Navigating Caregiving & Burnout
Gentle ways to create and claim pockets of joy amidst the chaos
Hey friends,
It’s Carer’s Week in the UK and in honour of that, I wanted to write a post about caregiving and burnout. I also thought I’d share some creative practices that have helped me get through my lowest days.
It also feels like a good time to take you behind the scenes of my life these last few years. It’ll likely also explain why I’ve become so passionate about both the creative journey and romanticising my life and encouraging other people to romanticise theirs, too.
This post is a little longer - and even more personal - than usual, but I’ve also included a bunch of tips for things you can do if you’re feeling burned out and struggling to bring some light back into your life.
If you’d prefer to skip the carer spiel (I won’t judge you, I promise), feel free to scroll to the end or even come back next week. I know this type of content isn’t for everyone, and that’s okay.
Caregiving is one of the hardest things I’ve ever done in my life. Caregiving from afar brings its own challenges, too. As does young onset Alzheimer’s.
These last few years have been a wild ride, and I have even more respect and awe for caregivers - and even more issues with the caregiving system.
For example, it’s terrible how many nursing homes won’t take under 65s - even with advanced Alzheimer’s - for respite care. The amount of paperwork and meetings necessary for a full-time worker to even go about employing the services of in-home carers is obscene. And of course, there’s the cost, too.
Then there was the struggle to even get a diagnosis - and how my mum still falls in the cracks in the medical system, with more than a year between appointments. There’s very little support available because she’s in this weird age gap. Too young for geriatric care, too old and too far gone for normal care.
It’s utterly exhausting to have to advocate for her and fight the system every step of the way. Everything is just so hard. It feels like we’re all dragging each other up a mountain, barefoot and blindfolded.
Or, in my case, trying to explain to the barefoot, blindfolded person where to put their next step and encourage them to keep going, over the phone, with patchy signal, from the other side of the world. It’s fun.
If I’m totally honest, I’m still reluctant to write too much about this journey, especially while my dad - who is my mum’s main caregiver - is going through it.
But, as someone who writes to process things and who likes helping others, I also want to write about it and share our experiences in case they benefit anyone else. It’s a real push-pull situation.
For now, I've decided I'll share a little to bridge the gap and talk about creative cup-filling practices to keep in the back pocket, just in case shit ever hits the fan and you need them (although I hope you don't).
Check out previous posts I’ve written on the journey here, here, and here.
Cliff Notes
2013: I left the UK with a one-way ticket.
2019: I flipped a coin and moved to Australia. My Mum starts going downhill quickly. Drs said it was menopause, anxiety, depression, etc, etc, etc. and palm her off with pills and HRT patches.
2020: We realise she’s actually got moderate (mid-stage) young-onset Alzheimer’s. She’s only 59.
2020-22: Border closures mean I’m stuck in Australia and have to face it all from afar with no real support network.
2019-23: I speak to her on the phone almost every single day for four years.
2024: she’s not doing well mentally or physically, and has absolutely no idea who I am, but is hanging in there.
At the time of my mum’s decline, I’d just rocked up in Australia. I'd been on the road for almost seven years and figured I'd come for a quick trip to fill the coffers before heading back out into the wild.
Less than a year later, I'd become a long-distance carer spending upwards of four hours a day on the phone to support my mum - who didn’t understand what was going on and refused to admit anything was wrong with her - and my grandma, who couldn't deal with her grief and instead spent the final years of her life trying to destroy my family.
I also lost working rights for two years and the entire career I’d spent the previous seven years building collapsed under me. I had to spend all my savings on an application for permanent residency. I didn't have a car or many real friends. The only person I had was my partner.
I was exhausted, lonely, lost, and utterly clueless about this new reality that I’d managed to sleepwalk into. I felt like I’d clicked my fingers and woken up in a totally new world.
Break or bloom
In lieu of other options, I found myself doubling down on my creativity.
In the beginning, I wrote. A lot. Journals, vignettes, poems - something I’d never even imagined doing. I took endless photos and discovered a love for macro photography. I read books. I dove into fiction in a way I hadn’t since I was a kid and wanted to escape the world I’d ended up in - long before I realised that I could physically do that, too. I even started drawing for the first time in more than a decade.
In an effort to self-soothe, I tapped right into the creative stage of the seven types of rest.
Of course, I burned out too. Hard. Over the next few years, I ran myself into the ground. I caused irreparable physical damage to my body from teeth-grinding and too-hard brushing (of all things)! I now suffer from chronic pain, chronic fatigue, insomnia, and myriad other physical conditions, and have realised that I’m autistic-ADHD, which has made everything even more of a challenge.
It was on one of my deepest darkest days that I realised I couldn’t keep doing that to myself. I dreaded showing up for my mum, spending the entire day feeling anxious about having to call her every evening. I started hating sunset, which used to be my favourite time of day, because I knew it was “her” time.
I knew I couldn’t go on like that, and that I had to start making some changes or I would be no good for anyone.
I figured I could either:
Surrender to my fate and feel embittered by this hand that we’d been dealt, keep running myself into the ground with guilt and stress and be too burned out to support the people who needed me.
Try to find my centre and joy regardless, and find ways to tap back into the things that used to make me happy so I could give more.
The three pillars
Firstly, I looked at my life and realised three main things were filling my cup.
Creating for joy - not for work - and consuming other people’s creativity.
Going on daily bike rides and spending time in nature.
My love for my home, my cat, and my physical experience of the world.
These three things have now become my non-negotiables. The pillars of my existence. The only things guaranteed to make me happy when everything else hits the fan.
Cup-filling practices
I've written a list of things that have managed to get me through the last few years. I oscillated (and still oscillate) between these - recovery is not a straight line - but they all had their place. If you’re in a similar place, you might just want to take what resonates and leave what doesn't.
This kind of recovery journey is an intensely personal one - especially when the journey is as long as mine has been (with no end in sight) - but hopefully, this can be a jumping-off point.
#1: Cup-filling practices for when you’re at rock bottom
Comfort read a favourite book or watch a joy/nostalgia-inducing TV show/movie you’ve already seen.
Pick a new easy-reading guilty-pleasure book/TV show/movie. If you can’t handle any sort of suspense, read a spoiler and find out the ending first. I’m not ashamed to admit that I had to do this for a long time. Sometimes, I still do.
Curate your scroll so you’re only seeing things that make you happy. My discovery feed on Instagram is full of joyful paintings, mushrooms, nature, and fae-esque memes. It has picked me up from rock bottom on more than one occasion.
Reach out to a reliable close friend. I would preface these conversations by saying I didn't want drama or to talk about anything in my life and absolutely did not want advice or opinions. I found voice notes or messages were the only medium I could engage in. I couldn’t do phone calls, emails, or letters. I still struggle.
Sit in a cafe with coffee and cake and read a book/listen to a podcast/scroll silly memes on Instagram. Remind yourself it’s okay to be in public even if you absolutely do not want to talk to a single other human in any capacity other than pleasantries.
Go for a walk or a bike ride. Listen to a podcast/audiobook and/or take a camera if you need something to do. Go for a walk or drive at night if it’s safe and you feel up to it. There’s nothing like seeing the stars to remind you that we all have a capacity for awe and wonder.
Eat comfort food. Nostalgic, preferably. I’ve probably lived on jacket potatoes for longer than any human should, but it filled the void.
Spend time out in nature. Notice the seasons, the moon cycles, the passing of time, the little things. Start looking out for birds or animals, or spending time with other animals.
Get a house plant or buy yourself some flowers. Spend time in the garden, if you have one, or channel your inner housecat and sit by an open window and soak up the sun.
Try engaging in a very gentle, low-stakes creative practice. Write one line in your journal. Pick up an adult colouring book. Do a puzzle. Treat yourself very gently and lean into joy.
Romanticise the little things. Put cinnamon in your coffee. Make fresh-leaf tea. Put essential oils in your shower. Pull an oracle card.
Keep it as simple and easy as possible
#2: Cup-filling practices for when you’re half-empty
Journal every day. You’ll be amazed at how quickly the passage of time goes. It feels like the days drag out forever, but the weeks fly by. Having a record isn’t as trauma-inducing as you think it will be. One day, it’ll be your personal hero’s journey.
Read non-fiction books and devour information. Go down rabbit holes of things you find interesting. Light up your mind with stuff. Sign up for other Substacks or online courses. Let your knowledge-hungry mind be satiated with whatever it desires to know more about.
Spend time cooking meals from scratch, baking, or creating in whatever flavour of creativity you enjoy. For me, this was writing poetry, macro photography, and cooking.
Reach out to a trusted friend and have a chat. Let what needs to be said be said. Don’t try to hold back your emotions, but also don’t feel like you have to dwell in them, either.
Start opening yourself up to new experiences; new books/TV shows/ movies. New opportunities.
Ask yourself questions like, “When this is all over, what do I want to do?” or “What would I be doing if I wasn’t doing this?”. Let the answers lead you where they lead you. Write them down. See what sparks. You won’t come out of it unchanged, which means going straight back into your old life is likely to be uncomfortable. Having some dreams, goals, and visions is a good place to start.
Try venturing a little further afield. Go somewhere you love. Meet up with a friend. Slowly open your world back up and open back up to the world again.
Move your body more. For me, this was daily bike rides. I don’t really like yoga, dancing, running, or any of the other things most people do. I just went further on my bike and pushed myself harder to get my heart rate up.
Plant some seeds, get more houseplants, spend more time in the garden if you have one. Nurturing things can be a great way to fill our cups.
Find a way to give back. Do things like giving blood or volunteering, if you have the energy. I started fostering cats and worked with my local cat rescue agency to write the profiles of cats looking to be adopted.
It's okay to go gently with your emergence back into the world
#3: Cup-maintaining practices for when your cup is mostly full
Start setting yourself some goals and making some foundational work to bring those dreams to life.
Perhaps think about signing up with a mentor or a coach for support and accountability on the journey. This was a big part of my journey; I wanted to talk to people who were further ahead in their dreams than I was. Paying for support also meant I could take up space in our calls and not feel guilty about it, which was exactly what I needed after giving so much in other areas of my life.
Go shopping in your wardrobe and find things that you love but have fallen out of your usual rotation. See if you can add a bit of colour or joy or find a way back to the you you want to be in the world through your style.
Come up with a more robust creative practice. If adult colouring books have become your crutch, try drawing, or playing with watercolour pencils or pens. If you like photography or knitting, start sharing things you’ve made. Let yourself emerge and be seen by the world again.
Get a pet. After six months of nursing my cat, Joe, back to health, I ended up foster failing him. He'd already been abandoned three times, I couldn't do it to him again.
Consider joining a club or creative community. I tried a few out for size and ended up in the Inspired Collective. The calls have become one of the highlights of my week and have given me something to look forward to.
Alright, I feel like I could keep going with this list forever, but it’s probably time to call it and skip prompts until next week.
If I’m totally honest, sharing this makes me feel a little vulnerable, but I’m going to push through the discomfort and post it anyway because it’s exactly the type of thing that would have made a big difference to me, four years ago. Here’s hoping it helps someone else out there, too.
Have a good week, friends. And please be kind; we never know what anyone else is going through.
All my love,
Cass xxx
PS: If you liked this post, you might like some of my others. Marshmallows and Nails is probably a good starting point. Or perhaps Lessons from Joe.
PPS: As always, if you want to chat further, you can sign up for a 1:1 creative mentoring session. We can talk about any of this or everything from the ins and outs of building a creative business to writing a memoir or book proposal. Feel free to check out my website for more information or hit reply if you have any questions.
PPPS: I think I’m going to put more posts like this behind the paywall in the future. If you’d like to read more and support me, please consider signing up for a paid subscription. You can also buy me a coffee, if you feel so inclined.
For now, though, thank you for reading. All your support is so appreciated and I am very grateful to you all for being here.
Thanks for writing this. So important. Last year I said goodbye to my best friends and children 🐶🐕🦺 one was sudden. But one was long. I spent a whole year sleeping on the floor and reduced my work schedule. By the time she passed I was a shell. I’d do it all over again for her. But it’s incredibly lonely and taxing. Important conversation on caregivers burnout.
My heart goes out to you, Cassie. Life can be so hard and yet, here you are, sharing thoughtful ways to help the rest of the world keep creatively themselves topped up. Look after yourself 💛