I’m a parent carer of Oscar aged 9 with complex health needs, autism, ADHD, dyspraxia, learning disability, absent seizures, ODD, and an eating disorder. We are allocated 4 hrs a week of support via direct payments and struggle to find a PA. Oscar is considered low care and low mobility despite being under complex teams in London and me being rubbish at conveying his needs on paper not one person has even read them because if they did he wouldn’t be low.
Oscar has only just started a respite of 3 hrs once per month at the Disability Center.
I am making it my mission this year to sort out our support.
About my own role as a parent carer, how this affects my household and relationships with my family, and share some comments I had from fellow parent carers that I’ve had on similar posts.
The truth is the term parent/carer is a divisive argument and one we don’t usually address in our house as it usually will end in a discussion, and a heated one at that!
Some facts and figures if you’re lucky enough to not know:
Based on 2022 last head count there are 10.6 million unpaid carers across the UK.
And 4.3 million people a year become unpaid carers.
1 in 7 of those juggle work and the caring role.
Being an unpaid carer has a huge impact on health and well-being, more than 29% report feelings of loneliness and 27% have a disability themselves.
Unpaid carers also have financial strain, in our case, my husband works two jobs as I’m unable to commit to a full-time role as I’m required to be on hand for Oscar at all times.
It is noted that in underrepresented groups all of the above figures are marginally higher.
Carers allowance is available for anyone in the caring role for 35 hrs a week or more and earning less than £132 per week, the carers allowance payment is £69.70 per week and if worked out into an hourly rate would be 41p per hour!
My experience as a parent carer full-time
For our family this is a topic of huge debate, my husband feels I do not work and that caring is not a job, I disagree but where is the line? For me the line is very simple, the areas of Oscar’s additional care that are part of his disability that he is resistant to, hygiene, medication, night waking, unpredictable dangerous behaviours, constant supervision, attending therapy, home therapy, additional transport, research, being constantly available for numerous professionals that don’t communicate, driving around numerous chemists to find the meds we need as the prescription is wrong, parent carers often work under extreme pressure to meet needs they are not experienced to manage, its crisis work at first and the average time to accept that role mentally is around two years, it is 24/7 no days off, support is low and the role is unpaid.
It removes your freedom and although you do not begrudge being a carer for your child, it is tough, as until you meet someone who is in the role who understands the complicated emotions around this, understanding of the role even in relationships can’t be met fully in my view.
I asked a question on my social media about how people experience being a parent carer and had an overwhelming response from fellow carers.
Most responses included feeling lonely, misunderstood and not included in society, but also a self-build community and an ability to grow and be more robust as a person because they have had no choice.
One reply really got me thinking and I’ve copied it below written by a fellow parent carer.
When you can’t meet your own needs and the other persons needs as easily compared to someone in a non-caring role or an atypical child. All parents are carers. You can’t just get a sitter, for me I’d say my emotional and social needs were unmet which in turn affects everything relationships and how you parent. I’d say single parents that are carers with little support are the worst affected in this scenario literally no one to share the load and every decision is on their own which is a lot of pressure in an already difficult situation.
As a fellow parent carer I hold space to make allowances for everyone’s journey, what one person faces within their skill set is not for us to judge there’s no hierarchy of disability, in truth the emotional tolls on caregivers remain high and that’s something we all share, it’s important to understand everyone has different levels of skill and tolerance and their own health and well-being and everyone has a limit.
I do believe firmly we are the backbone of society as a collective, and we are stronger together to challenge social norms and preset ideas about the caring role and raise its profile.
Being Oscar’s parent carer is something I don’t take lightly, I will advocate for him until my last breath and fight for his right to fair assessments, adequate services and a place in society, and I like to think that the work we are all doing is slowly changing the conversation and landscape of social care for generations to come, that said I’m a person, an individual I had a long career previous to Oscar in a fostering referrals team that I hold many transferable skills, and I feel I would like a little more support in my role as a carer, as it’s not a one-man job and also so I can get a little part of myself back before she’s gone forever.
This is a topic that will evoke emotions in many, as I’m aware there is a large number of parent carers out there doing such an amazing job.
My view is our government needs to be doing far better for us all collectively and for our children who are going to be adults one day.