Tuesday, 31 July 2012

The Caregivers' 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 week, 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, we were discharged.

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.

12 comments:

BLOOM - Parenting Kids With Disabilities said...

Hi Donna -- that was really really hard to read. I am sorry to hear about the latest crisis while you were at the cottage, but I am glad that Nick is okay.

How do you manage the demons you spoke of?

I was away for 3 weeks on holiday and when I came back so did all of the stress and worry and constant pressure. Ben doesn't have the medical needs that Nick has, but he is so vulnerable in so many ways and I feel like life is a constant pressure cooker trying to push his development forward and make him 'fit' in a world that wasn't designed for him.

I'd love to hear more about your coping strategies (I seem to recall that dancing was one of them!) Great to hear from you, Louise

Julie said...

I hate to hear the ryhthmic coughing that can preceed a neurological episode that causes my girl to just stop breathing. I will be up in my office writing and then I will hear it and wait to see if the FRW is managing and then seomthing changes and I practically slide down the banister to get to her as a fast as possible. She has done it only 7 times in the last 6 years but it still triggers a fear in me that this time could be "it." Great post! Glad Nick is okay......

Julie said...

Darn! Just wrote a comment and it disappeared :-(
I get it...this deep rooted fear. I feel it when my cell phone rings and it is used only for emerh
gencies concerning Meredith. I have been driving when it rings and I pull pover with the adrenalin pumping through my body only to be greeted by a telemarketer. I am glad Nick is okay. What a terrible scare....

Anonymous said...

Donna,

As an adult with CP, I can tell you, "Choking will occur more frequently." Hence, I am aware of the foods that will cause me distress, as I take my time while eating, and usually have a drink within reach, taking a sip here and there. Sometimes, depending on how I'm feeling, I decide to abstain from certain dishes.

With this in mind, may I recommend "Banana-cream pie?" Tell Nick, "Not to even think about eating the crust!"

love
matt

GirlWithTheCane said...

I'm so glad that Nick is okay, Donna...take good care of yourself.

Sarah

Charlene Grove said...

I understand the feeling. I work at live in care as a caregiver and my patients were mostly old persons. 4 already died on me but I can't forget the first time it happened. It was kind of traumatic for me because I've grown attached to Geena, my patient. I almost quit because of that but fortunately my mentors talked me out of it.

Donna Thomson said...

Hi Charlene,
Thank you for sharing your experience. I don't think we appreciate the depth of feeling of our paid caregivers when something bad happens to the client. I do know that my son Nicholas' helper/friends as I call them, feel absolutely awful when my boy becomes ill. There are always many hugs all around because I know they are shell shocked and often crying with me. I know that professional medical practice dictates a professional distance, but not enough is taught or understood about the relationships that develop in community long term care. Especially in live-in situations! We still consider our former live-in caregivers who helped me with our home hospital to be family! Thanks again for sharing, I'm so glad that your mentors talked you into staying in the caring field.

Charlene Grove said...

I was glad too. It's a great feeling to know how much you can do for a person. Though after that incident I managed to compose myself and kept a professional distance. Anyway, I do hope you'll hear more good news rather the bad ones!

Felicity Mozdzen said...

I work in a live in care west sussex and most of our patients are elderly too. I find joy in my profession because spending time with them can make you learn a lot. Although some of them can't speak straight anymore, being there and listening to their tales of joy and sorrow is enough.

Donna Thomson said...

Felicity, listening is a highly underrated occupation. You sound like someone I would love to have as a carer and a listener. Your charges are so fortunate to have you as a carer!

Natasha Braves said...

That's one of the problems of being in the medical profession. When you feel that you have all the skills needed to help people out (especially those close to you), but yet, you feel powerless because you can't do anything at all (like when you're not the one supposed to preside over their surgery).

Donna Thomson said...

Thanks for your comment, Natasha! Yes, those in the medical profession are certainly not immune from feeling dread after a difficult case that went the wrong way. Dr. Brian Goldman has a radio show in Canada on CBC called "White Coat, Black Art" and I remember on one show (or it might have been his TED Talk), he discusses the awful words that physicians most hate to hear from their superior. They are, "Do you remember...???" (ie ... that woman in the ER you sent home yesterday? Well, she's in ICU now because you misdiagnosed a pulmonary embolism."