“Aren’t you entitled to respite? My sisters pals daughter who has a son with Autism gets respite. Yeah, he goes away for a weekend once per month so they get a break. It’s really good. You should look in to that……..”
I’m not sure what the general understanding of respite is but I can guarantee respite is not what you think it is.
In order to be eligible for respite you need to go on a waiting list for a social worker. When you have one of these you will have to go through an assessment that will go over every single part of you life with a fine tooth comb. If you didn’t have a mental health problem, this process will soon make sure you do. Corporate gaslighting at its finest, this assessment is designed to break you. This assessment will look at things like, if you have family and friends who can take on some of the care. If not, why not? Nice eh? Nothing like a good old form to kick you when your down.
The outcome of the report then goes to a panel and strangers who have never met you read through your struggles in black and white and decide on how many “hours” you are entitled to based on what your life looks like. This report is of course subjective, and relies entirely on your ability to communicate your needs as well as the ability of the social worker writing it. But when you are exhausted to the core and eventually awarded 4hours once per week after years of “fighting”, those hours don’t even skim the surface.
Oh and there are very little in the way of support providers so guess what? You are now going to become an and employer. Congratulations!!! There is a whole other set of skills you will have to learn on the hoof. And a whole other level of responsibility you now have. You are in charge of all the admin and organisation of said respite (but none of the control) so those 4hours you thought you got, aren’t actually 4hours, because you have admin to do and everyone wants a meeting with you to discuss how you will use your hours. And once it goes in the plan, don’t even think about changing your mind, because your not allowed to have a flexible life anymore, because your life does not belong to you. It belongs to systems and processes and panels.
Your life is held at ransom to goodwill and charity and there is very little you can do about it other than suck it up and get on with it.
Before I had my daughter I was naive. I just assumed that those who needed help got it. I didn’t anticipate having to beg, plead, cry for help to social work for them to say can’t “xyz” help you? Have you asked “xyz”?
You are expected to give up all aspects of your life to fit around your caring role. Thrust into a poverty trap. The work life balance is delicate to manage. I’m lucky I work, but that’s only because of my partner’s sacrifice.
Acute issues go away: they get better. Our issues are long term. They are deep rooted. My little girl will never get better and I will care for her until the day I die, but I’m being tortured along the way by reports that are long and drawn out, by services that are smoke and mirrors. I’m telling my story again and again and again and signposted round it circles. I always land on someone’s desk who says “it’s not my job”. It feels more than a fight for support, it feels like a fight for survival. Carers can’t get sick. It’s not a luxury we have. I don’t want to feel like a burden. I’m fiercely independent but love alone doesn’t fuel your body to be everything to everyone it needs to be. If my body could run on love alone it would never fail me. But it doesn’t and I can’t.
I am strong but I am broken. Yet, throughout my vulnerability I see with clarity. My voice is my strength, my stories will change the direction and form a path to salvation. Respite needs to be in abundance for carers. Accepting a poor quality of life normalises it.
Carers need respite
Our loved ones need digital passports.
Emergency care plans ( that work and are practical and not just reliant on the good will of others)
Access to carers services
The right to regular breaks. Daily breaks.
Hands on practical help and support.
We need access to the equipment we ask for because we need to be able to protect our bodies.
We need access to an ordinary life. We shouldn’t be expected to settle for less.
Social care is everyone’s problem. We will all need support from this service at some point. Don’t wait until you need this service before you demand better of it because by then it will be too late.
Are you a carer yet?
Millie's Movement 