Complicated Situation: Need Advice looking out for a friend

New to Carers Connect
1

Hello,

I am hoping this is the right place to get some specific help, as I find myself in quite a complicated situation regarding the care and serving the best interests of another.

My name is ‘P’ for now, as I am a bit reticent to give away any personal or identifying information in case somehow it reveals any details about whom I am talking about.

I’ve been living with 2 flatmates in private accommodation, one of which for 6 months that I now consider a friend, and I care very deeply for their well-being and happiness.

The person in question has been taken to hospital and sectioned after the last Crisis Team visit ended up in them deciding to call the paramedics and an ambulance, I previously attended their first admittance to hospital about a month ago, also via ambulance. I have seen how my flatmate has been from first admittance, discharge, the ups and downs, and the return to crisis and second admittance to another hospital very recently. I have also been the only contact they have had with both the local authority crisis services and the hospital due to no-one else being specified by them or available.

We suspect my flatmate has been diagnosed with Paranoid Schizophrenia, with delusions both visual and aural. They are currently in hospital under section as we speak, and I am worried. They are in a top hospital with the best staff and facilities available but I don’t know what I can do to help as there are several issues which I have written a letter about which has supposedly been placed on my flatmates medical file after I had a quick word with the ward nurse in charge of the ward they are on.

  1. My flatmates next of kin (single parent), is based in another country, does not speak English, and I do not have any contact details for them. I believe the consulate is trying to contact the hospital to get them in touch with each other, but due to my flatmates symptoms, they do not trust me, hospital staff, or their own parent and have refused to have any contact noted on their medical record. I am the only contact as I was asked for by both crisis services and the hospital senior nurse and I want to help them if I can.

I am not a carer, nor a family member or partner, my role has mainly been liaising directly with Crisis Services, and paramedics since they had been unresponsive and uncommunicative with anyone, just their flatmate and (at least in my mind), a friend, who has been trying to make sure they are safe and have some kind of social interaction however minimal \ suitable. I am convinced I am the only friend they have right now that knows their condition and how they has been for the past month especially, and even knows where they are and visits them. The only other people they have contact with are nurses, doctors, special nurses, and hopefully by now their neurologists.


2) I don’t know what to do about arranging benefits (housing benefit) for them to cover their rent for as long as possible until it is determined how long they will have to stay in hospital or other specialist facility for, my flatmate and I along with another person rent from a private landlord, my flatmate I am guessing has at least a months worth of rent arrears ongoing on a weekly or bi-weekly basis. Again, due to the presenting symptoms, my flatmate doesn’t trust me, and eyes me with suspicion along with everyone else, they are not in a state where I can find forms for them and simply present them to them to complete, they are constantly in a state of confusion and paranoia, practical concerns back in the ‘real world’ don’t seem a primary concern right now (perhaps unavoidably), but someone needs to worry about these things for them and I am not sure how to do it, or who is responsible at the hospital for ‘non-medical’ concerns. I have no power of attorney or rights, I am just a flatmate and friend. I can barely afford to cover my own rent, if I could, I would just pay theirs for however long it takes, but that is not an option at the moment.

  1. The same goes for dealing with their employment, they have had a job for over a year now (not sure how long, possibly longer), they are not in contact with their work, but I have been, they are likely to be given a job back when they are better and are capable of taking up work if and when they are discharged from hospital. Is it up to the hospital to let their work know what is going on? Is it me? Do I have any right to?

  2. I am scared I am going to lose them to the ‘system’, and that at some point I won’t be informed if they are moved and won’t know where they are or be able to get in contact them so I can visit them and they will be dealing with everything alone, both during treatment and whatever happens after, and I may completely lose touch with them since I cannot contact them directly beyond visits to the hospital. They have cut themselves off from their other friends, their family, everyone, I am only involved because I’ve been ‘managing’ this situation for the past month, and have been trying to keep them safe, liaising with Crisis Services and medical professionals (that, and I care about them). I am not privy to the official medical details since I am not next of kin, family, or their partner, however I know the broad details of what may have caused the crisis both in the personal details my flatmate had told me over the months and recently, including personal events and medical issues told in confidence. In fact, it was only my suggestion that the Crisis Team cross-reference my flatmates behaviour with pre-existing medical conditions, it seemed it wasn’t even on their case notes and no-one had bothered considering one could possibly be related to the other. I am worried that my flatmate needs some kind of person to fight their corner beyond the medical decisions, and have someone that knows them personally.

My flatmate needs an advocate to worry about the things they cannot deal with right now, they have no other contact on record, no other friends they can or will reach out to due to existing symptoms, no-one to fight for them. Ultimately, no-matter what happens, they will need a friend, whether they like it or not right now, someone to support them and be there for them, even just to be there and sit in companionable silence if that is all that can be handled right now, and to assist them with things once they hopefully become better or at least manage their symptoms and have to (likely) start their life anew, until such a time as I am not necessary and they can pick and choose their friends and the people that care about them of their own free will beyond the confusion and paranoia.

So… apologies for the long introductory post, thoughts about my flatmate and what they are going through have been on my mind for well over a month now when their life seemed to start crashing down around them, and the stress and upset is starting to get to me, their pain is my pain. I’ve been doing all I can to research on various conditions, how to talk to them without upsetting them, and what to do about practical financial concerns etc, but I need your help, do I have any right to get \ be involved? Is there anything I can do for them even if they cannot deal with thinking clearly more than 5 seconds at a time and without their consent? Is there someone from the hospital \ government \ charitable NGO that can be an advocate for them if I am legally not allowed to? I am not convinced the hospital is inclined to or equipped to worry about non medical concerns. While my flatmate getting better is of course the highest priority, I need to worry about their life and future, since it appears they have no-one else to do so while they are unable to.

Maybe I am overstepping my remit, and should just let the situation take it’s course, things could get better, get managed, or they could be under some kind of hospital \ specialist facility care for months, or even years, we don’t know yet, but I would like to be at their side to support them, so they know they are not on their own, and they have someone to fight by them who won’t leave and won’t give up until such a time as they can make the decision as to whether I am needed or not. I am convinced that no-matter what happens, they will need a friend regardless of what the future holds.


Thank You for taking the time to read,

‘P’

2

Hi P
What a good friend you are :slight_smile:
Most of what you ask can be answered here

“Nearest Relative” is a legal term in the Mental Health Act and can be different to “next of kin”

After you’ve worked your way through that section, look at all the links on the left which explain more what you can and can’t do.

Then google “mental health advocate” (if you haven’t read it through links from the above)

Sorry but that’s all I can do tonight, must get to sleep

Kr
MrsA

3

Thank You for that, and for taking the time to read, and for your kind words, I really appreciate it I’ll give it a read, I imagine my ‘role’ would be at the very bottom.

I’m hoping it doesn’t come to that, and that the consulate can get my friend in contact with their parent and \ or other relatives, although being English (having been born and raised here and having at least a passing familiarity of how this country works) I will have a better idea of what can be done to help, and I am the foremost ‘expert’ on this person’s recent history beyond strict medical matters, I’m not sure what I could do to advise relatives without speaking the language and without an interpreter, should I be able to make contact with them.

I’m most worried about losing contact with my friend and not being able to be there for them, if the hospital will refuse to get in contact if they are moved to a specialist unit or other hospital / care centre. No-one has any direct way of contacting them due to their symptoms and distrust of their phone and other people.

I’ve taken a read through the links, it seems I don’t qualify at all on the NR list having not lived with my flatmate for at least 5 years, although it is entirely possible a county court may choose an NR in the absence of another one (my flatmate has no relatives in this country which precludes them from being an NR, as they themselves reside in the UK). The problem really is there are some very obvious capacity issues with my flatmate, I am hoping at worst they can be assigned an IMCA (Independent Mental Capacity Advocate) to help them make decisions and choices, or the route of CoP (Court of Protection Court Appointed Deputy) may be a possibility.

Ultimately, I do not want to be making decisions for my flatmate, but some decisions need to be considered \ made in the meantime until such a time as they have capacity, I can only have hope that this situation is only temporary, and that I can preserve their life ‘in the outside world’ such as it was ready and waiting for them, without them having to go into a specialist care home temporarily and having the ‘real world’ pulled out from under them due to their detainment for treatment. It is equally as likely that none of the things I worry about for them on their behalf will matter as treatment may be an arduous and long-term project, and their lives may change irrevocably due to the time it takes or the course their personality and needs will change over the coming weeks and months.

I just feel that I must do everything I can for them at this critical juncture, seeing them suffer for so long, confused, paranoid, and not knowing what is going on or seeing a future, I feel it’s my duty to try and preserve their lifestyle on the ‘outside’ to the best of my ability until such a time as they can forge their own way in life again, and to be available for them when they do when they have the capacity to take or leave it.

Thank You for your advice, and your time and thoughts, again, I really appreciate all the pointers and advice I can get.


‘P’

4

May I just raise a separate issue, which I think you urgently need to check out.

Have you signed a lease for the privately rented flat? If so, please read it carefully again, as you MAY find - as it is standard in most tenancy leases! - that the tenants are ‘jointly and severally liable’ for the WHOLE rent.

Thus, if one of the tenants is currently in hospital, and is not able to pay their share of the rent, that the remaining tenants become legally liable!

You can check this with the landlord or their agent (though they are likely, of course, to tell you that you ARE legally liable - all they’ll want is the full rent paid!), but better still with Citizens Advice or Shelter.

Please be careful about this, however sympathetic and supportive you are of your friend and flatmate. You do not want yourself either having to pay his share yourself/ves, or, worse, getting a bad credit score for non-payment of rent, making it harder for you ever to take out another tenancy.

5

Just a thought, but is there any chance your friend would actually be better off ‘going home’ to live with his parent abroad???

I say this because, sigh, however wealthy the UK is, the prospects for mental health patients in this country is NOT good (as you are discovering alas).

It probably depends where they originally come from - some countries, even if poorer than the UK, are far more ‘protective’ of those with illnesses of any kind.

Mental illness is a very ‘cruel’ illness when there are no supportive family or friends to ‘carry’ the patients.

As Mrs A says, he is VERY fortunate to have you rooting for him and looking out for him. But do be aware that this may well be a recurring and intractable illness that haunts him all his life…the ‘fall out’ from looking after someone with mental illness is VERY high. (I was raised by a mentally ill mum, and the ‘fall out’ was substantial until she finally died.)

Be prepared that there MAY come a time when you have to ‘walk away’ from your friend, sad though that may be, as it just gets too, too much for you. Hopefully that won’t happen, but don’t neglect your own life and well being either.

Some illnesses are just not ‘curable’ however much we long for them to be.

6

Thank You for bringing this up, and I appreciate the advice, this won’t be a problem, we do not have a joint tenancy and most of it is ad-hoc, we do have a sympathetic landlord however they will want to get someone in as soon as possible. Finding a means to cover my housemates’ rent will just apply to them only and doesn’t affect the remaining people.

I am however getting concerned that the hospital will move them without letting me know, I’m due to visit them again next week (to give them time and space without having to deal with visitors, it will be their first week alone in the hospital, but I am thinking I need to visit once every couple of days at least to ensure I’m kept in the loop somehow.

7

I’m glad the tenancy and rent issue won’t be a problem at any rate.

Good luck with the rest of it. All I would say is that, though you are clearly a very good kind and highly supportive friend, DO, sadly, be aware that sometimes those with substantial mental health problems just CANNOT be helped to live any kind of permanently independent life.

Sometimes carers simply have to make the difficult decision if not entirely to walk away, then to set clear boundaries and limits as to how much support they give.

In the end, it can become a dreadful ‘burden’ on the carer, who has to effectively ‘give up their own life’ in order to sustain another human being’s life.

Human suffering is a vast, and complicated issue. YOU too have an ‘inalienable right’ to a good life yourself, fullfilling YOUR hopes and dreams. Your friend’s illness is not your ‘fault’ (you didn’t cause it), and that in itself limits the amount of ‘responsibility’ you actually ‘should’ take for him.

Grimly, those who are mentally ill can be - not necessarily through any ‘fault’ of their own, simply the ‘nature’ of their illness - a ‘bottomless pit’ of need. It can be exceptionally hard, if not impossible without, as I warn, paying the price of devoting your ENTIRE life to their sustenance and care, for ONE person to provide that care.

What, may I ask, do your own family think of this situation, sad though it is? If I were your mum (and I’m sort of assuming you’re quite young - as in in your twenties??), I would be both ‘proud’ that you are sufficiently compassionate to do what you are doing - but I would also be worried that you let yourself get ‘too involved’ and pay too high a price, long term, for that compassion.

All too often, alas, when it comes to caring for those with mental illness, carers ‘start out’ by believing that if they put effort and energy into ‘sorting things out’, that the patient will reach a stable place, and then the carers can ‘back off’ and ‘get on with their own life’ again.

But this is NOT always - or even frequently, or perhaps even ‘ever’??’ - the case with mental illness. It can haunt ‘life long’ and require life-long care, that’s why I give this warning to you to not get drawn in too much, or for too long.

“Am I my brother’s keeper?” is a VERY difficult moral question. And a sad one too.

8

Thanks again Jenny, I really appreciate your responses. That is a very salient question; for what it’s worth, I’m in my mid 30’s, independent, and due to my current lifestyle, have plenty of time to tend to my own needs and health even if I struggle with my bills. I’m not surprised I may come across as significantly younger, this whole situation is very new to me, and caught me in a moral and to some extent existential panic, not having had to face even a remotely similar situation with previous friends, family members, or acquaintances.

I have no ‘duty’ as such to have anything to do with my housemate’s care and well-being, this has very consciously been a choice to be involved and thinking as to what it would be like if the situation was reversed, and I had no-one other than the healthcare system of a country I’d only been in for a handful of years?

I’ve done some light research into the state of mental health \ NBD care in my housemates ‘home’ country, and pretty much everything I read suggests it is next to non-existent, my housemate has already had several times the level and frequency of care since the first hospital admission than they would get in 10+ years of equivalent healthcare back ‘home’. Sending them back would be almost a death-sentence.

The decision to make sure this person isn’t alone in this world, and to provide a helping hand where I can, or at least a friendly presence. This isn’t a martyr syndrome thing, it’s just I know my flatmate has no-one else they can reach out to, if they had a large cadre of friends and had family based in this country, they would certainly be dealing with the responsibility of all of this. I am safe in the knowledge that I am not bound to this course of action legally, and could just walk away at any moment if I wanted to or needed to, but for now, while I am of sound body and mind and it’s not dragging me down (although I have been feeling the signs of burnout and emotional stress a few days ago), this is constantly a choice I make in the hopes that I can help my housemate start to fight for themselves and support them as best I can as a friend, advocate, or simply recognisable face where they have no-one else.

It’s taken me some time, over the past week, with some amount reading and research to come to terms that this may not be an ‘episode’ that clears itself up in a few weeks or months, and that the living hell my housemate is going through may be a life-long battle, involving medication, therapy, and eternal vigilance, and many symptoms may never fully go away, and there may be many more ‘bad days’ than ‘good days’ for them.

I may be legally barred from ‘caring’ for them as such, and if it comes to that, that may or may not be provided by the state, but they at least need an advocate and friend that can be there for them, and to have their best personal interests at heart, to be there and at least give them the possibility of ‘hope’, that their lives are not over and they have something to work towards, whether it be assisting them with rebuilding their minds coping strategies and defence mechanisms over time, where the healthcare they may or may not receive may concentrate on just ‘sustaining them’, which clearly cannot be the ultimate goal, even if that outcome may be more likely or less likely, someone has to have belief for them and try and instil some of that in them if possible.

I’m currently looking into all the ‘little things’ I can do at the moment, I’m going to ask if I can bring them a cuddly toy to have on the ward (I understand this may not be possible due to concerns with nesting bacteria?), and get some simple games like Connect-4 and Top-Trumps to play with them to keep their mind active and in-use. Any thoughts at all?

Ultimately someone has to think positively, and be naive enough to think that some minimal level of ‘recovery’, or ‘normalcy’ can be attained with time, assistance, and persistence. I shudder to think of the NHS treating my housemate as another number to be swallowed by an under-pressure healthcare system where they need to clear the bed and save money and send them on an automated course of counselling \ therapy, and then spat back out into the ‘real world’ without support.

The current most likely long-term situation may be my housemate being interned in some kind of assisted living dormitory for people with mental health problems / disorders. They will still need a friend if not a carer. I don’t expect to be in a position where I am washing them, cleaning them, feeding them, or housing them, but I do expect they will need someone to help them with their finances, getting outside, social interaction, and having something that could loosely called ‘a life’. Even if they were fully compos mentis, that is not a situation I think they would possibly be able to accept anyway.

For now all I can do is ask advice and pick my fights and fight for them where I can and where it might help, I refuse to let them drift off into a semi-permanent catatonic state, without external support, and alone, that’s unacceptable to me. Sorry for the rant, It’s good sometimes just to get some of my thoughts of my chest. I don’t feel I can really discuss any of this with my friends as I want to protect my housemates privacy.

Thanks again,

P

9

I only assumed you were ‘young’ because you are clearly so idealistic!! And that’s a compliment! The young so often are far, far more idealistic that ‘we oldies’ who have grown weary and yes, more ‘selfish’ about our own lives and priorities.

I appreciate that if he comes originally from a poor country then yes, however inadequate the mental health care in the UK is, it might well still be preferable to what is available to him, especially if he has no large or extended or supportive family to care for him.

For all that, my ‘warning’ remains in place. At some point, you WILL have to set boundaries of some sort - ie, limits beyond which you will not go, however great his ‘need’ for a dedicated human being to look after him all his life - or be prepared to take your role as ‘brother’s keeper’ to the absolute extreme - ie, the dedication of your life to someone with life-long mental illness.

I hope it won’t come to that, and he will regain at least a functional degree of independence, to be able to re-take his ‘place in the world’ as someone who is not entirely dependent on others.

I wish you both all the best, kind regards, Jenny

10

PS - I always ‘add’ to the story of the Good Samaritan. Just how eager would he have been to rescue a stricken fellow traveller if EVERY TIME he made the journey there was yet another one, and another one, and another one, and another one and another one…

???