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