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End of the road...Stuck - Carers UK Forum

End of the road...Stuck

For anyone who is bereaved or no longer providing care.
Well, the worst thing ever has happened. My mum passed away at just 53 a few weeks ago.

Now, as i'm experiencing, i'm on my own with nothing.

I suffered with severe social anxiety and depression for too many years and I cared for mum voluntarily because quite simply at multiple GP surgeries, I was fobbed off and my mental health problems were played down by them.

I had no choice because of them fobbing me off to claim carers allowance but now mum has passed away, the government are putting me in a tight spot.

I'm going through mental health problems, grief, all sorts and have no trust in the NHS. I dont even have a GP anymore because I removed myself from the last GP surgery I was registered at after they told me there is nothing wrong with me.

It's such a mess now. Theres about 4 weeks left of being paid CA and IS, then thats it... on my own with nothing.

The government expect me to look for work and get a job in 4 weeks time? Even though I haven't been mentally well enough for 10 years and now am in bits after losing my mum?

The other option is to go for ESA but as they have never listened to me before, I dont expect them to listen to me now.

It was only 6 years ago a family member passed away who was like a dad to me but the NHS didn't bother to help me at all. I just had to bottle it up and get on with it. Now my mum (My only remaining close family member) has passed and i'm not in a good way at all.

I have been drinking now nearly every day since mum passed and have hit an ultimate rock bottom... but still GP's wont believe or listen to me.

If I dont sort something somehow by the start of April, then I end up homeless as well.
Jason, I'm sorry to hear of the death of your mum. No matter what age we are when we lose a parent, we feel orphaned.

Grief is very, very hard to bear.....

When it's combined with other life problems, and MH, as it is for you, then it is much, much worse.

I can understand why you are turning to alcohol to 'numb the pain', but you also know that too much is only going to make the situation worse for you.

May I suggest that you register with another GP, and try and 'start over' in terms of setting out why life is just so, so difficult for yourself now. It is not unreasonable to be offered some mild tranquillisers, such as diazepam, to help to be a bridge for you over this very, very troubled water of bereavement.

Also, what about contacting your local hospice (and, indeed, via GP's surgery too), to see whether there is bereavement counselling available. I was offered this by our local hospice when my husband died some years ago, and I found it both helpful and comforting. It helped me cope with the dreadful immediacy and pain of grief, giving me ways to 'manage' it, and insights into why it hurt so much, and how, eventually, to 'keep going' in my life.

This is, indeed, a 'crisis time' in your life - but when we are rock bottom there is only one way to go, and that is slowly, slowly, step by step, to try and get back up on our feet.

If nothing else, I'm sure your mum would be hoping and rooting for you - the last thing she would want is for you to be so unhappy with your life. Grieve for her, yes, of course, and a part of you always will (I've still got a photo of my mum on my dressing table), but you also need, for her sakes and yours, to start taking control of your own life now. When the rest of the world won't help, then only you can help yourself. And you can find the strength inside yourself.......not easy, not quick, but the human spirit is very, very resilient. All too often, as you are finding, it has to be .....

Wishing you well, at one of the saddest times in your life. Kind wishes, Jenny
Hi Jason
So sorry to hear about your mum, I lost mine at just 56 so I understand your feelings of loss.
I think you know yourself that alcohol will not help in the long term, that is why you have posted. It is as we all know addictive so if you already falling victim to it, perhaps seek some support from AA. If this is not appropriate in your circumstances then you could try phoning CRUISE who offer bereavement counselling. I am just trying to think of more immediate forms of support while you wait to get your GP sorted out.
Could you try some voluntary work to build up your confidence- something you might enjoy and would get you some experience if you have been at home for some time looking after mum and then being unwell.
My big sister was just 52, so I also understand. You have done well to write down how you are feeling. Now you need to talk to someone and say those things, preferably someone who can help you. Rather than reaching for a bottle pick up the phone to the Samaritans and let it all out.
You really, really do need to register with a GP as this is the entry point to the services that will help you. Try not to tar the whole health service with the same brush. There are many good people in the NHS, even if you have recently had a different experience with a few.
Thanks all for the kind words. Sorry to everyone else who has lost a loved one.

Half the problem with things in my life is due to a direct encounter with the NHS.

Long before alcohol became a coping mechanism I went to GP's and said about my mental health concerns. However was told it's nothing. After several times of this happening, I found out alcohol controls my social anxiety symptoms while in public (Gets rid of the nervousness). So because of the NHS, instead of having the help I needed, I was getting by with using alcohol to self medicate.

Maybe bereavement counselling could be a thing but at the moment there's a lot to go through. It's not the grief talking when I say this but mum likely died because of medical negligence. She was nowhere near at the end stage of parkinsons disease. She suddenly went down with a chest infection and we called an ambulance.

At hospital she was fine to start with. Within a few days they were certain that because of parkinsons and the chest infection, she wouldn't make it. A day later they claimed it had turned into pneumonia. They made mistake number 1 by telling us in mums cubicle when she was fully concious that she is on end of life care. She clearly would have heard them say that. They deprived her of fluids and said its just about making her as comfortable as possible for her final days.

A few days later and mum was making a surprising recovery. The dr said that she will be ok and said they will try her with fluids once again. However when I asked a nurse, the nurse said they have no intention of doing that.

The day after she was back on fluids and doing really well. She was talking, singing and being herself. The dr said they would move her to the local hospice to complete her recovery when she is well enough (As she used to go there once a week and knew all staff).

Yet another mistake by them was to move her to the hospice the following day when she hadn't recovered enough. Within hours she went downhill and a few days later passed away.

I haven't seen her medical records yet but on the hospice notes, the hospital lied to us. They told the hospice when they moved her that she is on end of life care and would only have days left to live.

Her death certificate was a lie too. Cause of death was put down to parkinsons disease. No mention of pneumonia or a chest infection. We all know that people die with parkinsons, not because of it.

I cant do voluntary work because of my criminal record caused by the NHS.

10 years of no NHS help for my health problems meant I hit a lot of rock bottoms. The worst was not long after a GP visit where I was treated like i'm putting it all on and my problems are "mild". I went to the extent of reporting myself for a crime I didn't even do, in the hope that the police would see my cry for help, be on my side and get me the help I need. Unfortunately the plan backfired and I was arrested and put through hell. 2 months later the case was of course dropped because I was innocent but it has left a nasty stain on my record... Arrested for theft with deception and fraud. That will show on CRB checks when applying to do voluntary work so even though I was completely innocent, it's unlikely I will be trusted to do voluntary work.

With mum gone theres just a massive hole. Due to my health problems, the only thing I had to look forward to in life was having time with her. I enjoyed caring for her and having the laughs we had. Now she has gone, it's like theres nothing else.

She said to me numerous times "if anything happened to you, I just wouldn't have a life any more" and in some ways it feels the same.

If I had just been listened to on my first few GP visits around 10 years ago, life wouldn't be like this. All I wanted was to be listened to, get help for my health problems and I would have gone out, got a job while being an unpaid carer for mum.

Now though they allowed things to progress. So i'm at a stage where it could take years to become fit enough to work, yet it feels unlikely that the NHS will agree with me and get me the help I need. Even if they did, there would be the government to battle with in a claim for ESA
Jason, I say this carefully, but I say it all the same.

Let your mum go.

By that I mean this - do not try and take on the NHS about negligence or anything like that. I'll tell you why I say this.

When my husband died of cancer some years ago, he went downhill very, very quickly - he went from being just about 'you wouldn't know he had cancer', to being bedbound and unresponsive within a few weeks. It was VERY rapid.

But - I was furious! I was so, so, SO angry with his oncologist who'd 'abandoned' my husband in his hour of need (he dumped him onto palliative care and just damn well wrote him off!) He wouldn't 'fight' for my husband in the slightes - I was the ONLY ONE WHO FOUGHT for him....

Now, I say all this because in the end.....well, he was dead. It was too late for anything else. So what if I raged and accused and ran endless replays in my head about all the things that had gone wrong, all the bad decisions in those last few weeks (not getting him into a better, cancer hospital, bringing him 'home to die', having the oncologist dump a bloody Do Not Resuccistate on him, etc etc etc.)

It 'ate me up' for weeks and months.

But my poor husband was still dead....

So, you see, nothing can bring your mum back. Things happened as they did. If they happened 'wrong' well, nothing can put it right.

The priority now is YOU. I'm sure your mum would say that too - she would not want your fretting and fuming that her final days were handled badly, that she might not have died had she been treated better, and so on.

So, please - let it go - and focus on yourself.

And when it comes to you, then, again - let the past go. The 'if onlys' can haunt our lives, haunt our present, and taint our future.

You sound like you 'want' help. You sound like you feel you 'should' have got help - that the NHS denied that you had a mental need for treatment. That they ignored you, disagreed with you.

Is the bottom line that you think you are 'iller' than they say you are?

But can you ever get the medics to 'believe' that yes, you are iller than they admit?

And if they did, what would that achieve? Do you feel or hope that if they say to you 'yes, you have serious mental problems, just like you've always claimed' that they will then open the gates and give you all the help you want?

Because I suspect that in these cruel days of endless cuts and costs you won't get any help, or nothing like the amount you want (and that might, of course, be the 'real' reason the NHS deny you are mentally ill!).

Jason, this is such a tough, tough truth - but when there is no one else around to help, then we have to help ourselves. We just have to! Because the alternative is going down through a hole in the ground.....

This a 'deep point' in your life, no doubt about it, but with your mum now beyond your care, but, I would hope 'rooting for you' all the same, it is time to take control of your life. Only you can do this, and you can do it without the NHS providing things like therapy and so on.

Trying to get doctors to 'admit' that yes, you DO have 'serious problems' isn't really going to get you anywhere. It's beating your head against a brick wall. I would say 'self-help' is the way forward for you. You know what you have to do - cut back on the alcohol, do something 'difficult' each day that you don't want to do, get down to the job centre and so on. It's all there - hard, hard, hard - but the strength you will find in yourself, will repay over and over again - your 'healing' will be YOUR achievement.

Think, in this sad and dreadful world, what people are putting up with in so, so many places (even here in the UK - read Eun's posts for example!), and in comparison, you are in a good place.....ironic, I know, to say that, yet it remains brutally true.

What you achieve for yourself will be entirely to YOUR credit.

I wish you well - make life better from now on. Little, by little, by little....
I'm going to add to Jenny's post with a link:

http://www.samaritans.org/how-we-can-he ... maritans-0

I suspect it would help you to talk about all the things that have happened to someone who won't judge but will listen and give you support. The Samaritans will do just that.
Thanks for sharing your experience and i'm sorry to hear that happened to your husband.

I do totally agree with nothing bringing my mum back and understand what you are saying. It is true that what's done is done but let's say it was negligence, it's not just an action of the past but it's an action that will physically damage my future.

I have about 4 weeks now to come up with a plan or I am ending up homeless. When carers allowance and income support stops, so does housing benefit and the council tax discount. I'm then likely to be given notice to move out because I cannot cover the rent and with no remaining close family members and no friends, will have nowhere else to go but the streets.

The thing with the NHS not seeing how ill I am is something I cannot cure through self help. People brand social anxiety as a common problem but for the minority of people like myself, it ruins every aspect of life.

The second I leave the house I am nervous. It's not something where I just think the worst, it's an illness that has been hardwired into me after years of a life with abuse, being bullied and bad experiences. Members of the public are far from understanding and frequently I am seen as a weak and pathetic person. That's not just something in my head, its a fact as I am verbally insulted by people for no reason and when I enter a shop physically shaking, staff follow me round thinking my nervous look is me being up to no good.

The last job interview I tried for was a few years ago and was a failure. They actually stopped the interview half way through and asked me if I had taken illegal drugs because I was jumpy, on edge and had that nervous stare facial expression.

My future sadly is non existent. I have no friends, no family, i'm a nervous wreck and theres not much else I can do.

Had mum's illness taken its course naturally (the PD nurse said a few months before mum died that she has about 3 years until her illness is at the final stage), a lot more would have been put in place.

Just saw the Samaritans link and I have been there and done that countless times over the years. They were far from helpful and their support was nothing short of generic advice and things that I could have just looked at through google searches.

I remember 1 of their emails saying it's obvious I need medical help and to go to another GP in my local area. I did what they said and had no help in the slightest. That GP told me it's only stress and gave me nothing but a sheet of paper with information about a book I could read.
Jason, hi again.

It's taken me a while to post, because yours is such a difficult situation.

Your difficulties (bereavement apart) are twofold:

- MH

(1) MH

One thing that strikes me forcibly from what you write is that you are placing all your hopes on the NHS.

What is it you want from them?

Do you want them to 'ride to the rescue', whisk you off to a hospital for the mentally ill, offer sufficient therapy/counselling sessions to cure you?
Do you want them simply to admit that yes, you are ill, and not just 'making a fuss' or whatever?

You state your condition very vividly and persuasively - in the end, however, two questions arise:

(1) Is your condition a medically recognised mental illness? (eg, in the DSM V or whatever that bible of mental health is that doctors have to consult to decide yes, it's a mental illness, or no, it isn't, it's just a disorder or whatever the next category is.....)

(2) Is it an illness that the NHS treats? (The NHS doesn't treat everything......maybe it should, but it doesn't.....)

The answer to both these questions has to be Yes, or there is absolutely no point, however frustrating, you seeking help from the NHS.

You don't need me, alas, to tell you that the NHS is cash strapped, and vast amounts of what it 'should' be doing is just not happening. And if, grimly, the NHS won't even reach to fund life-saving drugs for cancer patients (because, like well, they're expensive, and anyway, the patients will be dead soon, won't they.....), then I can see why getting treatment for something it regards even as 'minor' (!) is just not going to happen. (Yes, I know, nevertheless, the NHS will merrily fork out for tattoo removal, obesity treatment etc etc etc......)

Also, again, you won't need me to tell you that the NHS is very 'cunning' - it will NOT define a condition as 'being ill' because then, amazingly, it doesn't have to fund it! Hurrah! So if the NHS is saying 'oh, you're not ill, Jason!' then they can turn their backs on you, and justify their inaction.

BUT, whether that's what they're doing (ie, denial) or they just don't have the money anyway so they put off treating you (we know that MH patients have to der 'wait' for a long time to see a counsellor etc etc....all to eke out the money!), IF the brute truth is THE NHS WILL NOT LOOK AFTER YOU....well, then, berating it is really not going to get you anyway.

Not fair, not kind, not what we think the NHS should be doing, but there you go - brute fact.

So, your choices are: Keep trying the NHS (and who knows, maybe a doctor will finally believe you????). OR
Give up on the NHS.

There really isn't any other option, is there?

So - self help, via other MH support forums, via, perhaps, counselling you CAN access because of your bereavement (which MIGHT lead to more help directly for your condition), maybe something like AA, using the drinking, again, as a gateway into help?? Trying to get a grip on your condition yourself, through effort and resolve.....

I'm not saying this is doable, I'm saying, brutally, it may be the only option. If we lived in a society without the NHS then it would have to be all you could do.....

(2) Accommodation/money

I take it you're in private rental? And, as you say, with the threat of eviction looming once the benefits deriving from your role as your mum's carer disappear. What steps can you take to either avoid eviction or get rehoused?

What is the council saying? I'm assuming that as a single male you're going to be way down the priority list....

Can an organisation like Shelter give you any advice or help?

Can you raise any money for another month's rent to keep the landlord at bay, and pay essential expenses like council tax etc?

Did your mum leave you anything at all, by way of money, possessions etc (I'm not, by the way, asking for answers here - it's your business not mine! - simply to try and run through all the possibilities!) that could be sold to tide you over?

Can you get any casual work that you can do (both within the constraints of the CRB issue, and also, of course, your MH limitations)

Can you plan a 'worst case scenario' about what is the 'least worst' thing to do if if if you are indeed made homeless (again, can something like Shelter advise?)


I do realise I'm very probably simply niaively suggesting things that are totally obvious to you, and discounted for good reasons, so apologies for that.

It does, too, seem fiendishly rotten that at the very time when all you will want to do is grieve for you mum, you are being forced to think about your own survival at the most basic level.

Jason, I do wish you as well as possible. I can't comment on your MH, other than it is clearly crippling you and is a great burden to you. I know this may sound 'harsh' but one of the things the 'outside world' hates is people who are 'weird'..........I say this from my heart, as I spent a lot of my youth thinking I was 'weird'....I was 'not as others' (I was ugly, for a start - that's tough for a young woman.....) and I had zero confidence, and hated attention paid to me, and couldn't negotiate the world for tuppance (eg, using buses to get round London, walking into rooms, just talking to people without coming across like a nutjob!)('neurotic female' ....that was me!)......so I do have an inkling of your acute unease when 'out in the world'.

One of the ways I learned to cope was, really, by simply doing the things I hated doing, over and over again, until I was 'de-sensitised' I guess. I sort of felt 'oh, so what if they're looking at me and thinking - God, that's a plain, gawky girl, I don't want her anywhere near me!'....that's their problem, not mine'! I became less afraid of their poor opinion of me. Little by little, things I dreaded because less of an ordeal. yes, there were set backs - I can recall moments of utter mortification and humiliation (I once steeled myself to ask a boy out - and got stared at like I was a medusa! I WAS SO HUMILIATED......)

Like I say, I can't comment on the degree of severity of your social anxiety/MH, however it's categorised. What I can comment on, however, is that 'online' here, it's invisible. You write articulately, you spell and punctuate perfectly, you seem totally 'normal' on here. And my point is - if you can be normal here, and 'no one can see your MH' ....that too can be achieved ' in the outside world'.

Spend time online, yes - because that gives you confidence in negotiating communication 'at a distance' (though also incredibly immediate) - but also, even more importantly, get out of the house. Walk the streets, trying to look normal (wear dark glasses if it helps!)(preferably on a sunny day, but who knows)(women get away with wearing dark glasses because we can say it's because we haven't put our eye make up on yet!), go in and out of shops as if you were looking for something to buy, see how other people behave out and about, and copy them. Go into cafes and order a coffee or whatever is cheapest.

Wear headphones, then you have a cast iron reason not to have to communicate, and if you feel scared just put them back in again!

Go into libraries, museums, try and talk to the person at the desk about something, don't care if it feels weird or awkward. Go to places no one knows you and you can 'try out' social interaction.

This might sound extreme, but is there a dog rescue place anywhere near you? Animals are non-judgemental. They have no word for 'weird'. And if you can progress to taking them for a walk, well, they are incredibly social animals. When I'm taking my bro's dogs for a walk you can find yourself talking to other dog owners - you become part of that instant community.

Again, I'm sorry if I'm just burbling away about stuff that is blazingly obvious to you.

Believe, above all, that life CAN improve. That what you are enduring WILL pass. That you can start to 'bootstrap' yourself, however slow the process.

Make a gratitude list - you can see, you can walk, you're not in pain, you're not in prison, etc etc. Thinking of those worse off really can be a wake-up call.

Don't let the ghosts from the past - the bullies and so on - haunt you still, or you'll be letting them win. The best revenge is a life well lived.

Wishing you well, and here endeth the sermon from Auntie Jenny.......(!!!!!!!!!!!!!)

PS - whatever you do, don't go out in the big world outside if you've been drinking! YOU'LL feel more confident - but you'll have 'weirdo' labelled on you before you can say Two Pints of Stella and a packet of crisps!
Thanks Jenny, I appreciated the time you have taken to write that detailed reply.

What I ideally need from the NHS is short term help to make me able to face the public without being physically nervous the second I leave the home. Severe Social anxiety is the key issue behind this and while it is recognised as a disability, the majority of cases are very mild and are treated by nothing more than telling people they need to change their way of thinking (Aided by CBT of course). The problem, like I and quite a few others experience is when it's severe, GP's only put social anxiety in 1 category and as mild anxiety is common, they could have seen someone earlier that day with mild anxiety. Which means when they see me, they instantly assume it's the same as what it was like with that person earlier.

The key goal overall is to get into work and I am fully wanting that to happen in the future.

What I need to happen for that though is for it to be recognised that nobody is fit to work when they are physically nervous the moment they go outside. Also coping methods like drinking alcohol before leaving the house or going to the closest pub when I leave the house purely to get rid of my nervousness are very unhealthy forms of self medication.

Then instead of alcohol, having something like medication to get rid of the nervousness would indeed help me short term. However it would only help if I was declared unfit to work and given a dr's note to claim ESA. For me ESA would be less about the money and more about a gateway to work since they do "focus groups" and things like that where they help people in receipt of ESA get back into work.

The NHS do treat severe social anxiety in this way, however help from what I have researched is hit and miss depending on factors such as what GP someone sees and what area they live in.

For certain I would need medication because believe it or not, if I had say 4 beers before leaving the home, I appear much better than I do if I had no alcohol. I have gone out in public since having SA, without drinking and each time it was a horrible experience. My nervousness was picked up on by members of the public, in shops and wherever I went. Then its upsetting that my voice goes weak and stutter filled when members of the public try to make small talk, which does make me come across as weird. When drinking to control this nervousness though theres no stuttering and I am able to take part in small talk conversation.

I'm already with the council. It's a housing association property. I asked the council via email and they said when my CA and IS is stopped in April, I have 2 choices:

Either go and get a job


I claim ESA and still get housing benefit

The SA has been an issue for too many years, I know I come across here as normal from my typing but 1 of my only strengths in life is I am a computer expert. I have time to sit, think and nobody knows me in person. Offline and people do judge others over all sorts of things which is often to make themselves feel better.

Members of the public may not even realise what I go through, but if i'm in public and stuttering, physically shaking or have that nervous stare, people make fun or laugh at me. They don't then realise that their actions effectively set my progress back by weeks or put me into a state of depression where I go back home and cry for hours.

I would love a dog i'm unfortunately not allowed 1 here.

I do get some money from mum but in some ways its a mess. I get around £6000 which in theory isn't too bad. However I have to pay for the funeral out of that (nearly £4000), then have immediate debts to clear with the rest