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Hello... this turned into a rant, sorry! - Carers UK Forum

Hello... this turned into a rant, sorry!

For issues specific to caring for someone with mental ill health.
I thought I would join because I am feeling a little isolated, lonely and helpless. I have been caring for my partner for 18 months (I am 20 now, was 18 when I started) and we had only been together about 3 weeks when I was asked by the hospital to look after him when he was discharged and since then it has been presumed that I am ready and willing to look after him. He has mental health problems and it can be quite stressful at times when he is really ill or has to go to hospital and I have no idea what to do! I've had no real support from anyone, I had a carers assesment about 6 months ago but was told that as a full-time student there is no support available for me and that was it. I have noone to call in a crisis or for advice and can't take a job alongside my studies to financially support us both. As the benefit system is so slow for the last 18 months we have been living off just my student loan as he has been told he is too ill to work, which is a pressure in itself! I'm not with him at the moment or for the next week as i just had major surgery and can't do anything for myself let alone him but I'm constantly worried about him without me!

Sorry that was a bit ranty... I havent spoken to anyone about this!
Hi Alex
Caring is hard enough without money worries too, eh?
While it is true that if you are a full-time student you can't claim carers allowance, you shouldn't both have to live off your grant. Your partner should be eligible for benefits in his own right - things like ESA, income support or housing benefit. If you contact Carers UK help line (email is best) they are very good at advising about what to do
Hello Alexander and welcome to the forum :)

I don't think I can of much help to you as(1) I'm the other end of the age scale to you (I'm retired) and (2) my experience is in caring for an elderly parent with dementia.

But two things come to mind -

I'm presuming that your partner has been assessed by your local Mental Health team and is getting support from them; if not then he needs to see his GP about getting them involved.

Secondly it would probably be helpful for you to contact the Carers UK Adviceline (their contact details are on the home page of the main website) with regard to advice on how you can access support and what, if any, benefits you and your partner are entitled to.

Finally I would say this (and it may sound harsh) - that although the hospital presumed you would take on your partner's care you cannot be forced to do so. If you no longer feel that you are able to care for him then you must tell his Doctor (or Social Worker if he has one). You do have a life of your own and you are entitled to live it - you are very young to have been put in such a position without support.
I'm appalled that a hospital would think it OK for someone of your age to care for someone with MH issues. Sadly, they seem more interested in getting their bed back than what hapoens afterwards. You cannot be forced to care, and need to realise that the sooner you disentangle your lives the better. Major surgery takes months , if not years to fully recover, and so this is the perfect time for you to speak up for yourself.
I'm sorry but I'm appalled too. I'm appalled not just at the hospital and social services but, to be blunt, at your 'partner's' family (I'm putting 'partner' in quotes because do you really, really think he is your partner??????)(he's your patient, your ward, your dependent, your 'clinger'....), AND, I'm appalled at YOUR family as well!

What on EARTH is your partner's family thinking of, dumping their son's/relative's care on you! It's outrageous and despicable. And what on earth are YOUR family thinking of either???

Now, maybe I'm being presumptious and, tragically, neither of you has any family at all, or maybe you've been 'thrown out' because you are lovers and they can't cope with that, but unless there is some BLOODY GOOD 'excuse' why you are left to cope with this nightmare, they deserve a thrashing for what they are doing to you.

My son is 20 and a full time student like you - I would be outraged if his girlfriend, or her family, let her 'collapse' all over him as your partner has done. And I would simply 'take you away' from it.....

The situation you are in is utterly untenable, and I hope you find the support here to stop it in its tracks.

All the VERY best to you - please, please, please, withdraw from this situation NOW, and get your life back. Your partner (if you want to call him that) needs professional help, or help from his family. It's disgraceful that you are carrying this appalling burden.

Kind regards (but VERY angry on your behalf!) - Jenny
I know he is eligible for benefits but his care co-ordinator couldn't manage to co-ordinate tying her own shoelaces if left alone to do it! So he has only just had the forms through and with me being away he is really struggling to know what to put. Once I get back in a week or so we will have a go through them :)

I am quite happy to care for him, I would just have liked some support, not being sent home at 4am without transport or a clue what to do in the middle of January!

I will contact the adviceline once I've paid my phonebill up :)

They reckon full recovery will take 2-3 months, and my partner has been really supportive so it should all be well on that front.

My Partner most definately is my partner. He is not acutely ill all the time. The majority of the time we have a highly functioning and communicative relationship, he has just had some horrific things happen that have played havoc with his head. And sometimes he is ill. Sometimes he needs to be reminded that you need to get dressed before you go out. Sometimes he doesn't know who I am. But he knows he is safe. That is what I want for him. And he wants me to be safe too.

Our families have no involvement in our day to day lives really, living several hundred miles away from us and for either side to intervene would not be beneficial!

I do not want to be Taken away from my partner. I made a choice to live independently from my parents, for my own health, and do not wish to return to living there full time for all the cooked meals, living rent free and loads of washing done in the world.

I do not find my situation untenable. And I would be perfectly able to cope if I was given the adequate support to which others in a similar situation are entitled. I don't appreciate having it implied that my age alone makes me unable to cope.

My partner and I are each others family. I love him, and that doesn't go away because he is ill. I am not going to "withdraw", aside from my feelings for my partner it would leave somebody ill and vunerable homeless, without funds or support and I would do that to nobody, least of all someone I love!
Hello Alexander,

Sorry if my comment on your age led you to think that I thought you were too young to handle your situation, that was certainly not my intention :( In fact I admire your determination to be there for your partner.

The truth is that the hospital had no right to discharge him at that time of the night with no support system being in place at home - it's all too easy for them to discharge patients on the 'assumption' that friends and family will pick up the slack

Being a full time student your situation is aggravated by the Carers Allowance rules which mean that you cannot claim the benefit - one of Carers UK Trustees has been in a similar situation and has campaigned for some time for this ruling to be changed.

If telephoning the Carers UK Adviceline is not an option at the moment they can also be contacted by email (advice@carersuk.org). Just email them with the salient points of your situation and they can ring you back to discuss what support is available to you.

And, finally - please don't take Jenny's comments to heart. She's not angry with you, your family or your partner but with the inadequate system that leaves you in this situation with no support.
Alexander - I appreciate I went into overdrive 'maternal' mode, but I stick by what I say. You have taken on a 'burden' whether you see it or not, to be the carer of a person who will 'need' you (which is quite, quite different from 'wanting' you) for the rest of the time you are together.

I am sure that yes, there are couples who 'last' in that situation - there are quite a few of them here on this site - and it would be interesteing and perhaps educatrional for you to here from those here who have been fcoping for years and years and years and years with spouses who are mentally ill, and to get an idea for just how much a strain that is.

I grew up with a mentally ill mother, so I am not being just 'oh, the mentally ill need to be dumped and put in asylums!' but I DO KNOW how much of an incredible strain it is to live with someone who is mentally ill, to have them in your life.

If you were my son I would be fighting tooth and claw to free you from this unequal relationship, and that is that. It's so, so hard as a kind, humane person to accept that not a single one of us is responsible for another human's happiness. Mentally ill people are 'needy' in a way that is very very difficult to avoid a relationship becoming unhealthily 'co-dependent' whereby you either turn into someone's 'doctor' (read Tender is the Night....) or else you respond by finding that you yourself 'feed' off their dependency on you.....(the 'co-dependent' bit)).

To me, the giveaway is in your last sentence that breaking up would leave somebody ill and vulnerable homeless.....

I know you won't agree with me, and it is to your credit as a 'noble' human being that you don't, but life cannot and should not be about unilateral sacrifice. Relationships are about equality. I'm afraid I do stick by saying that UNLESS your partner becomes 'cured' of his mental illness (which can very, very possibly be - life traumas only traumatise if we give them permission to do so....) (I'm not trivialising trauma, but the human spirit can rise about all things - think Holcaust etc etc) then it is not a healthy mature adult relationship. If, however, he is on course to be 'cured', then that is far, far more optimistic, and the future could become emotionally healthy for both of you, which would be wonderful.

I'm sorry to be negative, I've probably spoken out of turn with my 'mum's hat' on ((!)), but there it is. As I say, I hope that his mental health improves to the point where he can become an equal in this relationship (though of coourse, ironically, in a co-dependent relationship sometimes that ends it.....the 'supportive' partner can't actually accept that the 'supported' partner is now a full 'adult'.....) But all of that is for the future, and as you eloquently and powerfully say, for now, this is your life, and all you require is the support from the state that you and he are due, and in which case others here are well placed to guide you through the byzantine bureacracy of the welfare system and the NHS.

All the very best to you - I'll bow out. As I say, I hope that those here who have long term experience of a relationships with mentally ill partners come to give you their perspective. They may be a lot more optimistic than I am!

You sound like a very fine young man - I just hope that your 'humanity' is also bestowed upon yourself, not just your partner. It's hard to be 'kind' to ourselves when we are responding to another's neediness.

Oh dear, I keep wading back in, so I really will bow out and shut up. All the very best for the improved mental health of your partner, and the emergence of a true partnership between you. (Just thought, maybe he supports you too in some way - a partnership where each 'takes it in turns' to be the needy one can actually work very well!!!!! It's just got to be reciprocated, the care, that is the essential aspect of a partnership.))

Kind regards from a clearly 'over-reacting' (!) mum-type!!! Jenny.
I seem to have double posted - apols!
jenny lucas wrote:I seem to have double posted - apols!

sorted Jenny !