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Looking after my wellbeing as a carer

This week is Carers Week, and one of our Parent Champions reflects on her journey as a carer of her child with a disability, as well as previously being a young carer to her parents.

I can’t remember a time when I was not a carer. I had older parents and, growing up, I had always felt protective towards them. From an early age, I took on a lot of responsibilities at home. Although I did not see it as a caring role, it was housework, cooking, shopping and cleaning, in addition to schoolwork. I then went on to university, but would come home every weekend and moved back home in my final year to care for my parents.

Not long after losing both parents, I became a parent myself. I have an amazing child with a disability, so my caring responsibilities have continued.

Looking back now, I realise how lonely it is being a carer. As you become consumed in your carer’s role, others around you step away – and at the same time, you start to isolate yourself from the outside world. People who were once in your life suddenly become very busy, or don’t call you as they did before. You also don’t have much in common with them, as you are a carer for someone who constantly needs and relies on you for survival.

If your friends have children who do not have the same needs, they don’t understand when you can’t meet them for a coffee or keep in touch with them as before. Where once you had parallel lives with your friends and family, your lives gradually become more far apart than ever. This is when the loneliness sets in, impacting on all areas of your life.

Having a child with a disability has not been easy, as every day can feel like ‘groundhog’ day. The whole world around you is moving forward, but your situation and your child’s disability stays static. They achieve their milestones very slowly, you make very little progress to give them independence, and this lack of progress is more evident as they grow up. But the joy they bring to your life is immeasurable.

I have been told that nothing prepares you for being a carer. But maybe my caring role for my parents when I was a teenager prepared me later on to look after my child. It is the hardest and most challenging job I have ever had. You cannot take a break, it’s personal, it’s a 24/7 job, and you never stop worrying. Everything you do revolves around their care needs and, even though they don’t mean to, you feel controlled as your life is not yours any more. You are physically and mentally exhausted all the time.

Your own mental health and wellbeing is not a priority, as you are busy supporting the wellbeing of others around you and meeting their needs. But over the years, I have learnt to have better mental health. Although I am still a full-time carer, I have learnt that I should not treat it as a job – so if I fail or get things wrong, or have a bad day, it does not matter. I have come to realise that not everyone will empathise with my struggles, but those that matter will understand. It’s been a long journey, with lessons learnt and more to learn along the way.

I have come to realise that loneliness is not about the number of people you have in your life, but who you can actually share your thoughts and troubles with – and without being judged. I am now surrounded by people who make me feel less isolated, even if they are not going through similar struggles. I would not change my life or have things any other way, as my experiences in life have defined me as a person. They gave me the resilience and strength to deal with the challenges ahead of me.

When I get caught up looking after others, I have to keep reminding myself that I too need looking after. That way, I support my own mental health and wellbeing – because I too matter.

Our Parent Champions support us to ensure that the views and experiences of parents and carers help shape how we deliver our mental health services.