Tuesday, 12 April 2016

My Caregiver Worst Fear



Every caregiver has a worst fear - a nightmare scenario that unfolds like an unwanted, sinister guest in the imagination.  It might be triggered by the sound of an unusual thud upstairs, a front door slamming, or the smell of burning toast.  In my case, it's the telephone.  When Nicholas was very young, the treatment team suggested that he attend a special school for children with disabilities.  The intensive therapy on offer sold us on the idea and so, one day, a yellow school bus arrived at our front door.  I remember Nick's tiny face, contorted in a silent scream behind the  bus window.  It was raining that day and I cried too.

I sat down for a cup of coffee in the unfamiliar silence and peacefulness of our house.  A little while later, the telephone rang.  "It's the school here.  Nicholas has had a seizure and the ambulance has been called.  He is still not responsive, but he is breathing."  "I don't understand", I repeated dumbly, "Nicholas doesn't have seizures."  But he did have one that day and we have now come to accept that our boy has epilepsy, amongst his other disabling conditions.

After that, I startled whenever the phone rang.  I dreaded speaking on the phone and feared answering each call. 

Years later, Jim and I were sitting at our dinner table with Jim's sister and her husband.  We were laughing about something when the phone rang.  It was Jean, my mother in law.  "Great!" I thought, "we can all chat on the phone together".  But Jean was calling from the hospital.  She had fallen on an icy street and had broken her hip.  Her life would never be the same.

Last summer, Jim and I were at our family cottage in the Quebec Laurentians.  The end of a long, lazy beach day was broken by the telephone ringing.  It was an unfamiliar voice from Nicholas' residence - Nick had choked - he had stopped breathing - for 15 seconds or so - ambulance called - Nick was now breathing but unresponsive.  I searched for the car keys and left my wet bathing suit lying on the floor.

I drove through frustratingly slow country roads, many made even slower by summer construction.  Two hours later, I walked into Nick's emergency room bay to find the doctor assessing my young man.  Nick looked like himself, just a little flushed in his cheeks, but with pale lips.  A chest X-Ray showed nothing worrisome and so, he was discharged. Still trembling, I pushed Nick out into the evening light.

I still hate the telephone.  I much prefer email with its considered questions and answers.  I worry when I laugh at someone's joke in the company of adults - I am relaxed and happy, but suddenly a telephone ringing silences me.  I feel chastised and wary. 

Everyone who gives care to a loved one who is vulnerable will have a deep-seated fear of losing control and somehow failing to protect their charge.  Those whose caregiving responsibilities test the very boundaries of human compassion will have well-founded fears that dog their every waking moment.  We all have our demons.
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