A ‘carer’s’ experience is not the same as a patient’s. It can’t be. But the fallout from the stress and anxiety can be just as overwhelming. There have even been times when I’ve experienced both burnout and compassion fatigue.
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My name is Polly Bell and I care for my husband, Mike.
Looking back, I guess autopilot kicked in after Mike’s diagnosis. Let’s just get him through this. I put so much effort into it. If we just get through this, then this and the next this…. But where is the end to ‘this’? Testing my normal coping strategies to the limit.
A new crisis arising led to burnout. I became over-tired, run-down, depressed, fatigued, brittle. I remember thinking where am ‘I’… I’m lost in here somewhere. I couldn’t work out why I wasn’t coping, it was a spiral. The more I tried the less effective I seemed to be. I was running on less than-empty and felt I was getting nowhere.
We found ourselves at the Maggie’s Centre at the Freeman Hospital in Newcastle. Maggie’s isn’t just for cancer patients. Friends, family, supporters, and carers, all are welcome. Time with the psychologist, drop-in mindfulness sessions, and Tai Chi are all available. And yes, we tried them all.
A second crisis brought a different set of feelings. Why should I be feeling so stressed, anxious, overwhelmed? Guilt that I haven’t got cancer. Grief for what we’ve lost. Overcompensating, trying to keep one step ahead.… researching, pre-empting what Mike might ask or what his worries might be. Eventually, there was so much anger. I was bottling up my feelings.
It just seemed I was always putting his needs first. A carer? It’s not what I signed up for. It seems always about ‘you’, what about ‘me’?
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So … Compassion Fatigue.
It’s a testing time for a relationship. But the realisation that it’s not Mike I’m angry with, none of this was his choice. It’s the cancer. Remembering I’m not only a carer …. Partner, lover, we’re fellow creatives.
I knew something had to change to allow me to continue in this role. So yes, sometimes you have to put yourself first.
Attending an 8-week Mindfulness course at Maggie’s changed me in so many ways. I still practice now some 6 years on. A mindful practice even for short periods on most days, makes a difference, helping to avoid an emotional vortex.
It was where I learned to be kind to myself (really difficult to). A sense of relief as the course progressed, of letting go. It helped in seeing things more clearly, learning to respond not react, taking a breath.
It doesn’t always ‘work’ …. or maybe it does. After all, it’s about learning to ‘Be aware’ of how you are feeling at this moment. The following became, and still is, my favourite quote from the course written by an attendee on an earlier course. It still resonates with me.
‘… As many times as I forget, catch myself,
dashing forward, not knowing where I’m going.
That many times I have the choice
To Stop, To Breathe, To Be ….’
Me Time. I set aside Monday mornings. I stick to it, it’s vital. I avoid cancelling unless absolutely necessary. It’s important for us both that I have this time. I’m part of a professionally engaged art group developing creatively together. And a realisation – I’m good at this!
Early mornings are me time too. A quiet time for Tai Chi, Yoga, and/or Mindfulness.
Admitting to myself that I need support and that reaching out is not a sign of failure – quite the opposite. Opening up not bottling up. That’s where the support of the NCUK Friends & Family Natter comes in. Who better to understand how I’m feeling than those in a similar position?
Looking back…. that acknowledgment of ‘I’m not coping’, I have burnout, compassion fatigue. And you know what? It’s ok to not be ok – guiltless. Taking responsibility for my own physical and emotional well-being. There’s a sense of relief, I’m now realistic about what’s achievable.
It’s ok to look in the mirror and smile.