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Remembering the Caregiver’s Well-Being

Apr 16

Posted by: ACHA
4/16/2014 12:52 PM  RssIcon

By Yvonne Hall

Since my daughter’s transplant two years ago, each day has been one of relief and gratitude. Lorie’s recovery has been truly miraculous, even surprising her medical teams. Admittedly, I was becoming complacent. Then without warning, the proverbial “other shoe fell.”

How could she possibly be undergoing brain surgery and what were we doing back in the ICU waiting room? This past month has been a blur of doctors, hospitals, waiting rooms and travel. Lorie has contracted a bacterial infection in her brain diagnosed by a rapidly-growing abscess. Infection is the enemy of transplant patients, but a brain infection was almost beyond the comprehension of her family, as well as her transplant team.

Thankfully Lorie is home recovering now and although we’ve been warned recovery will take months, knowing Lorie, we believe differently. I’m recovering as well—exhausted, anxious and still in a state of total disbelief. I’m back to being apprehensive of every phone call or text message in case it indicates yet another 3½-hour trip back to Toronto.

This message, however, isn’t meant to address Lorie’s newest crisis. Rather, it’s intended for all of us caregivers who so readily give time and energy, too often at the expense of our own well-being. It’s meant as a gentle reminder that living in a “fight or flight” mode, with hormones firing constantly, eventually could make us ill.

Over the past year constant anxiety has become my new companion, manifested from years of pushing my emotions down rather than being honest and admitting that sometimes I’m not OK. By choosing to share my secret condition, I’m following my desire to see the insidious silence surrounding psychological issues broken with the hopes of sparing others the same fate somewhere down the road.

Anxiety is a frightening condition that insists on taking control of your mind and body. I’ve learned, however, that it can come bearing its own special gifts. Coupled with an injury a year ago, I was forced to step back and rest , allowing or perhaps forcing me to take the time to read, meditate and explore how to control the fears (disguised as anxiety) that persisted on taking charge of my mind. With additional help from therapy and naturopathic acupuncture, I’ve acquainted myself with new tools to hasten recovery.

Over the years I’ve mistaken control for love and service. I believed my physical presence and being constantly at Lorie’s bedside was my duty as her mother and prime caregiver. Anything less was not enough. Now I see how distorted this image and belief was. I created a martyr, not a caregiver! It’s difficult admitting that it’s OK to step back and hand the reins over to her husband, but with the help of my therapists, I’m sorting out my place in this puzzle while allowing others to take their rightful place.

Saying no is hard but sometimes necessary. We teach others how to treat us and by taking charge for years, how could I possibly expect anyone to step up and volunteer to take my place? Of course I’ll always be at Lorie’s bedside to offer love and encouragement whenever she needs me, but the difference this time is honesty. When asked how I am, I tell the truth. If I need a break—I say so. Once any crisis has passed I understand it’s alright to leave her for a day or so in hospital, and to do so without guilt.

Caregivers, you’ll be amazed when you allow yourself to pass the torch. I now listen to my body and when it tells me I need to step back, I do. By admitting my getting ill, either mentally or physically, won’t serve Lorie in any way, I recognize that in order to serve her appropriately I have to serve myself first—and to give myself permission to do so guilt-free.

It may take another year to totally conquer my anxiety but I will emerge stronger and wiser. The most important thing I wish to emphasize today is for others not to follow my path and wait 50 years to discover your truth.

Yvonne Hall is a wife, mother, grandmother and life coach in training. She blogs and journals regularly as well as holds the position of personal assistant to her daughter, Angel Thinking author and CHD advocate Lorelei Hill. Yvonne’s intent in coaching is to encourage those in their transition years to embrace their age and value their wisdom while seeing aging as a new chapter rather than the last chapter. Yvonne has a lot to offer families struggling to raise children with CHD as well as women looking to grow wise gracefully.

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