Caring for the Caregiver

In my work as a clinical psychologist and writer I have been developing a program to help mothers learn to be kinder to themselves. However, no one could do with sending kindness their way more than caregivers of children with complex needs! I have adapted six self-kindness exercises based on my work and life as a carer of a child with complex medical needs.

Caregiver stress and hovering near burnout can make it very difficult to find the space to look after ourselves, but if we can start with small steps, we can hopefully find ways to send a little care our own way when we are in the midst of caring for our children.

Here are six tips:

1. Take a breathing space. A moment when you can take a few deep breaths and just concentrate on the breath leaving and entering your body. It can be just a few seconds and it doesn’t matter if your thoughts jump around elsewhere – just gently and kindly bring them back to your breath. Doing this allows us to connect with ourselves. Often we don’t have the time to even notice ourselves when we are managing so much. This mini breathing exercise is a small way of saying hello to yourself while life is so busy. You might find that this makes you tearful since we can end up ignoring our own needs and emotions so much that they don’t get much chance to get fully felt. If you do find yourself getting tearful, that’s OK. It can happen when we are stressed and we stop even if just for a moment. It could also be your body helping you out by giving you a sign, a clue for how to help yourself. Maybe you could do with more breaks? More respite? A chance to talk to someone about difficult feelings? Maybe you are sleep deprived? It can be a chance to reassess what you do need and look for ways to meet those needs.

2. Get outside. However you can manage it, try and feel the fresh air and the wind on your skin at least once a day. Some days I am housebound with my son, and the only time I might feel the fresh air is putting the rubbish out. But I stop, even if it’s just for a heartbeat. That moment lets me connect to nature and allows me a space to step away from the tasks inside.

3. Get a support group whether in person or online. Life is hard enough without feeling alone in the complex difficulties you face on a daily basis. It’s unlikely you will find a family that is exactly the same, and making friends with fellow caregivers is not without some tricky dynamics, but being able to vent or ask questions even through online forums can be really helpful. I overdid it and joined so many Facebook groups that my entire feed was about medical issues and I had to rebalance it a little by “liking” lots of other random things just so it wasn’t all about complex medical needs! Give it a go, find your own balance, and know that it might go off kilter sometimes, but it’s all working towards limiting your stress and finding ways to help yourself.

4. Help someone else. This is totally counterintuitive when you are juggling so much, but I found that when I was finally able to cook a meal for another family going through a crisis, offer advice to someone else, or lend a practical hand, I felt a sense of relief. It reminded me that I am not powerless; I am not “only” the recipient of help and a carer. It might be that you are already helping lots of people already, but this is a chance to help someone out with the conscious intention of also helping yourself out. So next time you feed a neighbor’s cat, take your mum to an appointment, or listen to a friend, take a moment to feel and notice what you are doing, and appreciate your kindness and care in the many roles you take in life.

5. What makes you smile? What makes you laugh? Or if life doesn’t hold too many smiles or laughs, what used to make you laugh? Can you make sure you make time for it at all? Try setting yourself the chance and time to read a funny book, speak to a funny friend, watch or listen to a comedy program, maybe even go to a comedy night (this last one is on my “to do” list for when that’s possible). Some people even suggest that the act of smiling can help lift our mood; it might be worth a go.

6. Learn how to be gentle to yourself when you feel the sting of any angry or bitter resentment and pain. I know that I have felt all those things during our journey, and I’m sure I will feel them again. It’s human to feel angry at unfairness and pain at what our children suffer – and what we suffer as well. Sometimes the angry thoughts can end up being directed at partners, friends, ourselves or even at our children. It’s important that we remember that thoughts are not the same as actions; they do not define us. We are “allowed” to think and feel all sorts of things, and that’s just what we humans tend to do. What matters is if we get caught up in seeing ourselves as flawed in some way because of it, or if we feel guilty for having difficult thoughts. If you do start to feel bad, take that breathing space, give yourself a little pat on the back, and remind yourself that you are OK, you are human, and it’s understandable to feel the way you are feeling.

Charlotte Hartley-Jones is a clinical psychologist, writer and mother of three young children. She is writing a book for new mums about self-kindness and hopes to write a version especially for parents of children with complex needs based on her own experiences of being a carer of a child with complex needs.