Who cares for the carer?
To mark the end of careers week I wanted to blog and share my journey and feelings as a carer to my child, I've read a few amazing blogs this week, one in particular resonated with me by Lucy Parr, she speaks about her own sacrifices her torment and we all share levels of that, In truth carers get a shit deal here's why.
Becoming a parent is fantastic, becoming a carer and being a parent are two different jobs here's why .
Some people become careers to a spouse in later years again same rules apply no on the job training, have to separate emotions from partner to carer is so tough, tougher than parent career I feel as its a totally new normal and shift in relationship, with little support available and budget cuts are at all ends if the scale for live in carers, and its more isolating as we are all aware that your later years in life are more donating and lonely. I wanted to touch on others carers too as I'm aware not everyone is a carer just for a child .
When I became Oscars primary carer ,Was I qualified to manage complex Autism,Epilepsy, extreme anxiety, difficult behaviour and violence? No i was not, was I offered on the job training? No I wasnt, information yes, actual training? No I wasn't. Was the post optional? No it wasn't. Did I apply anyway? Yes by supiner, would I apply? Yes of course no question I'm his mum .
But it is hard and its ok to say that ,I had a life before and a career, and that was a loss to me ,as I was respected and I loved my job. I love people, I loved the social elements .
Being a carer has changed me forever, my life isn't mine I am awkward in social situations and I guard my real feelings, as a tough exterior is required, I'm constantly preoccupied, your a carer, a mom and a PA. 24/7/365 , careers and young carers get a raw deal overall, you are left to identify the services you are entitled too, so far I have created a good support network ,and I do pay for private therapies for my son, so they are consistent, in truth all services are so sparse that if I didn't pay for this help and support, it wouldn't be there, which makes me very concerned for the future, if the support isnt enough in early years for us without paying, this surely can't be financially sustainable for his whole life. 💙
I do worry about that, an example of the charges so far, that I don't begrudge, but I do wish our government would stop being short sighted when cutting budgets for the most vulnerable, currently OT privately is £75 per hour, and private speech is £45 for £45 minutes both invaluable services with accredited committed professionals and totally worth the money, but heres the thing not everyone can afford it, that doesn't mean it isnt needed, if the services that these complex children need were to be available on the NHS ,it would mean every child had the same chances, there is guilt attached to being able to just afford private services for my son, however I'm not going to not put them in place for him, but the guilts there.😔
He is making much progress which is amazing, but I do see the children being failed, I'm observant of that, and this is guilt as his mum and also his carer, and the job is one of the same, but sometimes you have to put your carer head on, leave your emotions at the door and get on with it, if it's health stuff ,I've had to hold him down for tests before, if I was in mum mode I would cave, that element of being a carer is the overlooked part, its tough and its tuff! 😩
THE DOWNSIDE OF PLAYING THE GAME😔
It seems if you do pay out for the therapies that are consistent, the inconsistent ones withdraw, but the waiting lists are so high, we waited almost two years for feeding clinic and despite me asking for OT for my son for almost 4 years! He still hadn't been offered any on the NHS. Because he's not deemed severe enough! We were referred for a sleep EEG in December last year as an emergency we are still waiting! All of that stress is on me as a mum and it's down to the carer in me to coordinate that, with services being more up in the air and under threat than ever before, I really feel I've got to have my own back ,as I face being a carer now for the rest of my life and have started planning already for Oscars care beyond that too, that's a hell of a lot for a parent carer to carry around ,and that is why parent forums and support groups are vital for support for me .👍
This is an example of the stress levels carers face because the failing service, then creates guilt, as you know your child deserves the help, and it isn't the case that professionals don't want to help , the cuts these services face, ties their hands ! HATE THE GAME NOT THE PLAYERS 🏉
That's just one area that careers face, theres daily care, changing a messy nappy of an almost 6 year old is my biggest challenge! Of the personal care element as he wants to fight me to get away, were talking adult poo basically, and its a job I face alone ,and to be honest I'm just sick of buying nappies and wipes and packing a change bag wherever we go, not because of cost but because it's getting harder to change him when at home let alone out, and I just find ,I don't want to have to worry about that and I don't want him getting sore again this summer .😳
I think there's so much parent careers do that can really get you down, you have accepted it ,but it's ok to admit it gets you down, as its never ending and you can't celebrate milestones, something that is hard for parent career as its not just a job you visit the emotions as their mum, the truths are hard to digest sometimes but you cant take a breather mentally or physically because you are solely relied on, the most important job in the world forever.❤️
And I think by picking my battles and planning well is the only way through for me.
This blog isn't just about my challenges mentally, it's to say I recognize every single other parent carer and there challenges, the isolation, the frustration, the neglect of yourself physically and mentally, the lack of freedom, worry consumed you, you feel guilty for your other kids, I honestly relate better to other parent carers in so many ways, as I don't need to explain, I can be preoccupied, I have great friends they have all got my back I know this, but ultimately I dont feel alien when I'm with other careers, its unspoken they get it, we are ourselves but not who we were, we have guilt, grief, loneliness, isolation, pride, endless assessments and reports, multiple professionals, multiple meetings, health appointments the list goes on and there no need to explain .🌈
If you are a parent carer reading this, if love your view on how it effects you ?💁♀️
I recently found myself asking ,whos loving me? as a carer ?but in truth the only answer to that is ,or should be is you , yourself! You have to give yourself a break over all, as if your worried about how your doing, it means your doing a good job, own it,💙❤️
Finally I just want to say, I didn't ask to become a carer neither was it in my life plan to have a disabled child , but Oscar is my biggest achievement and I'm beyond proud of him, and I'm beyond proud of my family for being so flexible and advocating for him always, and being willing to learn with me,as we progress and grow together as a special needs family .🥰
Full respect to fellow careers and young careers, you inspire me to be better and to want more .😇
My hope for the future of our carer services us that someone!!!!! Figures out that cutting services in early years, which is proven to be very successful engagement and progress for Autism, to cut these services in the young leaves a whole generation that will be tapping into an already failing adult service pot of money! It's counter productive! 🤷♂️
i do not have two heads I just mostly do