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Caring, conversations and 'lightbulb moments' - Carers UK Forum

Caring, conversations and 'lightbulb moments'

Share information, support and advice on all aspects of caring.
Hi everyone,

I hope you don't mind me posting here... shout up if you do and I'll take myself away to another section!

We're doing some work about how important a conversation can be in making you recognise for the first time that you are a carer, and that help or support is available.

Is there a particular conversation you have had (either face-to-face, over the phone or online) where you've had this 'lightbulb moment' - maybe realising that you're not just doing some extra jobs for mum, you've actually become a carer and as a result need some support. Or maybe suddenly finding out for the first time that support is even available - like this forum for instance!

It could be with family, friends, medical professionals, colleagues, strangers... the key thing is that someone said something that helped you take the first step to getting help and support.

If you have I'd be really interested to hear more about it.

We're trying to encourage more people to have these conversations about caring, to help people realise sooner that what they are doing is caring, that it is a really important job and that as a result they are entitled to help, advice and support.

Thanks!

Kate
My life changed when the counsellor I was seeing told me it was "OK to say "No" to your mother. I was brought up to be a good girl, do as I was told, help all the time etc. etc. To refuse to do anything was always being a "bad" girl. Learning how to manage mum's endless stream of wants helped me feel so much better about my caring role.
Excuse me but what "hepl advice and support"? Sod all where I live!

Eun
Hi Eun,

We know there isn't enough support for carers in terms of financial and practical support, and it's something we regularly campaign about. I know your son is also campaigning about the lack of respite for young adults, taking action to improve the rights of carers and people with life-limiting conditions.

Many carers tell us – ‘I wish I knew then what I know now’ and we know that there can be long delays before people realise that they are entitled to benefits like Carer’s Allowance or Attendance Allowance or that they can apply for a break or a grant to adapt their home. For Carers Rights Day we focus on getting carers to find out about what help is currently available and stopping carers missing out on what they’re entitled to.

We want people to seek advice on their situation, through the Carers UK Adviceline or a local support group, and get the information they need to find out what they are entitled to or advice on how to navigate the health and care system. We also want people to know that there are places like this forum where they can talk to people who understand what they are going through and can support them through the ups and downs of caring.

The carer population is changing all the time as new people begin a caring role so it’s important that we keep campaigning so people are informed early about their rights and supported to get whatever help is available.

Even people who have been caring for a long time may find that their situation has changed or the rules have changed and they are now entitled to something they weren't previously.

I don't know how recently you've had advice on your caring situation, but it could be worth contacting the Carers UK Adviceline again if it has been a while. We know that the right advice doesn’t solve everything – sometimes support available simply isn’t good enough and there isn’t enough of it. But encouraging people to take that first step to getting advice and finding out what help is currently available is really important for a lot of people.
I would say there was no lightbulb moment but an extremely gradually increasing slope, I would say Dad was already getting AA for ages when I was working full time and probably not thinking of myself as a carer. I would say if you are not doing the "messy bits" you just tend to think you are helping mum or dad for ages and ages . Those first few times when you have to try saying no to parents can feell almost immoral and you have to get your head around the role reversal
I suppose I got dropped in at the deep end with regards to caring, I knew I was taking on the caring role but I didn't know about my entitlements...those came along in bits and pieces.
My situation was different in that I moved back to the UK from Ireland where I was living, I had to navigate two social welfare and employment systems - not sure if carers uk could have helped with that although Ireland is part of the EU so an advisor who knew EU law (especially as it pertained to Ireland) would have been handy.

In fact it still would be. For instance, I stopped working to claim carers benefit, I can only claim this for two years. After two years I must claim for carers allowance instead, but under Irish welfare rules I will not be awarded carers allowance (even though I have made enough social security contributions) as I will fail the habitual residence test (no such test applies to carers benefit). This residence test is in direct contravention of EU law, and the Irish govt has been asked to rectify this. I can't find any uptodate info. DISCLAIMER: I know you can't personally advise me on this right now, I am merely explaining my circumstance as an example! (I have several more but I won't bore you with them!).

I recognise that my situation is unique, there are probably very few carers who are subject to more than one welfare/employment rights system especially those outside the UK. I assumed that carers UK wouldn't be able to help me so I never rang the advice line.

As an aside, what would be great is if there were some organisation with powers to implement sanctions working on behalf of carers, kind of like CQC, to hold statutory agencies to account. Like my mums social worker who never even mentioned a carers assessment at my mums discharge meeting. Who then did a poor assessment two months later when I found out quite by accident that I could have one, etc, etc.

Apologies if I've gone completely off topic, sometimes this issue of empowering carers engenders derision and a touch of bitterness towards statutory agency staff who do know better.
Hi Kate a few years ago I went to see my GP because I was concerned I was having thyroid trouble (it runs in my family.) I described my symptoms e.g tired a lot, putting on weight, miserable etc The GP arranged a blood test to rule out thyroid problems, but said she thought I had T.A.T.T. I asked her what that was and she said, " tired all the time!" and she said it was because I was due to my caring duties.

She recommended I joined a carer support group or a carers forum etc to get support from other carers. At that time I didn't see myself as a carer but just as S's mum. However I duly researched, found THIS forum and realised I was a carer and that was why looking after as him was harder than being a mum only. It was definitely a light bulb moment and a real revelation that despite us all having different situations, many of our problems are the same.

Melly1
Like Henrietta my wife and I gradually came to the realisation that I was more than her husband; I am her carer as well.

It was only after hitting crisis this summer and my wife having a referral back to social services that when they came in did I find out from the social worker that there was help available to me as well as my wife. We had always thought we wouldn't get anything because of my salary and for many years hadn't bothered seeking help. It turned out that my salary isn't taken into account for the care my needs.

The help available isn't widely 'advertised' and as a result we've spent years struggling hence my slide into work related stress and what appears to be a heart condition (awaiting test results).
For me, the moment when I actually became a carer is very precise. About ten am on a Tuesday morning in September the phone rang and it was my MIL. She and I only ever spoke on the phone on Sunday evenings, so I immediately was concerned - 'What's wrong, Granny?' I asked in consternation. She sounded very distressed and agitated and I thought she must have had a stroke, or other health 'incident'. She simply said 'I can't face another winter up here' (Glasgow), and I immediately (and utterly stupidly!) said 'I'll come up and see you as soon as I can this week and we'll see what we can sort out!'.....and so I became her carer. Just like that, in one simple exchange of conversation.

However, I don't think I realised I'd become her carer for some weeks later - the date I joined this forum - having 'roamed the Internet' wondering what I should do next about trying to find a 'solution' to the 'problem' (a 90 y o woman with no one else in this country who cared whetehr she lived or died)(apart from her 19 y/o student grandson).

Although I know I AM her carer, I don't actually 'believe' it - I still think I'm 'different' from everyone else here as I have no 'intention' of being 'trapped' into 'caring'....I'm still trying desperately to 'get rid of' the problem of the brute fact that my 90 y/o incipiently-dementia'd MIL can't actually live without my 'input' in some way. I'm a 'carer in denial' par excellence!

'I AM NOT YOUR CARER!' I yelll at her in my head, because I I don't WANT to have to 'cope' with her 'helplessness' and 'dependency' on me and her 'emotional fixation/neediness' on me.

That was my 'lightbulb' moment- the moment the lightbulb of my life 'blew' and left me in the darkness in which I now live.....

Jenny (Feeling pretty damn fed up as the Abbeyfield house manager told me y/day on the phone, when I phoned to say I couldn't see her today, but would be over on Monday, that she'd packed her bag and told him she was off, and only stayed because he asked what address she was going to and she couldn't remember my address, so stayed instead....and he thinks she may have drunk the rest of her bottle of (already well watered down!) gin.....on top of various other 'behaviours' on her part, he suspects she's trying to get herself 'expelled'.....I'm going over tomorrow to 'discuss'....)
Kate, slightly less peevishly (!), I think in terms of (other) lightbulb moments, pertinant to your original question, I'd say that in terms of 'support' the following would probably apply to me:

(1) Being of the Internet generation of silver surfers (well, almost!), I've now normalised that when ever I want to find something out in life, I tend to hit the Internet and browse around. So when I got landed with MIL, I thought, OK, so what's 'out there' on the Internet in terms of 'being landed with very old people' (etc), and that for me was how I discovered this organisation - I probably just put 'caring for the elderly' into Google search or something like that.

Joining here was most DEFINITELY a lightbulb moment, becaue it formalised the 'world of carers' and gave an identity to something that was only vague up till then - as others say, and I agree, 'slipping in' to caring - happens over and over again - the post elswhere about the notice in the GP surgery saying 'If you've brougtht a relative here you're probably a carer'....is very apt! .

I know we read in the press about the crisis of the growing elderly population (I know Carers UK has a far wider remit, but it's only elder caring that I myselfhave to be concerned about - thank heavens), but I think until you join a site like this you don't really take on board what a crisis it is! It is both very 'comforting' to know that others are coping with the problems I am, but it's also very scary too - there are no simple solutions, and the only 'real' solution is for us all to grow old healthily, and then die the moment we become 'needy' of care! Well, that isn't happening right now, is it?! So in the meantime, we have a crisis of elder care hitting middle aged people all across the country (and worse, sometimes young people too, as posts here have testified so sadly).

(2) I think my other lightbulb moment also came through the Internet, but via the Property search engines. I was still thinking 'rental flat to put Granny in near me' , mostly looking at 'sheltered accommodation' with wardens etc (though these are nearly ALL require to BUY, rather than rent!) and in desperation was gradually upping the monthly rental to try and widen the possibilities, when up popped a property that turned out to be an Abbeyfield home. I dismissed it initially - it said something like 'indepedent living for the elderly, food provided, £1850 pcm'. But friends said, OMG, that is GOOD - residential homes are usually LOADS more! - and so I 'explored' (in increasing desperation!). And there she is now (just!)

But I do think that had that Abbeyfield place NOT been on a property search engine I would never have considered it - I'd never have known about it in the first place. My 'knowledge' of accommodation for the elderly consisted of eitherWarden style flats/bungalows you had to BUY (huge risk and committemnt and DELAY because would need to sell the flat in Glasgow), and 'Residential Homes' ("Old Folks Homes"). I simply had never heard of Abbeyfield, or of anywhere you could 'rent' (it's a monthly place thank heavens) that was sort of one step below - including pricewise! - the full-on Old Folks Homes in my head.

Anyway - those are my lightbulb moments -

- the "Help me!" phone call that took over my life
- finding Carers UK and realising I was a de facto carer (NOOOOOOOOO!)(still in denial!)
- discovering the existence of a third category of 'elder living' in monthly rental supported living accommodation at Abbeyfield by accident on the property search engines on the Internet.