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Newbie -Carers UK Forum

Newbie

Tell us a bit about yourself here.
Hi I have just joined this group as I am finding caring really challenging. I care for my husband who has chronic liver disease for the last 4 years. He is older than me but not that it makes any difference. I am 38 and continue to work full-time as financially I have to. There is no other support from family so loneliness is a big part of my life. As well as working I attend all the hospital appointments an GP appointments otherwise he would not go nor be able to remember what was said. Our life revolves around hospitals and medication, he currently takes 18 tablets a day!!!!!
Plus I am trying to hold down a job and it gets really difficult.
Never realised caring was so thankless, lonely and hard work.
Hello Laura and welcome to the forum Image

Yes, caring can be a thankless and lonely task at times - but at least we have the knowledge that we're doing the best we can for our loved ones Image Have you and your husband had assessments from Social Services yet ? Your OH is entitled to a 'needs' assessment and you should have a 'Carers' assessment; both will highlight that (a) you are getting all the benefits you are entitled to and (b) any support that you need to continue caring.

Have a look around the forum and join in where you like. Any questions ? ask away, someone will have an answer and if not will be able to point you in the right direction Image
Welcome Laura, lots of good advice here and friendly people. I care for my hubby who has mobility problems and my daughter who has Downs Syndrome, my hubby is also older than me!
Social Services are supposed to support you, as a carer, to continue working - often there are things in your own area which are not publicised. Only SSD and service users may know of them. Also, make sure your home is streamlined to reduce the amount of work as much as possible. My favourite labour saving move was to do away with every flower border, and just have a patio and pots. Then there is somewhere at home to relax in, rather than staring at jobs! It's so easy to fall into the role of Superwoman, to prove that you can cope, regardless of what life throws at you. I tried this and became very ill. Now I advise everyone NOT to try to be Superwoman, to reduce the jobs as much as possible, and then see how many you can delegate to someone else! The other thing is to get SSD to provide some support so you get some "me" time on a regular basis.
Hi and welcome,

When I first joined the forum I thought I was the only carer who got lonely ... but quickly realised there are lots of lonely carers out there. This forum helps as only a carer really understands what caring is like.

Some like it, some hate it; but Roll Call is a good place to natter about the day to day/ over the garden fence kind of stuff.

Melly1
I sometimes think that Care = Leper.....

I've been very lucky in my friends, but to be honest, my bro and SIL are, I feel, keeping their distance. I know they're terrified I'll try and get them 'involved' in whatever I do in the end about MIL, and to be fair to them they have a lot on their plate anyway with complicated family, plus they went through two years of hell with my SIL's mum as she died very very slowly and difficultly of dementia herself. So yes, I can understand why they are keeping their distance!

But - it hurts. That's the truth. (Especially since I've helped them significantly about various things over the past few years...when it wasn't in my own interest to do so, but I felt forthem and wanted to help out.)(Of course my MIL is not their responsibility in the slightest, and I'm not asking them for help with HER, I'm asking them for help for ME!)

They offer good advice, but most of it boils down to Find Her Somewhere Far Away From Us and Keep Her There!!!!!

So, yes, like many here, I'm coping with MIL on my own, with the kindness of friends, and long-distance encouragement (and appreciation) from my BIL in the USA. My own family, to be blunt, 'don't want to know'.....(That's maybe a bit unfair, but I think it boils down to that, whatever they say - by email - to the contrary.)
Thank you to those who have replied to my first post. We have had assessments completed but all I got from it was some money to go to a spa for a day. Don't get me wrong that was lovely but it was a one off and my caring role is all day everyday. In terms of other help my husband gets a lot of support but I don't. I went to my GP to ask for help and was told I was one of life's copers!!!! Not quite what I was expecting I did come away with anti depressants and they help. I have found a charity that offers counselling and you just pay what you can afford but they can only give so many sessions and as the caring is long term it just feels like I need long term support but can't get it. Work are not too bad about all the pressure and time off I have but it does affect my performance which is hard to accept.
At present each night I go to bed I really hope I won't wake up because I am not sure how much more I can do.
Laura, SSD should have sent you a written copy of their Carers Assessment. Write and ask for it, if you were not sent one. My SSD are useless at paperwork and often write things which are simply not true! I have also been regarded as being a coper, and that sometimes means we don't get the things we should, unless we insist and are firm. Coping doesn't help us sleep better or worry less!
Hi Laura,

Just wanted to welcome you to the Forum. You will find lots of people who understand here.
Yes, caring and working are very hard but then so is the alternative. No money and even more loneliness. I know, I do both but I care for my mum juggled with fullish time work.

Good that work is understanding. What would make your life easier? Someone to husband-sit while you go out. Help with housework? Someone to talk to?

Have a look round the Forum and talk to us. We may be virtual but we can certainly talk Image

Take care,
Anne
Hello Laura, warm sunny welcome to the forum from me too!

I am no longer a carer but remember of too well what a strain caring can (and for me) was. Glad you have found us and as others have suggested, just join in as and when you want!

Bell x