Adding joy and abandoning guilt

Things that help me as a carer

‘If your house is on fire, you’re not going to start mowing the lawn,’ I said in a peer support group, trying to describe how difficult it can be to look after yourself as a carer.

When a lot of your life prioritises someone else, looking after yourself can feel alien. If your cared-for is in crisis, ‘on fire’, the everyday mowing-the-lawn maintenance of your own well-being can feel like too much effort. Unimportant, in comparison to the urgency of the blaze.

This struggle is something I’ve heard voiced time and time again by other carers. I feel so guilty, we all say. I can’t switch my mind and body off. I feel stressed and isolated. As a carer for two family members existing within the overlap of autism and mental illness, my own issues and feelings often don’t feel important enough to pay attention to. 

However, I do have a few hard-won nuggets of advice. Little golden prizes I’ve collected by sifting through and surviving. Let me shine them up for you and lay them out on a velvet cloth. Maybe you’ll want to take one home.

1) Abandoning guilt

After months of sleep deprivation and anxiety, 24/7 care, psychiatric hospital visits, and ignorant and accusatory professionals, I hit a wall. There was no end in sight. I was desperate for change, but how could it happen?

If I couldn’t do more, couldn’t rescue my loved ones, couldn’t change the healthcare system or prevent awful things, and if I was struggling to even feed myself, how could I make anything better? 

It felt impossible to feel anything positive. Selfish, even. Whenever I experienced any minor escape, the mental image of how my loved one was struggling would superimpose itself over my vision. What kind of person can feel good at a time like this? I would accuse myself.

These thoughts are not righteous. Denying myself care and rest because of this insidious guilt didn’t make things better. Not for those I care for, and certainly not for me. Carer, care for thyself. Easier said than done.

Hearing other carers share feelings eerily similar to my own was a massive help. If I didn’t judge them for their guilt and anger and grief, then I could loosen my grip on my own self-judgement. Over time, I started to reply to those self-critical, guilty thoughts. I am a person with needs that deserve to be met. I am important. Whatever emotions I feel are fine and acceptable. Looking after myself enables me to look after others, like putting my own oxygen mask on first.

There are many ugly emotions that are hard to let go of, but leaving guilt behind allowed me to tentatively stoke some hope that things could be different. It allowed me to see beyond the impossible, and to begin to have desires and goals again. 

2) Adding joy

When my caring took over all areas of my life, the negative impacts felt like immovable mountains I couldn’t excavate. After fruitless attempts to conjure a future where these mountains disappeared, I realised I had to start consciously adding things that I enjoyed back into my life. I had to find a way to make life more bearable, I had to add connection, creativity, joy.

At first, the changes were based on comfort and survival – things that made me feel steadier afterwards. Watching TV with someone, reading, and sleeping more. I stopped trying to do everything. I let go of commitments. I vented to another carer, a family member who understood my experience better than most, one evening every week while walking the empty streets of my neighbourhood.

Then, although ‘big’ joy still felt out of reach, I found and held onto more little joys. I photographed plants I liked and went on walks when I had the energy. I found an interest in foraging and finished my first-ever crochet project. I did a mindfulness course. I learnt techniques to calm my fear and anxiety. I started making neurographic art and writing sad poetry. I tried to let go of ‘productivity’ and ‘success’ and prioritised making things accessible for me. I made sure to arm myself with decompressing activities and options to do after a stressful phone call or hospital visit. 

When I stopped trying to fix and get rid of everything bad I was experiencing and focused on finding joy, things started feeling easier. It’s one of the most helpful things I’ve done to support myself as a carer.

3) Spaces to be yourself

When you’re a carer, you spend a lot of time managing the minutiae of it all. Speaking to your loved one about their care, having phone calls and appointments, and making sure you know enough about their conditions. There’s no training, and there isn’t enough support. 

Somewhat counterintuitively, the biggest relief I’ve found is not yet more resources and information to trawl through. Instead, it’s a time when I can be a person outside of it all. When I was struggling, even a simple interaction at a supermarket checkout was a relief.

This space looks different for every carer. I know carers who have used well-being grants for evening art courses, respite care or gym memberships. My spaces are an in-person LGBTQ nature group, a very queer roller derby team, days ‘off’ with a friend, and a virtual career mentoring programme.

Community and connection can make as big a difference as “self-care”, and can be easier to commit to. Showing up regularly somewhere you don’t have to be a carer can be easier than changing your whole mindset or daily routine. This is one of the many reasons why I believe LGBTQ+ spaces for carers are important.

A person being cared for should never be reduced to their illness, disability, or addiction. A carer, too, is never just a carer. Extending the same care to ourselves as carers as we do to our loved ones is challenging. Nevertheless, we all deserve spaces where we can put our worries down.

By Jules McGee-Russell 

Published on 20/07/23