I have been a carer all my life. As a child I cared for my mother who had epilepsy - having between 12-25 seizures a day. For that reason, I did not have an ordinary childhood, but did have the one that most young carers can relate to - one filled with worry, anxiety, stress. A childhood where I missed a lot of my education, was forced to look after my siblings, do chores, cook, clean, iron, run errands, do the shopping and spend a lot of time in hospitals.
This left little time or energy to socialise with my peers or enjoy my hobbies and as a result has contributed to much of the social anxiety I live with now as an adult. Even now in groups I often feel like the odd one out, just as I did as a teenager.
I am soon to be 41 years old, I am neurodiverse and live with mental illness created from my childhood. My son who has a learning disability, is almost 19, lives with me and I am his full-time carer.
When my son was younger I trained in the NHS and qualified after several years of intense study as a Child Psychotherapist. I especially enjoyed working with families who had children with complex needs and disabilities. However, I was forced to give up my hard-earned career when I became a single parent and could no longer manage caring for myself and my son and hold down a full-time job.
My son has depression and his needs began having a huge negative impact upon my own mental health. Especially as we were both trolled online and subject to disability hate crime – we receive threats, abuse and our home has been vandalised. Eventually I sought help from social care when things hit a peak and both myself and my son felt suicidal and as we could not cope any longer.
We were appointed a family support worker called Lucy who was amazing, a worker called Kirsty from Victim Support and referred to Hayley at Carers Leeds. Hayley worked with me in private 1:1 sessions where she helped me separate out my role as a mother from that of being a carer. She worked with me at my own pace so I could understand how caring for my son was impacting upon me as I was always putting his needs before my own.
Like most carers I would feel immense guilt if I did anything without him or spent any money on myself. I had withdrawn and become so ill I rarely the left the house and was depressed. I hadn't realised how much I was neglecting my own health and needs. I began socialising again, slowly at first, going to a drama course at Carers Leeds which helped boost my confidence again.
Sessions gave me space to think about how I could communicate better with my son and help him gain independent living skills, so that I could take time out for me and look at how to create and build support networks.
Now we are working with social services and have a great social worker. She is helping is navigate employing a personal assistant (PA) or a support worker for a few hours a week through direct payments.
An idea of a typical day for me as a carer looks like this:
- Helping my son prepare for his day, what to wear, prompting him to wash and dress appropriately, making sure he knows the route he is using, has spending money, his phone and bus pass etc.
- Escorting him to the GP or dentist, showing him how to check-in, fill in forms for him, or helping him know what to say to reception.
- Talking to him to keep his anxiety levels down, reassuring him, listening to his repetitive talk about the one subject he is interested in.
- Helping him navigate routes around a building. Showing him where toilets are, where food is sold and helping him make purchases and budgets.
- Opening his mail and helping him read, sign or complete any actions, taking his calls and emails.
- Checking and managing his finances and bank account.
- Helping him prepare his lunch.
- Preparing his evening meal.
- Talking to him about his concerns about his day.
- Making sure his clothes are washed and ready, making his bed, making sure everything is in its designated place at home so we can navigate tasks easily.
- Prompting him to brush his teeth and use the toilet.
Being a carer is challenging and me and my son are constantly learning from one another and changing and adapting according to each other.
To look after myself I have had to learn to not put too much pressure on myself and make unrealistic expectations. Some days we have a ready meal, some days I am tired and feel low myself. We have to remember as carers, it is not like a paid job, we do not get recognition, social understanding of people saying “Oh yes, you’ve been working all week have a rest, paid holiday leave, days off”.
Instead we are on call 24/7 365 days a year. When I am sick no one is there to care for my son. When I am low no one sees it. When I need caring for I can be overlooked. Being a carer can feel like a terrible burden. It limits what I can say yes to and any spontaneity in my life. I have someone else to consider when making any decisions and it can be exhausting thinking for two people.
So be kind to yourself, don’t feel bad when you take time out to go for a coffee, go to the cinema, go to a local club, a day trip, or relax at home. Your time out is like recharging your energy for the next time your loved one needs you. You’ve dedicated your life to being a carer, not everyone can say that, hold your head up high and stand proud knowing the rest of us carers stand with you. X
Emma aka blueglassesgirl is a neurodiverse mother and freelance creative coach. She is a carer and a disability activist, who consults on ways to improve accessibility for the disabled within arts and culture. She also likes to create art and perform stand-up comedy.
You can follow her on Twitter, Instagram and Facebook, just search Blueglassesgirl.