimulating, more consistent in medical care. It was a horse of a different color and she began to thrive—slept through the night, fewer doctor’s visits, and more magical mastering of day to day challenges.

I broke out in hives.

Trusting others with the care of a loved one is scarier than a pack of flying monkeys, whether it’s for an evening, a weekend, or longer. The emerald lining, for me, was that I went from primary caregiver to being part of a team of caregivers. Still, the very idea of sharing the care in of itself can sound insurmountable.

It seems like more work than it’s worth—additional stress. There is one obstacle in particular that I had, and have heard from others, that keep us from reaching out: Who.

Who do you trust? Nobody can do this as well as you, right?  Valid statement. But since cloning is out, for now the best solution is training.

Stay tuned for sharing the care tools…

 

Beneath the Surface of Normal: A Mythical Memior

Anomaly

Anomaly

I am swimming, skimming the jeweled plane of the ocean with indifference toward what lies beneath. My arms reach and pull and lift against the dense drag of salty resistance. Alternately, my hands drip glistening beads of water, arc into the air, and submerge again stroking, stroking forward. With firm hip and level knee, I kick—an unconscious rhythm propelling me until my fingers brush against something below the surface. It is leathery, like the belly of a shark.

My heart races.  I draw my knees into my chest and glance toward shore. It is dry and distant and I am far out in the heaving womb of the sea. There is no where to run.

I plunge my face underwater to meet the future head-first. My eyes prickle when I open them up to a world I can survive in only beyond one breath of my fantasies. The aqua marine world fades into midnight dreamscape.  I scan this saturated horizon, spinning slowly. No jaws, no fins, no twelve-foot predators stalk me from the deep. It is oddly peaceful. Then in the din of sandy distance, I glimpse her.

She’s bewitching and strangely familiar. I squint past the conventional schools of trumpet fish and herds of sea horses into unthinkable. She appears an inhabitant of a mythical world where Neptune’s children wear oyster pearls about their wrists and curl up near the roots of seaweed. I am captivated, unable to turn away.  I cannot help but follow her deeper into the depths to see her more closely.

She turns to me as a sunken shaft of sunlight illuminates her form.

She is amphibian in nature, kindred to a human. Her eyes look into mine with a gaze both indistinct and intimate. She begins to sing a melody my ear regards—one that taps a note of awakening in my blood, a music without lyrics, a siren’s tune that echoes through the tides and implants itself within my gut. I am rapt.  Suddenly, realization stings me like a jelly fish. I know her.

Stale inhalation burns my lungs.  I exhale, choke, gulp in lungfuls of gritty water. I need air.  Bubbles race me to the surface.  I flail about coughing, searching for a life preserver.  She cannot be my fate.  I want “normal,” I cry out.  Save me from a life beneath its surface.

Hers is not the kind of life a mother seeks–it is one that finds.

To be severed from the firm predictability land offers to live with her comes at first with a queasy sense of disorientation, of loss.  But flesh is flesh, so I grow scales. I become a mermaid, learn to breathe underwater, and realize that normal is the anomaly. I found the sunken treasure, turned the skeleton key,  and discovered that Everybody’s Got Something.

A boat nor a fisherman need not rescue me from my future.  I willingly kick my tail and follow my child adorned with special needs into the murky unknown, because she is my rib and I am hers.

After all, I have always loved the water.

Advocacy Series: Everybody’s Got Something

EGS Katie

Advocacy begins with a Something. 

We all have a Something, a story. We all have a circumstance that challenges our hearts, our health, our happiness. This is how cliches such as “In everyone’s life a little rain must fall,” and “God doesn’t put anything on your shoulders He (She) thinks you can’t handle,”—this is how these conventions, these pep talks, become cliches.  They are universal beliefs and often doled out by the well intentioned ad nauseam.

There is an event, an illness, a challenge, a disability in each of our lives, or our loved one’s, that sweeps us away from our intended appointment with “normal” and into foreign landscapes. Often without warning, without training, without preparation our paths pivot, sending us careening into the unknown. Things that happen to other people have happened to us. Stares come our way. We become intimate with vulnerability.

Dizzy at first and with unstable footing, we can’t stand still. Restless. Helpless. Frustrated.  But human nature, gut reaction, is survival.

Breathe in, Breath out.

Moment to moment. One day at a time, we chant in our hearts.  We glance into the past at what if, but fact cannot be altered into fantasy no matter how strong the desire or denial. We face forward. The inescapable truth of the future hits between the ribs.

Breath in, Breath out.

Our shoulders hunch, flinch, upon the impact of sympathetic pats on the back, accompanied by universal beliefs voiced with aim to sooth and strengthen. The words give the spirit resolve, even company. We are not alone.

Breath in, Breath out.

The chin lifts.  The sensation of passive victimization fades, and in its place active realization seeps in, an empowering resolve: the need to do something about our Something.

What is your Something?