What have I become? Caregiver burnout

What have I become?
My sweetest friend
Everyone I know
Goes away in the end
You could have it all
My empire of dirt
I will let you down
I will make you hurt

Trent Reznor – Hurt

Everyone’s cancer journey is different. Every caregiver and partner reacts differently. When Laura was diagnosed, I was overwhelmed by fear and a desire to save her. I went into fight mode. Even writing this blog brings back feelings of overwhelm. This is a story of my experience of caregiver burnout.

Now with 100% more cancer!

Now with 100% more cancer!

Heroic vs reluctant caregivers

I started as a heroic caregiver. As time wore on and I neglected myself, I burnt out, closed off and became more a reluctant caregiver. This had a huge impact on how I looked for support. As a heroic caregiver, I wasn’t only looking after Laura. I was seeking support for myself. People suggested that I ‘look into’ Wellspring and Gilda’s Club.

Looked into wellspring and found stuff like this:

Drumming is an expressive technique that uses percussion and rhythm exercises to express emotions, manage stress and improve a sense of emotional and physical well-being. No prior drumming experience is necessary.

Neat. Drumming. However: First obvious complaints: Signing up is a pain in the ass. More appointments during the caregiving crisis = more pressure / little relief. Appointments during business hours at a cancer support centre = more time in cancer world, less time in world I wanted to create for myself.

I was overwhelmed by cancer. My whole life had become cancer. In the few minutes I had to look after myself THE LAST THING I WANTED WAS TO BE AROUND A BUNCH OF OLD PEOPLE WITH CANCER.

Yeah. I said old people.

These aren’t the droids we’re looking for

Initially I went with Laura to every appointment. It was extremely rare to see someone our age in the waiting room. We were met with looks of pity by the other clientele. It sucks beyond words to be in the prime of life and pitied by people receiving their old age pensions. So how did I know that the drumming group would be full of old people? Check out the image that came with the drumming workshop:

Old ladies drumming.

All women. Many look like my mom, or her friends. 55+? Not my crowd. I love my mom. And that’s not the support I was looking for.

The next suggestion? Check out Gilda’s Club. Both Laura and I have emailed them several times through the years. I’m still waiting for a reply. I was told that they are like people ‘of a certain generation’ who prefer the phone.

Contact Gilda's Club today!

Contact Gilda’s Club today!

 From hero to zero – the price of caregiver burnout

A year post diagnosis I was ‘done’ with cancer. Fed up. Tired. Cancer had eaten too much of my time. Too much of my energy. Too much of my life. Without support during my ‘heroic’ phase, I burnt out. At that time Laura learned about Couplelinks

Welcome to Couplelinks – a professionally facilitated, online workshop for couples affected by breast cancer. This project is currently only available as a research study to individuals living in Canada.

Tired of it all, I resisted. She resented. An opportunity was lost. Since then I’ve uncovered lots of helpful websites and places that recognize how important it is for a caregiver / partner to look after themselves.

What would have helped

What I found were front line cancer workers with vague ideas of the supports that existed for caregivers. They were busy. In their world, I was an afterthought. What I needed was a professional who could help me navigate the cancer world and discover the services that could really help.

In the next post, I’ll write about a whole bunch of great online resources I’ve discovered through Willow. They are showing incredible leadership in caregiver support. As well, there are lots of fantastic resources for young adults living with cancer. I’ll explore those too.

I welcome your comments below.  And remember, sharing is caring!

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