I have been a caregiver to a person with chronic pain for 30 years. I’ve struggled, suffered, had my share of “Poor me” and belatedly discovered the secret to all of this.
Effective caregiving starts with yourself. Taking care of the caregiver.
My story has been a long one, dominated by chaos, confusion, self-discovery and enlightenment. I didn’t plan on being a caregiver. Most of us don’t. It doesn’t come with an instruction manual. You make it up as you go along, as you seek to aid and comfort someone you love, someone who needs your help badly.
The truth of this is one important aspect of my partner, Cynthia Toussaint, the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.
It is the story of our journey together with her pain.
My 30-year caregiver evolution started when I was 22. I was an actor and Cynthia was a ballerina. All was possible. Then she developed Complex Regional Pain Syndrome (CRPS) — a chronic pain condition that can affect any area of the body, usually an arm or a leg.
CRPS and Cynthia’s pain consumed us like a raging fire. Our plans went out the window as we fought this terrible, mystery illness with virtually no help from her doctors.
The early years were daily struggles with “What’s going on?” and “Why is this happening?”
Cynthia had become bedridden and I wasn’t prepared to tend to her physical and emotional needs 24/7.
I made a silent commitment that I would stay. I would fight this monster head on. Over the years, her pain became more predictable with accommodations. We used a wheelchair, watched how far she walked, etc.
But family and friends drifted away. And when Cynthia’s health improved, I got angry she wasn’t independent. She still needed me every day and every hour to cook, clean and drive her to appointments.
I yelled, screamed, ate a lot of junk food and gained 40 pounds. I dressed like a slob and let it all go because I was depressed and burnt out.
I was existing through the life of another, focusing on her pain, sadness and needs. I had fallen into the trickiest, sneakiest caregiver trap of all. I had lost myself. I wasn’t John Garrett anymore. I’d become the guy who took care of Cynthia.
It happens to us caregivers. In our attempt to be the best we can, we make this honest mistake. But with time and patience, we can move beyond the anger and grieving for the life that once was. And that’s when we rediscover ourselves.
Over the last ten years of my caregiving odyssey, I’ve grown and stretched and I now embrace my duties and feel the inner-peace that comes with doing the right thing. I’ve discovered that my wellness is as vital as Cynthia’s. I’ve realized inner-strength that could only come from this wonderful opportunity.
Has it been hard? Yes. Do I wish there had been less challenge? Of course. But I’ve become a better caregiver and a better man. I now love and cherish myself more deeply, and I’ve made a wondrous discovery. I can be a better caregiver for John Garrett too.
Here are the top caregiver tips that helped me on this journey…
Caregiving is tough work. Often you feel helpless, lacking ability. But in fact you are the one vital part of making things work. You can’t count on others to give you a pat on the back, but you can count on yourself. Whisper mantras of “I love you”, “You’re doing a great job,” and “You deserve a hug” to yourself.
These simple acts of self-appreciation can improve your mindset to take care of your loved one in a positive, productive way.
Exercise on a regular basis
I take a long walk five times a week, and that’s a lifesaver. Get out of the house, get some fresh air and clear your mind. Get away from the person who’s probably sick of you hanging around all the time.
Walking or most any form of exercise is an amazing mood elevator.
You need the right kind of fuel to keep up the pace. Fresh fruits, vegetables, nuts, and whole grains. Stress is synonymous with caregiving and eating high-fat, high-salt, and high-sugar foods is a comfort trap.
Do the things that are special to you
Find what nurtures your soul and hold onto it. Don’t give up the things you enjoy because there’s not enough time or you feel guilty not being with the person you’re taking care of.
Your time and your enjoyment, is an important investment in you.
If you’re depressed and uninspired, that negative energy can corrupt everything.
Peaceful time for reflection and renewal
Sometimes you need to shut off the caregiving chaos. Take the time to sit peacefully twice a day for five minutes. Clear your mind and practice deep breathing. These micro-breaks will help you re-boot on the most stressed of days. They’ll help you manage your anxiety and frustration, and provide you with a sense of renewal.
All of these are facets to how effective caregiving is nurturing us. For Cynthia and me, this is bringing true joy to our often difficult lives.
Bottom line: You should look at caregiving as a marathon. And with marathons, the ones who know how to pace themselves and how to conserve their mental and physical energies are the ones who sustain and excel.
And, heck, it’s way legal to have a happy time whenever you can.