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Parents as Caregivers

Johnny2by Karen Irwin, CKN Project Co-ordinator

A Day in the Life….

I looked in the rear view mirror at my son Johnny, buckled in his car seat.  His bald head.  His big brown eyes without lashes or brows.  His skinny, sick little 4 year old body.  My eyes filled up with tears.  As I turned my attention back to the highway in front of me, I slammed on my brakes when I saw the cars in front of me stopped dead.  A quick listen to the all-news radio station told me the highway was closed due to an accident.  Drivers were getting out of their cars to stretch their legs and talk on their cell phones.  When I stopped the car, Johnny began to cry and yell, telling me that he felt hungry and sick and he wanted me to take him home, and I thought, “Why?  Why this?  Why now?”  Hadn’t he had enough already today?

Our day had started at 6 am with me trying to coerce Johnny to come to the hospital, making silly promises that we would “have fun and play games”.  I offered him every reward I could think of if he would just get in the car.  But he wouldn’t budge; he knew better.  He knew there was no reward great enough for yet another day of blood work and chemo, and he was right.  After finally managing to buckle him into his car seat, we started into the rush hour traffic, and arrived 90 minutes later at Sick Kids Hospital.  Seven hours went by, mostly sitting and waiting for his name to be called.  Eventually, the blood work, physical exam, and chemo were completed.  We raced to the car to drive home, hoping to miss rush hour and be home before dinner….and now this.  I put my head on the steering wheel and squeezed my eyes shut, trying not to cry in front of him.  My level of frustration as his caregiver and mother was overwhelming.  I wanted to drive down the shoulder of the highway and blast through this mess. I wanted to scream.

Lessons Learned….

I can’t stress enough that as a caregiver, you have to look after yourself physically and emotionally.  You need to vent your feelings; you need to relieve pent up stress through physical activity.  While you’re caring for your loved one, you will feel anger and frustration at your circumstances – feelings which you can’t always let out when you’re feeling them.  This results in suppressed emotions that can drag you down physically and deplete your inner strength.  It’s important to have healthy outlets for these bottled up feelings….whether it be walking, exercise, music, art, being with friends….

It is also important to ask for and accept help when you need it.  When your family and friends ask, “What can I do?” they really want you to give them something to do!  Accepting assistance not only helps you cope with your own stress, it also gives you more time to spend caring for your loved one.  Not to mention the benefit you receive by feeling you’re not alone, that you have a community of support around you.

Johnny and I finally got home a couple hours later.  Thankfully, I was able to let the rest of the family take over his care that evening so I could decompress.  As much as I felt I “should” make dinner, clean up and play with my other children, I didn’t.  Some days are just like that and after a couple years of living with my son’s cancer, I had learned to accept that reality.  It’s easy to fall into feelings of guilt and “shoulds” as a caregiver, but we need to accept that we can only do so much.  We need to care for ourselves too.

Related Article:  Cancer:  A Family Affair


This entry was posted in all, Caregivers, Caring for Someone with Cancer and tagged , , . Bookmark the permalink.

2 Responses to Parents as Caregivers

  1. Nice moving piece, and always important to reiterate the importance of caregivers looking after themselves too.

  2. PAM says:

    Beautiful Karen, you captured what many would like to say but don’t. Caregivers are truly “First Responders” in the day to day, hour to hour times of illness, sadness, helplessness, anger and so many other emotions that our loved ones face when ill. And that the Caregiver face as well.
    Thank you

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