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New - Carers UK Forum

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Tell us a bit about yourself here.

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Hello everyone!

I'm Carole, I look after my mum, who will be 92 next March, and (attempt to) work as well. Mum suffered a left-sided stroke a few years back that left her disabled, and, after a hospital admission for pneumonia earlier this year, added a new diagnosis of Parkinson's to her collection of ailments. While in hospital, she lost almost all of what little mobility she had, but is doing her best and in many ways is stronger since having the Parkinson's medication, so still rehabbing as much as is possible within the limits of her current care plan, which, if followed to the letter would be leaving her bed-bound virtually 24/7. I know - she needs a review, but Social Services round here are a law unto themselves.

My dad who is 89 lives at another address ... he's not the easiest person to help, but is insulin-dependent and probably in the early stages of dementia. As I say, he's not easy to help, so I try to keep an eye on him from a distance, keeping my fingers crossed against disasters!

I don't normally like to mention that I suffer from autoimmune problems myself (Graves disease, eye disease and an as yet undiagnosed inflammatory arthritis) ... I'd really rather ignore it, but it does affect my ability to care, particularly when I'm in a flare, so I suppose I ought to mention it!

It's good to know that there is a group offering such great support!

C
Oh my goodness -a double helping of caring on your plate. That is a LOT to digest....

I do hope that you are getting ALL the support you need - others here are expert at knowing what you are entitled to, and also how to get it (not necessarily easy, as you'll already know, as all too often one has to force the authorities to do their legal duty.....)

I hope you manage to get at least a little time to yourself, especially over Christmas. Please don't sacrifice yourself too much....

I picked up a wonderfully true saying a little while ago ... "There's no point setting yourself on fire to keep someone else warm" (or, in your case, two people.....)

Kind regards, Jenny
Hi Carole and welcome!
My parents are both in their nineties, and are supported by my siblings and a team of cheery care-workers. I also work, part time. What kind of job do you do?
I live up in Scotland and care for my son, who is 20 and has Downs Syndrome and Diabetes Type 1. Which doesn't set him back too much: he is a very fit and capable young man who loves to ski and sail. Albeit he likes to sleep. A lot, :roll:
Hi Carole
Just wanted to say Welcome to the forum :)
Welcome to the forum. Are you getting any regular planned "me" time? The easiest way to activate Social Services is to write a formal complaint to the Director of Social Services. Such complaints have to be counted annually. If that doesn't work, mention the word "Ombudsman". When I had a problem that was being ignored, in the end I wrote to the leader of the whole council, who coincidentally knew me, and said that if it wasn't sorted in 7 days I was going to the Sunday Times. He knew that I always stuck to the facts, and wouldn't give up. Ultimately, he told the County Head of Learning Difficulties and the County Complaints Offider to "clear their diaries" and meet me whenever it was convenient for me. This was a turning point, now I am allowed to email the Head of LD if I'm ignored locally!!!
Hi Carole,

it sounds like you have your hands full. Caring when in pain yourself isn't easy (I've had osteoarthritis since my mid 20's.) Fetching and carrying can't be easy.

Social services are a law into themselves around here and only make contact when they need to tick a box or cut a budget.

I hope you enjoy the forum.

Melly1
Thanks All, and sorry to be so long getting back! (We had a few problems with the care agency management over Christmas, and I'll admit that it all got on top of me a bit ...) Just reading people's stories on here, though, I'm amazed at what people cope with, it's inspirational!

Scally, I work for a one of the big universities, full time but on adjusted hours partly due to my own health, but it wouldn't be possible to look after mum at home without ... so I leave for work at lunchtime and come home late. Have to admit, though, I'm finding it very tough at the moment!
C
C_1412 wrote: Scally, I work for a one of the big universities, full time but on adjusted hours partly due to my own health, but it wouldn't be possible to look after mum at home without ... so I leave for work at lunchtime and come home late. Have to admit, though, I'm finding it very tough at the moment!
C
Glad you came back: we do get quite a few folk who post once and then disappear, which grieves me, because it means we failed them in some way.
Carers UK is a sort of hub, a gateway, a support and campaign network if you like. Run by carers, for carers. We don't try to do it all, because on a modest budget of around £4M a year that would be silly, but we can offer some genuine expertise, and continually campaign to improve matters through legislation.
Not a sticking plaster, which is what many folk think we are.
Caring situations like yours (and mine) are very commonplace, what do you think would help you have a more normal existence?
Scally wrote [/quote]
Glad you came back: we do get quite a few folk who post once and then disappear, which grieves me, because it means we failed them in some way .... Caring situations like yours (and mine) are very commonplace, what do you think would help you have a more normal existence?[/quote]

No - certainly not failed, and I'm sure that wouldn't be the case for the majority of people who "disappear". I feel I'm trying to do a lot of things and not doing any of them terribly well - keeping up with friends, work, housework (... hollow laughter ...), even finding the help I need, sometimes. So much of what I do is firefighting when things aren't working as they should, not only but mostly with the care agency - mum has a heavy package of care and while that's great, I think it's probably true that the more "help" you get, the more there is to potentially go wrong.

Thanks for asking what might help; I've always found access to a wealth of practical experience is more valuable than any amount of "professional" advice - so I will make the effort to be around more often!!! I thought a lot about what else might help, and could only think of a fantasy scenario. Long story, but 90% of my (dis)tress in the last 6 months has been caused by care agency management who, despite my all my pleas, explaining and, finally, complaints have cost me, literally, thousands in unpaid leave this last year, not to mention loss of credibility at work. No exaggeration to say I feel psychologically scarred by the events of the last year, and I'm no softie.

If I could wave a magic wand, I'd make sure that formal recognition of carers' needs extends to care agencies having a better understanding of the impact of caring, and organizing care, on family members. Where there is a family carer, supporting - or at least not undermining or exploiting them - is also part of looking after the client. I've said a lot about this in another post, so I won't bang on - but I felt close to breakdown before Christmas; better now, but if there's one thing that would make me feel I can't cope any more, it most likely wouldn't be any of mum's doing - it would be the attitude of care agency management ... having said that, the majority of our carers are lovely (and equally fed up).
C_1412 wrote
If I could wave a magic wand, I'd make sure that formal recognition of carers' needs extends to care agencies having a better understanding of the impact of caring, and organizing care, on family members. Where there is a family carer, supporting - or at least not undermining or exploiting them - is also part of looking after the client. I've said a lot about this in another post, so I won't bang on - but I felt close to breakdown before Christmas; better now, but if there's one thing that would make me feel I can't cope any more, it most likely wouldn't be any of mum's doing - it would be the attitude of care agency management ... having said that, the majority of our carers are lovely (and equally fed up).
Absolutely! I've been doing this for just over a year, had to stop one agency, but both cut me out of the picture. I get advice on how to make things better for my caree, but the thought that I need to be involved and to keep sane is not really present. I was talking about respite once, the possibility that my caree could go into a home for a couple of weeks while we do up his room and I get to sleep in in the morning for a bit. The care agency manager said she knew just the place - turns out it was somewhere that organizes lots of trips to London for carees, whereas my caree is bedbound and would certainly never be accepted there, and if he were I would have to organize bariatric ambulances and accompany him, just the opposite of respite. She got carried away describing how he could be taken into another room and engage in all sorts of activities, such as ... 'watching TV' (she realized at that point that he couldn't do anything else, so in fact he'd be worse off than at home). Another thing that annoys me is getting advice from careworkers on how to organize things better, without any thought of course that time is a factor and I need to do my own work - I feel almost guilty if I try to explain why I haven't done things differently or won't be going out shopping the second time in one day because something else they need ran out.