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desperate - ill and carer without allowance
earthbound_misfit
Posts: 460 Forumite
Hello there. I'm at the end of my tether; no idea how to keep going. I can't write what I'm thinking so please understand.
I was getting ESA SG previously (for mental health) and although I am STILL waiting for treatment I was beginning to feel a bit better/more able to cope. This means I stopped being suicidal daily, had some fun (oh to feel fun again!) and felt more ready to carry on living. As such I started to work on my previously shelved idea of self-employment (working on the idea, developing it, not actual working). I went abroad for a few months to an area I've been to before to get the 'old me' all fired up and ready to go - I thought the trip would be a boost and bridge the gap between being to unwell to work and giving me the push and exhilaration to realise I CAN do stuff and need to make my own money!
When I returned I signed onto JSA temporarily, although rapidly deteriorated and went onto ESA - still trying to get everything together to go self-employed though. Thought it'd be a couple of weeks from now I'd be ready to go...
However I have been caring for/trying to help out a friend (get treatment, sort out housing issues etc.) This friend has a claim for DLA on appeal, also I don't think I care for him 35hrs a week (it's more hit and miss, random times) so no carer's allowance. However caring for him involves lots of phone calls to unwilling and uncaring MH workers, basically he doesn't have any treatment or support other than me, repeated referrals from the Dr get nowhere. I've tried contacting PALS etc and they just say "go back to his GP", however I cannot take him there as I don't drive, and due to my own issues struggle to be ok enough to leave the house at set times, especially as his GP (and his flat) is quit far away/time consuming and expensive on public transport. It's especially hard as I have to stay with him the night before appointments (as he has a tendency to 'wander' off, with no memory of where he's been, also has moment where he thinks he's a child and speaks/acts accordingly) and the appointment makes him so anxious his symptoms get really bad and I exhausted/breaking down myself before we even get there.
As soon as I have a minute to get my head around the self employment thing, I have to deal with him or something stupid relating to benefits. I feel exhausted and don't seem to have enough time in the day to do the basics for myself like shopping, cleaning etc, because I get stressed and confused and lack concentration and memory as a result. This was the whole point of SE - I still cannot cope in a normal workplace/with set times; I have to work around my problems.
I keep thinking I will have to shelve the SE plans, but that will mean passing an Atos sham assessment - and it's on record my last claim ended due to going abroad, so no chance of passing the thing! (Previously I had one appeal and later passed on ESA50 form alone). Also after October when universal credit come in, it's going to be virtually impossible to start SE.
I feel like I MIGHT be able to manage life/SE if not caring for friend, but cannot do that as we are talking a VERY ill individual (symptoms of DID and dissociative disorders in general for those who know). Unfortunately the NHS don't usually recognise this/believe in the diagnosis so think he's making up his symptoms (cos you'd really walk 50 miles til ur feet bled just to pretend to be ill, hmm?) so that's an uphill battle. I myself went through an awful few years at the hands of abusive professionals and still have nightmares and flashbacks of that time so it's making my own issues wore/raking up memories too. Everyday after I help him I end up in bed, exhausted, confused, the 's' word, and unable to cope with basic things.
I am terrified at the welfare changes, hence wanting to get off it asap. I feel I have no future, there is always something stressful or horrible happening (I've been homeless 4 times, for example) that takes all my energy to deal with - I'm really at the end and hope someone can help or advise.
Sorry if it doesn't seem strictly moneysaving, but it is I'm just trying to survive/have enough to live on!
I was getting ESA SG previously (for mental health) and although I am STILL waiting for treatment I was beginning to feel a bit better/more able to cope. This means I stopped being suicidal daily, had some fun (oh to feel fun again!) and felt more ready to carry on living. As such I started to work on my previously shelved idea of self-employment (working on the idea, developing it, not actual working). I went abroad for a few months to an area I've been to before to get the 'old me' all fired up and ready to go - I thought the trip would be a boost and bridge the gap between being to unwell to work and giving me the push and exhilaration to realise I CAN do stuff and need to make my own money!
When I returned I signed onto JSA temporarily, although rapidly deteriorated and went onto ESA - still trying to get everything together to go self-employed though. Thought it'd be a couple of weeks from now I'd be ready to go...
However I have been caring for/trying to help out a friend (get treatment, sort out housing issues etc.) This friend has a claim for DLA on appeal, also I don't think I care for him 35hrs a week (it's more hit and miss, random times) so no carer's allowance. However caring for him involves lots of phone calls to unwilling and uncaring MH workers, basically he doesn't have any treatment or support other than me, repeated referrals from the Dr get nowhere. I've tried contacting PALS etc and they just say "go back to his GP", however I cannot take him there as I don't drive, and due to my own issues struggle to be ok enough to leave the house at set times, especially as his GP (and his flat) is quit far away/time consuming and expensive on public transport. It's especially hard as I have to stay with him the night before appointments (as he has a tendency to 'wander' off, with no memory of where he's been, also has moment where he thinks he's a child and speaks/acts accordingly) and the appointment makes him so anxious his symptoms get really bad and I exhausted/breaking down myself before we even get there.
As soon as I have a minute to get my head around the self employment thing, I have to deal with him or something stupid relating to benefits. I feel exhausted and don't seem to have enough time in the day to do the basics for myself like shopping, cleaning etc, because I get stressed and confused and lack concentration and memory as a result. This was the whole point of SE - I still cannot cope in a normal workplace/with set times; I have to work around my problems.
I keep thinking I will have to shelve the SE plans, but that will mean passing an Atos sham assessment - and it's on record my last claim ended due to going abroad, so no chance of passing the thing! (Previously I had one appeal and later passed on ESA50 form alone). Also after October when universal credit come in, it's going to be virtually impossible to start SE.
I feel like I MIGHT be able to manage life/SE if not caring for friend, but cannot do that as we are talking a VERY ill individual (symptoms of DID and dissociative disorders in general for those who know). Unfortunately the NHS don't usually recognise this/believe in the diagnosis so think he's making up his symptoms (cos you'd really walk 50 miles til ur feet bled just to pretend to be ill, hmm?) so that's an uphill battle. I myself went through an awful few years at the hands of abusive professionals and still have nightmares and flashbacks of that time so it's making my own issues wore/raking up memories too. Everyday after I help him I end up in bed, exhausted, confused, the 's' word, and unable to cope with basic things.
I am terrified at the welfare changes, hence wanting to get off it asap. I feel I have no future, there is always something stressful or horrible happening (I've been homeless 4 times, for example) that takes all my energy to deal with - I'm really at the end and hope someone can help or advise.
Sorry if it doesn't seem strictly moneysaving, but it is I'm just trying to survive/have enough to live on!
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Comments
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As difficult as it will be, you need to put yourself first. Your friend clearly needs help but that is not your responsibility, and if things continue as they are you are going to both end up ill.
Take a step back. It may be that he is coming to rely on you, and you backing off will encourage him to help himself a bit more?
Perhaps you could put together a list of phone numbers that would help him - MIND, the Samaritans, the local crisis team if he is eligible? If he is not, he can present himself at A&E if he feels he is a danger to himself.0 -
We are both ill already. If I don't help him he will end up destitute and dead. Not from suicide, but cannot look after himself when he has 'episodes'. He 'came to' himself wading chest deep in a river once and was brought home by police!jacques_chirac wrote: »As difficult as it will be, you need to put yourself first. Your friend clearly needs help but that is not your responsibility, and if things continue as they are you are going to both end up ill.
Four months away (abroad for me) seemed to help but I've since uncovered/am having to deal with all the problems arising from him not having my support during that time (though we still chatted on Skype sometimes, emailed etc). A lot of it is paperwork - he hides scary forms in a different mind state and can't remember where he put them. I also have to keep hold of his bank cards and things for the same reason.jacques_chirac wrote: »Take a step back. It may be that he is coming to rely on you, and you backing off will encourage him to help himself a bit more?
The problem is, he's not depressed/suicidal (well a bit but only as a result of the difficulties he faces due to the other stuff). So 'someone to talk to' doesn't go any way to addressing the actual practical problems. Also, when he's in an 'episode' he doesn't have the awareness to ask for help/realise something's wrong - he kind of seems hypnotised, walking round doing odd things/hiding possessions wandering for miles to hide things etc. (Occasionally he brings things back too). He's been taken to A&E by the police to be assessed when they've found him wandering. The last time I actually called them in desperation as the 'crisis team' were so useless and basically said I shouldn't bother to care for him and apparently hearing voices and the rest is a 'behaviour'! (erm no, his symptoms have been well documented by trauma specialists).jacques_chirac wrote: »Perhaps you could put together a list of phone numbers that would help him - MIND, the Samaritans, the local crisis team if he is eligible? If he is not, he can present himself at A&E if he feels he is a danger to himself.
In A&E they he waits for an average of 7-8 hours for the crisis team to come and assess him (usually under a 136 police section with cops in attendance) only by the time they do, he's out of the 'episode' (it can usually be halted/shortened by someone interacting gently with him) and then they say there's nothing wrong with him!
The police have made numerous referrals as they have seen him very ill, although they have been really horrible to me on occasion, as have the crisis team, as I'm seen as a trouble-maker (for fighting for treatment for myself, and now him and pointing out I cannot sustain looking after him).
His last A&E attendance the crisis team actually refused to asses him as he had been assessed by them 4 MONTHS previously!! And on that occasion he was actually sectioned, then UNsectioned (presumably illegal) as they couldn't find a bed! No note of this in medical records, or course... but the police have a record as one stayed with him for several hours afterwards as they were so concerned.
It's MP time isn't it?
Wish their was a strength well I could draw on...
Also my own circumstances are very difficult - Atos will never pass me, I cannot cope with going self employed whilst dealing with this... i'm stuck, and terrified.0 -
How did he cope before you started caring for him? I can understand your reluctance to withdraw the help you are providing, but it sounds like his needs are quite complex and even if you didn't need to look after yourself, might not be able to help him as he require.
It's difficult to advise as it sounds like on one hand you can't cope with caring for him full-time, but on the other you don't want to withdraw your support. If you've already done all you can for professionals to give him the support he requires, there isn't much you can do. I would look after him as much as you can, but ultimately, you need to look after yourself and if the only way to do so is to focus on getting your self-employment business going, then that's what you will need to do.0 -
I have to agree with the others, you have to look after yourself first, you can't help anybody if you're out of action yourself.0
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Wheres this mans family? perhaps you can encourage him to seek out them for some support etc. Also like someone said give him the contact details of support services etc.There are loads of self help type places and groups he could access.
If he doesnt want to then thats upto him, but his health is not your problem. Set a firm boundary of say seeing him for an hour once a week or a fortnight and get on with your own things. If he keeps ringing then just tell him to ring Mind or somewhere like that and explain that your not well enough to cope with him as your not great yourself.0 -
so what happened for the 4 months you were abroad? Does he have a family/wife?
If he is a danger to himself perhaps he does need to be sectioned. Maybe you can get a mental health charity involved who will know what to do0 -
He's quite young and hasn't coped really since leaving school. He used to work, but things unravelled. He kept things very hidden for a long time and there was a particular incident that brought stuff into the spotlight. His behaviour had been very odd before that - he was very unreliable for a start due to losing time and not knowing where he'd been etc.How did he cope before you started caring for him? I can understand your reluctance to withdraw the help you are providing, but it sounds like his needs are quite complex and even if you didn't need to look after yourself, might not be able to help him as he requires.0 -
Unfortunately they're useless, and quite clearly do not care. (His symptoms are in line with childhood trauma so not really a surprise there).dandelionclock30 wrote: »Wheres this mans family? perhaps you can encourage him to seek out them for some support etc.
And, like I replied to that person - when he has these 'episodes' he is totally unaware of anything round him, much less that he needs help. All he is aware of is large chunks of time disappearing, finding himself wandering miles from home with bleeding feet, or half naked, important possessions and letters disappearing and reappearing (along with some really weird random stuff!). It's not really self-help group/helpline territory. Neither is sorting out forms, benefits, looking after his important stuff so it doesn't disappear and bringing him 'back' from these episodes/watching over him whilst they are happening.dandelionclock30 wrote: »Also like someone said give him the contact details of support services etc.There are loads of self help type places and groups he could access.
I have stated quite clearly that the mental health services won't help him. I pointed out he'd been taken by police to be assessed and they'd refused to do so. I also mentioned he'd been illegally UNsectioned when they realised there were no beds free. He is TRYING to get help!dandelionclock30 wrote: »If he doesnt want to then thats upto him, but his health is not your problem. Set a firm boundary of say seeing him for an hour once a week or a fortnight and get on with your own things. If he keeps ringing then just tell him to ring Mind or somewhere like that and explain that your not well enough to cope with him as your not great yourself.
Your attitude is incredibly hurtful, I have been very ill mentally myself in the past and had friends abandon me for "not trying to get help"... despite me repeatedly pointing out I was but getting sent way with a flea in my ear every time. How would you feel if it were you who was ill, refused help, and then your friends blamed you for not getting help that wasn't available?
Is it that people can't believe how crap the services are?
Also, he isn't asking me for help, I can just see he needs it. Can't you, from the descriptions I've given? When I was away we had regular contact (every few days) and I did actually have to call a couple of people on his behalf and go over some stuff with him. Also, as I said, there were some things that came to light afterwards that resulted from him not having support at the time (eg. potential eviction for unpaid rent as HB forms hidden, not handed in). He is my closest friend, I don't know how anyone could think it was easier to watch him deteriorate slowly and lose all the wonderful things about him, and just be some 'mental' tramp on the streets. How could you live, doing that to a friend?
And, dear god, "setting a boundary" of an hour a week? For someone who's suffering from childhood trauma, someone who tries their very best to be a loving loyal friend? How cold and callous to talk of "boundaries" unless you can put a boundary on his pain!0 -
In the time it took me to reply, there has been progress. Housing association will provide a floating MH worker (qualified MH nurse). Apparently they can help access treatment, so fingers crossed! Also obviously the housing issues are being helped too... what a load off my mind!0
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earthbound_misfit wrote: »In the time it took me to reply, there has been progress. Housing association will provide a floating MH worker (qualified MH nurse). Apparently they can help access treatment, so fingers crossed! Also obviously the housing issues are being helped too... what a load off my mind!
That is good news.
I was going to suggest that you contact your local MP as it seems that you have tried your hardest to get some support.
It is infuriating that people with mental health issues do not get the help they should. This is not the first time I have heard of one department 'palms it off' to another department.
Well done for persevering. Hopefully now you friend has another person they can contact as well as yourself.0
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