From patient to care partner

I might call myself a professional patient. Over the past two decades, over eight operations, including brain surgery for a brain tumor, and multiple health conditions – the healthcare system and I are firm acquaintances. But this is not a pity party or a list comparison. This is to set the scene.

My husband and I have been together for over twenty years and during that time, he has always been the care partner. His steady care, patience and kindness have always been a constant.

My most recent experience as an individual with a brain tumor, inspired me to share the message of putting your health in your own hands. As a result, I have met and connected with amazing and inspiring individuals, both patients and care partners, around the world.

Yet, my experience in this world of patient advocacy and as a ‘professional patient’, had not prepared me for the humbling and ‘other-side’ experience of changing hats.

From patient to care partner

I thought I understood the dynamics, the challenges, the highs and lows. I was wrong.

The past two weeks have unveiled a new reality to me.

My husband, a.k.a. ‘the man who does everything’ herniated a disk in his back. This came on suddenly. A 3am 911 call after four days of agony resulted in five days in hospital, a nerve block followed by surgery. Recovery period = six weeks.

This was all combined with back to school, hockey tryouts and a new work contract for me. It was like a firework display all in one week!

We went from a dual participation household to the ‘solo parent’ and care partner. Days at the hospital, followed by a dash for school pick up, drop at friends, hockey try out, back to hospital, pick up and home for dinner. My organization skills were pushed to the max.

I worried, I organized, I wrote lists, I forgot things, I swore, I cried, I was late, I had no groceries, I got a parking ticket (at the hospital!). I was a wife, a mom and a care partner.

I was no longer the patient.

Life had thrown me another curveball. You can learn from this one it said.

What have I learnt as a care partner?

In the future, I will always ask after the patient and the care partner
Ask for help. Make a list of what needs to be done and ask around. We are often too hesitant to reach out until it’s too late.
Grant yourself permission to recharge. Even if it is a 30-minute walk or a sit in the sun with your cuppa tea
Breathe – when it feels like the world is closing in, grab a moment to take a few deep breaths. You need it to keep on going.
Take it one day at a time, literally. For the patient, it’s often overwhelming for them to think past a day and that adds pressure to the home environment.
Talk to someone. Especially important for long-term care partners. There is a lot of stress that is often internalized. Juggling caring, household, family, finances and work. Caregiver support groups or even just a friend or acquaintance going through a similar experience is important. Nothing can take the place of a little human support.
Hospital parking is insanely expensive per hour. Go for the weekly pass – always over estimate (then you won’t get a ticket!)

How to help a care partner?

Don’t ask, just do. It’s hard for a care partner to think about what they need, so just do it. As long as they don’t get 10 lasagnas, you can’t’ go wrong!
Simple tasks that we take for granted are the ones that often fall behind, that’s where the care partner often needs the help: meals, laundry, getting the groceries, mowing the lawn
If there are kids in the family, they can often feel unsettled or ‘abandoned’ if the care partner is at the hospital or busy caring. Ask the child over for a playdate, fetch them from school or sports so the child can feel a sense of normalcy in their lives.

Given the increase in the aging population and chronic diseases, all of us will be a patient or a care partner at some stage in our lives.

Whichever role you may find yourself in, empathy, love, compassion and patience will go a long way.

I am only experiencing being a care partner for a heartbeat. Many people are care partners for months, or years or a lifetime.

For their dedication and selflessness, I am beyond grateful. My eyes are now wide open. #grateful