My son was born by emergency caesarean in Oct 2005, I was working full time and had a shared ownership property . He spent most of his first year in and out of hospital with heart failure, lung disease, failure to thrive and then later diagnosed with a rare syndrome.
Due to being a single parent and my child being so poorly I had no choice but to give up my job and subsequently lose my home as I could not afford the mortgage repayments.
I private rented for 12 years with support of legacy benefits and tried to work part time as well as studying, completing a level 3 diploma in Child and Youth Workforce.
This was all quite a challenge as both my parents had passed away in 2009 and 2012 leaving me with no real support system. My son also had complex high needs and challenging behaviours, so life was tough going.
When my son was 16 and a half, he went into a local Shared Care respite centre to give me a break from my caring role. This then came to an abrupt end the day he turned 18 leaving us with very little support again and me a very worn out carer doing most of it on my own again. I decided that for his and my future it would be best if his name was down with a local residential placement because the pandemic made me realise that if anything suddenly happened to me my son would have no one that would advocate or fight (because that is what we tirelessly do for our young people) and the outcome for him could be very scary.
Fast forward to our current situation. My son has been offered a full time supported living placement which on one hand makes me feel relieved that his future should hopefully be secure but on the other makes me emotional that due to lack of support in adults I am having to make this decision when he is only 19 years old. I am currently trying to make this transition go as smoothly as possible for him but it is hard to just focus on this because I have the constant stress and worry of how my life looks once he has moved out.
I have been advised by Universal Credit that as soon as my son moves on that they will pay my rent whilst I search for employment and receive the single person element of £390 pcm minus the bedroom tax which I am expected to pay my bills, buy food and run a car on less than £300 a month!!
I am nearly 55, I am totally worn out from years of caring for my complex needs son. We do not get weeks holidays, we do not have the luxury of taking time off when we are poorly and we definitely don't have someone take over our shift to give us a break. We do it because we love them but people do not understand the sacrifices, stress and pressure it puts on us and now because we are doing something to make our lives better we are being penalised.
Every day I am worrying how on earth I will make ends meet once he leaves as let's be honest at my age I am not going to walk into a £40k year job. Where is the compassion for people like me. Surely there should be a bridging gap for us to get back on our feet as I can see myself spiraling into debt trying to make ends meet.
The system needs to change and people need to be made aware what us UNPAID CARERS really do.
A worn out and worried mum and carer
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