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Being a carer at Uni - Page 2 - Carers UK Forum

Being a carer at Uni

For issues specific to caring for someone with mental ill health.
Thanks for that reply Elaine, it means a lot to me to be taken seriously here. You have given me a lot to think about and look into.

I think really the help we need comes under the emotional and medical. As much as there are practicality issues at times, I think I'm dealing with them. Emotionally I am finding this situation really difficult, I am just very worried and feeling hopeless and alone. I feel unequipped to deal with the intensity of my partners mental health problems, especially as she can be pretty paranoid and delusional, thinking that the people we see at the hospital aren't trying to help and that they're just telling her she's doing everything wrong. She has an assessment with a local charity who provide longer term therapy for young people this month. It was an absolutely mammoth task convincing her to have an assessment, but hopefully she will see them regularly as the people we see at the hospital are meant to be very short term (seeing people for maybe a fortnight) and we have been seeing them for a couple of months. She is also on the waiting list for NHS therapy, but in our area it is a 12-18 month wait! Our social worker is going to try and bring that down for her.

My fear is that my partner will opt out of these things and we will soon be discharged from the hospital team (they never wanted to go there in the first place, I have to drag them out every time), then I will be properly alone in this again. They are not on any medication, they were taking some for Depression and for ME but stopped because of lack of belief in it and financial reasons. I would be happy to pay for their medication but they're not happy with that, I'm working on getting them to fill out a form to try and get free prescriptions. I have no real control over what my partner chooses to do, and I am concerned that they're going to continue running away from all these options leaving me in a difficult situation. I tried the 'tough love' approach in sort of saying "you owe me this much, you have to try this, we can't let things go back to where they were etc etc" but when I start telling them what to do it increases their feelings of isolation and just puts me further away.

Me and my friends do rent a house between us and it's a very supportive group, though most students live in houses with their friends and we didn't really do that on purpose, I guess shared struggles just brought us together. We do largely have some kind of life outside the group (though I'll admit mine is diminishing, as is my partner's), you can sometimes notice evidence of 'cabin fever' when we've all been spending too much time together.

I will investigate more with Uni and the students union.

My partner is hiding from parents more because they don't really see eye to eye and naturally PTSD comes from stuff that is very hard to talk about. I think it also has to do with the paranoia to be honest, but they grew up in a pretty 'highly strung' environment and I think family would probably just add to the stress of this situation (for now). Probably also worth noting the family do know about the ME but don't take it seriously, sort of a "I can't see it so it's not real" attitude. :/

Thanks for your input I really appreciate it, if anyone has any suggestions on how to reduce my partners fears in getting help they would be gladly received.
I agree entirely with Jenny. I'd be devastated if my son (now 39) had ever had a problem like this and not told me. Sometimes, we have to make hugely difficult and brave decisions in life, and do the right thing, even if there may be some consequences. You need to make one now. To tell your own parents, and to tell your partner's parents too. After all, the anguish you are going through at the moment is only worth going through at all if you are planning a long term relationship. If that is the case, then you are going to start in an awful position if you don't trust them enough to share something like this with them. They might hold it against you forever, and the mental health problems are never going to go away on their own without proper help and support from trained people. There is only so much an untrained person can give. This applies whatever age a carer is, and whatever the nature of their carees problem.
jenny lucas wrote:What do your parents say about this? Do they know you are struggling with all of this?
My parents know that I have a lot of responsibilities and issues at the moment (and can probably work out some of it), but I've left out exact details in respect of my partners privacy (imagine going round to your boyfriend's parents house for dinner if they know all that about you).
jenny lucas wrote:You say you and your housemates are 'a team' - but what are they doing FOR YOU? Is it YOU doing all the 'looking after', and them doing all the 'accepting your help'??
I don't really get why this is so hard to understand, young people can have very sincere friendships and look out for each other, who else do we have? I have physical and mental health problems, not to the same extent as my partner, though my housemates support me a lot through particularly difficult times with that.
jenny lucas wrote:To be honest, your partner (and personally I would challenge that description, because they aren't really a 'partner' - ie, shoulder to shoulder - at all, are they, they are a 'patient' with you as 'carer'.....) doesn't sound like they (she/he?) can cope with university life at all.

I'm actually a little offended that you don't think they can be my partner? Lots of people on this forum seem to be carers of partners?
jenny lucas wrote:If they really have tried to kill themselves twice, they need serious, serious help, medication, psychotherapy and possibly even hospitalisation and sectioning.
Yeah it was more than that really, and you'd think so but every time we went to the hospital and said they weren't stopping at anything to hurt themself we got sent home and I was told to stay with them. It is apparently very hard to hospitalise suicidal people.

We are both struggling academically, I am floating along but it's a bit more serious for my partner and I think they may struggle to pass this year (they do a high intensity subject which doesn't help). We are trying our best and are smart enough to do well, just have to do what we can.

I know you're trying to help, but parents can't fix everything. My parents are a part of my support network much like many other friends and family, they are far away and they cannot really do anything in this situation except give me a hug and tell me I'm doing good (which they do do).

I'm a little late to the party, but have lots of experience with the mental health system. The way the system works is they will basically leave you to take the full burden of care all the time you are willing to. As a caring person, it goes totally against the grain to say "I can't do this", but in reality, the health service will not help you all the time you are "coping". If your partner is suicidal again, take her to hospital and refuse to take her home point blank. I know it will be hard because your natural instinct is to protect her and keep her safe, and leaving her in the hands of the hospital will feel far from that, and also leaving her alone will feel like you are abandoning her. Unfortunately though, it is the only way to get help. It took me walking away from my 16 year old son and refusing to care for him, to have him sectioned, properly medicated and to start receiving proper psychological therapies. The whole process took 48 long hours, and it absolutely killed me to know he was at the hospital alone, but it was the only way.

It has taken me a while to come to terms with the fact that what I did was "right" - how can walking away from someone you love ever be right? It is sad, but it is the only way. I have spoken to many other carers who have had similar experiences. You feel that you need to give everything to your loved one to make them better, even to the point where you give up all of your life and damage your own mental health, and that if you don't do it, you will somehow been seen by the system, your peers, your partner, and worst of all, yourself, as not loving or caring for them enough, or not being a strong enough person to deal with the situation.

To share a little of me and my own experience, I have a degree and PhD in Biochem, I am a rational, logical and intelligent person, but also have a huge amount of compassion and an innate need to help other people (I am one of those insufferable volunteery-type people, always helping with charity work/PTA/Scouting). I taught at a secondary school, have a wealth of experience at the tougher end of life (drug abuse, co-joined family, domestic abuse, unemployment etc) and really believed in my own ability to navigate through the complex world of mental health issues when my son started to show signs of depression and psychosis 2 years ago. For an intelligent and articulate person, how hard could it really be? The reality of the situation was that all the time I was strong and willing to sacrifice parts of me, the system did not want to help. I gave up my job so I could be there for my son, have battled with mental health teams, and even given up a little of my sanity (to the point where I now have to take anti-depressants and beta-blockers to function). I beat myself up over not being able to access help and not being able to cope with my work load and caring for someone who was suicidal.

In hindsight, although morally and from the heart I was doing the right thing, in reality it just prolonged the agony. My overbearing need to keep my son safe took all the responsibility away from him and from the mental health service and put an excessive burden on me - one that not even a mother should have to carry. By stepping away during his last serious episode and actually having the strength to say "I cannot deal with this - it is beyond what I can fix", he finally got attention and specialised help that he needed.

Looking after someone with a mental health issue is a marathon and a labour of love. In order to keep up, you have to have the strength to make some hard decisions, not lose focus on looking after yourself (as we are utterly useless if we fall by the wayside), and a positive mental attitude. If you hold on to hope, your partner will see that there can be a future. If you look for the good and positive in a situation, she will eventually see it too. You also need to see the condition for what it is - an illness that needs specialist care. No one, not even yourself, would expect you to be able to deal with a physical health condition that threatened her life, all on your own. Asking for help, saying how it really is, is not a sign of weakness - it is the ultimate show of strength.

The old adage "a problem shared is a problem halved" is still very true. Talking openly and honestly about mental health with anyone and everyone not only reduces your stress and burden, but will also help to slice through the misconceptions and judgement associated with it. By keeping it to ourselves, we are helping to perpetuate the stigma of mental health. You may also be surprised by people's reactions - more people have experience of mental health issues than you realise, especially in older generations, but they do not talk about it because of the generational stigma. Do not think of sharing your emotional load as an infringement of privacy, more as an educational discussion.

Think I have rambled on quite enough for now. Hope you can see the kindness and empathy in this post. You are doing a stellar job - but don't forget you in the chaotic world of MH caring. x
Robin - I'm afraid I was totally gobsmacked by your reference to going round to your boyfriend's parents house for dinner and them knowing you were suicidal! THIS IS NOT A DINNER PARTY!

Robin, this is your LIFE, and it's your girlfriend's life (sorry if I've got the gender wrong, alter the pronoun as appropriate!).

She's in desperate straits, and is dragging you down with her. Stephanie is right - please listen to her - she's been at the very, very worst end of MH, and she knows what it does to you and to all in contact with you, and she knows how the system works (utterly imperfect obviously, but there you go - better than some countries offer).

You simply can't go on like this. You are being a 'band-aid' to your partner.

You say her parents are unsupportive, and even the cause of her problems - all the PTSD aspects etc. Can you get in touch with the NSPCC who are, obviously, experts in childhood trauma, and get their take on how best she can get the help and counselling and healing that she needs.

Look, I know you're going to reject what I say, but I'm saying it anyway (With my 'mum' hat on!) - when people have MH they are not only incredibly needy, they home in on someone, anyone at all, whom they can hang on to! They are like drowning people who will drown the person swimming out to them......

If you can't bring yourself to tell your parents the full extent of your girlfriend's problems - ie, that she's suicidal - then just post them the link to this thread of yours here, and let them read it for themselves. Alternatively, is there another relative (aunt, uncle, cousin) or family friend (even your home GP maybe??) that you can tell, and then they can channel it back to your parents.

I know you're offended and upset by me calling your partner not a partner at all, and if she is giving ANYTHING back to you by way of support, then I can see your point. But people here who are caring for partners have, actually, had a life with them FIRST before they became carers! The caring is an 'aberration' in their relationship, part of the EVENTUAL 'in sicknesss and in health' of a long-term relationship. In your case, you have been NOTHING BUT HER CARER from the off! That is why, to me, this is NOT a 'real relationship' between two partners, it's a patient/carer relationship (I could describe it more harshly, but that would really upset you!).

I repeat, if you are 100% giving, and she is 100% taking all the time, then you haven't got a partner. You have a patient.

I'm glad you've tried the tough love strategy (I like to call it 'firm love' as it's less harsh sounding!), but what it's taught you is this - that your girlfriend will do anything at all, say anything at all, to keep the dynamics of the situation the way they are - ie, with her needing you to collapse on, and you looking after her (and therefore enabling her to go on being the way she is.)

MH is incredibly complex - as a young person with intense emotions, you won't need me to tell you the byzantine psychology of those with enmotional problems, and one interpretation of what is going on in the complex and painful dynamics of your relationship with her is that she may be transferring all her blame of her parents on to you - that she is punishing you for what she feels her parents did to her, or, that she is turning you into the parent she feels she never had, ie, the kind, supportive, caring, endlessly patient and reassuring one, etcetc etc.

And that is quite without any 'backwash' of emotional dynamics coming from you in return - eg, did you subconsciously choose a partner with MH because you felt you didn't 'deserve' anyone better, that you can both climb on the lifeboat together, that you have a need to look after others for your own childhood reasons, or that you once failed someone else, or even maybe that you've been 'trained' by a needy parent to constantly look after other people....

I'm not saying that ANY of those factors may be in play here, but that they, or a host of other emotional dynamics, some healthy, some not, may be swirling around in this dangerous, painful mix.

Right now, your girlfriend is totally controlling the situation - that has to change. For your sake. For her sake. For the sake of any future relationship/partnership that may await you.

Wishing you - and your girlfriend - well, Jenny
Robin, I'm sorry - I know I must have sounded off in the post above. I admit I've gone into 'Storming Mum' mode, and just want to rush up there and get you out of that situation, and get your girlfriend into a warm, supportive, nurturing mental hospital so she can heal her mind without the appalling toll she's taking on herself, and you....
Haha, lots of wanna-be Mums on this forum!
Well, we have all put in our tuppenyworth, I guess! My first wife also suffered from, and still suffers from, mental health issues, not as serious as these though. I was madly in love with her, but sadly after a few years of marriage we drifted apart: I couldn't handle the long silences any more, and she was probably fed up with my increasing need for a better social life.

We had no kids, so parted on amicable terms: both remarried within a couple of years and that worked out well for us. She has a much older husband, kinder and more sympathetic, and two grown up kids. It hasn't been easy for her, she had a long period of chronic, debilitating withdrawal and M.E. But I think it was all for the better.
Hi again Robin
Bet you didn't expect quite so much empathy and advice, not to mention 'mothering'!
Years ago, before my hip op, I used to go Crown Green Bowling. I enjoyed it but I was never very good and I was as likely to be beaten hollow by an eight year old as an 88 year old. Caring is like that. Whatever the age, whatever the experience, whatever the problem we are all Carers like you.( I would however have taken great notice of any hints and tips the 88 year old saw fit to give me.)
What I'm trying to say is the people who have replied to you are not busy bodies, they are not know it alls, they are just caring, concerned individuals who have reached out to you as you have reached out to them.
Listen to them. Especially listen to the hard advice you don't want to hear.
Particularly listen to those who have been there, bought the biscuits, the T shirt and the season ticket, like Stephanie has.
Read through the posts, read through again and do something like make some bullet points.
Things I will certainly do.
Things I'm not sure about but will consider.
Things I won't do.
Then go back to list three and look again and again. List three is probably the one you need to do most.
One thing that stood out for me is the certainty that you cannot do this alone. The reason being is that you are probably not doing your partner any favours because you are enabling her to be reliant on someone who, when it comes down to it, cannot possibly provide the professional help she MUST HAVE in order to get better.
Hard choices, Robin, very hard. Sometimes what we want and what we need are opposites. A lot of us have learnt that lesson the hard way.
Keep in touch.
Hello Everyone, I've been really busy doing work but thanks again for all the time you've taken out to try and help me here! :)

Firstly I feel like I haven't made the background to this situation completely clear and so I'm going to go on a rant to hopefully make my relationship with my partner and how this situation arose more understandable. So.... In September 2014 me and my Partner (who I'm going to start calling 'S' to make life easier) begun University and moved into a flat together as strangers. Prior to meeting we had both had issues with depression, anxiety and psychosis, but we were both relatively stable at this point. We bonded really quickly as it soon became obvious we are full of many of the same opinions and passions, we got along really well and she was the first person I opened up to about personal issues etc at uni. It wasn't long before I became romantically interested in S (and actually the same vice versa, though I was completely unaware of this), though I was kind of just ignoring the feelings with the hope they'd go away because we lived together and that can end badly. In October 2014 S experienced an extremely traumatic event (PTSD related trauma is not childhood), like worse than the really bad shit you see in films, really really uncool stuff. I wasn't aware of this til quite a while later but I did notice that she became increasingly withdrawn, depressed, physically unwell, anxious and psychotic over the next 6 month period or so. Despite having grown up with mental health issues in immediate family and myself, I (like other friends) was very worried. Eventually she did tell me about what had happened, which broke my heart and put me off confessing my feelings even more in fear of scaring her off and not being a good friend. After this, even more bad shit happened to S which just sucks, she was showing symptoms of ME and struggling a lot, but she was still one of my best friends. She was still the person I came home to to talk about the stuff that had happened in the day, still who I'd go out for a cigarette with at 4 am when neither of us could sleep, still who I socialised with and had fun with, and still who I turned to when I was in a point of crisis. We got closer and closer until I decided it was really weird that I had a thing for her and was keeping it secret, so I told her around April 2015, turns out she felt the same so it ended nicely and was definitely worthy of an indie romcom in the process.

The relationship has been unusual and difficult for many reasons, partially as we both have a lot of issues, especially around sex (which reminds me of the argument that I would never call someone who I have a good, healthy sex life with a 'patient'), but it's going really well and I think she's great. Just after the double a&e visit my best friend in the house had to go back to his family and I felt very alone and scared, naturally. This ended up with me breaking down in tears on S about how fucked the whole situation was. This relationship is in no way 100 % give or 100 % take, it's just that S requires a hell of a lot of support right now. I love her and could write you a list of a thousand reasons why I enjoy being around her, but I've already gone on about this for way too long. Yes this is a hard situation and I know I'm probably 'blinded by love' or whatever, but in the short time we've known each other we've been through a lot.

Ok so well done if you made it through that ridiculously long story.

Stephanie, first off I appreciate the biochem PhD, very close to my subject :) Thanks a lot for your post, it's clear you have a lot of relevant experience. I will try my best to be more forceful with NHS services next time (feels bad to admit but there will probably be one) we have a crisis point. I thought about this a lot and as much as I felt like I was being forceful last time, I certainly didn't try leaving S there and I could have done more.

I have been thinking about potentially getting in touch with the MH team at the hospital independently of S (normally I only communicate with them in her presence) to discuss the effect this is having on me, what I can do better and what sort of help I will have when we no longer see them. Though I am sort of putting it off because it almost feels I'd be going behind her back (obviously that's a rubbish excuse, I should probably just do it). As well of this I've thought about talking more to S about how this situation is affecting me, but I don't want to blame her or make her feel guilty/like a burden, she has a strong tendency to try and isolate herself and there is a lot of risk associated with trying to have a sensible conversation with her about this. So I'm not really sure whether that's the right thing to do.

Elaine, I made the bullet point will/might/won't thing, using ideas of my own and from this thread. The 'will' list is actually longer than the other two put together which is a bit of a confidence boost as there's a lot of room for things to help. I will keep looking at this list, moving and adding things where appropriate.

Thanks again for all the time you have put aside for me, I do really appreciate it.
Hi Robin

Good to know there are other scientists loitering on here ;)

I think your plan to approach the mental health service and say you are struggling as a carer is a very good one. The Triangle of Care guidance material may help you phrase your concerns in a way that they cannot ignore, as it is now part of MH Best Practice, and most MH teams now have someone on their team who is responsible for making sure carers are included and supported. Maybe a good starting point would be to ask if someone could sit down with you and write a crisis plan that covers all the bases? If you want an example, I'm happy to email our family one to you (though you would have to bare in mind ours was made to be accessible to our 10 year old too).

As for talking to S, I understand your concerns totally, and I have been there too, worrying over whether to say to my son "look, I'm struggling too" . For a very long time I just struggled on without sharing it, but then it started to have a really detrimental effect on me. I talked to another carer and my son's CPN, and they both made me realise that actually, by talking and being open, we are teaching our carees that it is OK to feel bad sometimes, that we are far from perfect humans, and we trust and value them enough to not have to wrap them up in cotton wool and take away their responsibility for dealing with their own feelings. By failing to disclose our feelings and struggles to them, we are reinforcing their own negative view of themselves. If approached correctly, talking about your feelings can help them reconnect with their feelings and the world, lets them see we are not judgemental of their pain, and that they are still good people who can contribute to healthy relationships. It is always going to be better to sit down and have "the chat" whilst you are still feeling strong enough and in control enough to direct and reassure; if you wait, it may come out in anger, represented in an aggressive way, which is much more likely to make S, and you, feel bad.

Don't hesitate to get in touch if there is anything else I can do.

Steph x