Michael's Carer Story

I was still young and in secondary school when I found out Mum had MS. She’d been ill for a while and I’d grown up with her having Crohn's Disease, so although ill health wasn't the unknown, the severity of this disease threw me off balance. It was approaching GCSE time and I remember acting up in school.

I was provided with counselling, and referred to my local young carers group, a life line at the time. The opportunity to be around other under 18's who were in similar situations was a great boost, both for my confidence and emerging desire to socialise with others my own age. Their support workers visiting me and going on trips to cinemas and theme parks prevented me becoming isolated at the time. Amazing!


After scraping through my GCSE’s and heading off to college, my Dad announced he’d be leaving us for a new relationship. This was a huge blow for us. I remember waking up day after day to the sound of Mums painful crying. As an only child and at the time confused about my sexuality, this was yet another stress I didn’t need.


Mum’s health worsened and one day she unfortunately had a major haemorrhage and was rushed to hospital, it was touch and go for a while. Once discharged she was bed bound for months and relied on daily carers at home. Previous to this, she’d coped with support from me and her peers – but this was a new depth of ill health I simply wasn’t prepared for. The close bond between us was closer than ever and I saw and engaged in more personal care tasks I had hoped to avoid. I hope that doesn’t sound harsh, but there’s naturally a clear barrier between what you want to avoid as a young male. Mum suffered from incredible pain and spasms and relied on me rushing to massage her legs or using the TENS machine when this happened, I felt on edge all the time.


My mental health crashed and to some extent has never really recovered, I spent months without leaving home at all and became so emerged in what felt like this impossible pit of despair and hopelessness that I could never imagine escaping. I already had a diagnosis of Asperger’s Syndrome from my early childhood and this new depression worsened my anxiety and panic attacks. I became suicidal and ended up in front of psychiatrists and talking therapists like counsellors and psychotherapists who helped me get back on my feet.


More recently my Nan suffered a stroke and I was there again to provide her with care and support, as both Mum and Nan are only children and other family are either far away or in Ireland. This involved getting involved with social workers, arranging her home care and selling her property to fund long term nursing care. It’s a devastating thing to be involved in, watching someone you love lose their voice and have repeated trips to hospitals through seizures and infections. Even more hard and a huge responsibility at only 21 years old.


Last year the council agreed, after a long battle, to extend the ground floor of our property and build Mum an accessible bedroom and wet room. This was huge, life changing and far more than you could imagine. Accidents, lack of privacy and using commodes was a thing of the past. It always shocked me prior to this how long it took and that people could be living in a modern society without access to a toilet and wash facilities due to disability. Mum gained her dignity and independence back.


Caring is hard and I never think we should try and sugar coat it. Denying my feelings is what caused me so much pain previously. Talking about your mental health is hard, but even more so for a guy. I’m grateful now to have more support than I ever did and have a great network of family and friends surrounding me. I’m taking a good combination of medication to manage my mental health problems and have a good long-term counsellor who is able to understand me and challenge my thoughts if things start going downhill. I think this network of support along with being prepared for most emergencies keeps me going. Take time for yourself too and celebrate the small things (could be a dog walk, TV show or baking a cake)!


If Mum’s health deteriorates and she needs more care from professionals, or to go into hospital, we’ve discussed that and had difficult conversations about capacity and even scarier subjects like death.


When lockdown came I stumbled across Mobilise and thought how great their personal approach was. A cuppa with some carers? Why not? Give it a go. Especially if you’re a male under 30, we’re underrepresented in this area, but we do exist. Never be afraid to reach out for support, there’s so much out there and social media allows us all to be more connected than ever before. No one should ever be alone in their personal journey through being a carer.


Michael, 26, Birmingham




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