There are 6.5 million carers in the UK and 6,000 people take on a new caring role every single day. Findings from the report, Prepared to Care? show that vital support is not being made available to new carers from the outset.
My experience as an MS support volunteer has brought me into contact with many people who care for someone with MS. Their stories are all different, but there is one recurring theme – their isolation and lack of joined-up support. They feel they have to fight their way through a complex, bewildering system and are unable to access all the services they need to support them in their role.
81% of carers in the report felt unprepared for the emotional impact of caring and 71% were unprepared for the change in relationship with the person they care for. I have a friend who often feels that the entire focus of support is for his partner, who has primary progressive MS that has left her housebound. They live in purpose-built accommodation, which although ideal for his partner, is unsuitable for him as it is far from transport links and shops.
The only respite he has is when a paid carer comes in for two hours a day, but as he explained, by the time he walks to the bus stop and goes to town, he has to turn round and go home again. He has also had to give up work, as 45% of carers find they have to do to continue in their role as a carer. He now leads a very lonely, isolated life and although he adores his partner, he feels increasingly frustrated.
92% of carers feel more stressed because of their caring role, a damning statistic, and one that can only be reduced by providing good quality practical and emotional support. ‘Prepared to Care’ recommends that there should be better public understanding and recognition of carers and that they should have access to information and the right support from the very beginning.
Carers are the forgotten heroes. Perhaps we feel it will never happen to us, but anyone can become a carer and most of us will not be prepared.
Fully agree with this post. Carers tend to get forgotten, with the spotlight always being on the sufferer. Yet MS affects everyone close by. Unsung heroes? Every last one of them.
Hi James,
Thank you for your comment! In my experience, yes, carers can feel forgotten and you’re right, MS really does affect everyone in our orbit, not just us.
Luckily, I don’t need a carer, although my mum helps me out hugely when I’m tired or having a bad day, but even then I feel guilty as she’s got her own health problems too.
x
A very important post and thought provoking.
Me and my husband have had serious discussions about the future and although he dismisses what I say, adamant he will stay and care for me, I do not want him to feel frustrated, unhappy and stuck. It frightens me no end thinking of him like that with my son as a witness.
He married me, not my disease. If MS takes too much of me away from him, I want him to be able to leave if he needs to. No one wants to have these discussions but I’m too practical for that.
Xx
Hi Sam,
I know what you mean. I think anyone’s first thought after being diagnosed with MS is ‘will I need care?’. Not all of us will, but we don’t know our disease progression, etc.
My mum tells me that when she was caring for my dad who had PPMS, he told her many times to leave him. She found this very upsetting, but understood what he meant. They were both so young (my mum was 28 when she was widowed) and it was a huge task for her to undertake alongside bringing up children.
It’s great that you and your husband can have such open discussions. He sounds like a great support.
X
We try not to think to far forward, but I worry for my children and husband. I don’t wont to stop there lives, even if mine has. But, What, If !!!!!!!!!!!!!!!!!
Know exactly what you mean Tricia! It’s a big guessing game. None of us know quite how MS is going to affect us…..
X
Oh, dear. Yes, this is a fear I have. Since starting my job, I’ve been looking into long-term care, which would kick in if I ever needed care beyond what my husband can provide. It’s awfully depressing to think about, but I don’t want him to take on more than he should. Of course, it’s hard to get LTC and it’s incredibly expensive. Been burying my head in the sand a bit on this one, I’m afraid.
Enjoy what you have right now! We could spend our lives worrying, to no avail. We just don’t know what’s round the corner. I know plenty of people who have had MS for decades, and they still get out and about, despite everything. Fingers crossed, there’ll be a cure in our lifetime.
X
You are SO right. It’s sometimes a struggle for me to “be in the now,” if you’ll forgive the cliche. Especially as I grew up in an *extremely* practical, sensible, plan-for-and-worry-about-tomorrow family. But there is no reason to expect the worst. Must remember that!
It’s the hardest thing to do!! I worry about everything all the time and have to calm myself down, lol.
X