When someone disengages from mental health services & medication - advice for family?

LookingFor

Hi all,

First, sorry if this is in the wrong forum.

I'm just hoping maybe someone can give us some advice on how to handle this. There seems to be a serious lack of support/advice out there for people in our situation.

I live at home with my 32 year old brother, and my parents. My parents are past retirement age. My brother has had a difficult experience. He was disagnosed with epilepsy as a baby, been on medication for that all his life. He had difficulty getting on socially in school and getting on in work. He was basically no friends and no real social outlets. My parents did their best to get him through school and college, but he was let go from two jobs and has been unemployed since. He took an unfair dismissals case on the latter job and won it, but was not reinstated. There was always something 'different' about him - we're learning now that he probably had undiagnosed Aspergers.

After he was let go from his last job he had as severe mental breakdown and spent about six months in hospital. He was disagnosed with manic depression, schizophrenia etc. This was a few years ago. He came home and started a course in college, but late last year seemed to have a big relapse. He did not go back to hospital, but attended a day hospital as an out patient, for therapy/occupational therapy. He had really a mountain of issues to do with resentment/bitterness over how he was treated in work, phobias he had acquired, guilts about previous gambling etc. He was put on two medications (Seroquel and Effexor) alongside his regular anti-seizure medication. In April, when my parents were away, he stopped taking his medication completely and had a severe seizure. Went to hospital, they checked him out and sent him home.

While in the day hospital he's acquired big 'issues' about medication and the mental health services, mostly we think from other patients. He started complaining that the medication was doing him no good and just causing side effects. To the point now where he is refusing to engage any more with the day hospital. He skipped an appointment with his psychiatrist last week - telling us he went, and what happened, but we know from the hospital he didn't go. He was due today to go to the day hospital to be discharged - they can't do anything with him if he won't cooperate - but he refused to go. He stormed out of the house after an argument about it this afternoon. Meanwhile he has said he will no longer take any medication once his current prescription runs out - and we can't get any more prescriptions for him if he isn't going to the day hospital.

There have been massive rows at home over the last few weeks. A new development is that he is very verbally aggressive whenever anyone disagrees with him. He regularly and loudly complains about 'the system', 'this country', doctors, policemen - any authority figures basically. He's frankly unpleasant to live with at the moment. It is impossible to reason with him about medication. He denies the seizure he had earlier in the year was actually an epileptic seizure. His behaviour is very difficult for us to handle. My father has come close to taking a fist to him. I have found myself, to my shame, pushing him out of my room and down the hall when he was point blank roaring at me for several minutes.

My parents are now wondering what to do. They are talking about trying to have him committed. I don't think that can or will happen and would probably sew more problems for down the line. The day hospital seems to be helpless from an advice POV. They seem to think that if he wants to do disengage, fine, but they have no advice for those of us left to live with him and the potential (probable?) consequences.

Do we let him make what we think are big mistakes here? Neither my parents, nor I, want to be waiting around living with him, waiting on tenterhooks for the next seizure or mental breakdown. We're kind of at our wits end and don't know what to do about it. I have floated the idea of us moving out to my parent's holiday home and leaving him to live as he wishes, and independently from us, to give us all some space from each other, but then I wonder if something did happen to him, would we be marked out as negligent or something?

Just don't know. Sorry about the length, thanks for reading if you got this far.

username123

Hi OP,
What an awful situation. I can suggest a couple of ideas to you, up to you if you wish to follow up or not - you may already have tried some of this.

Have you spoken to your local public health nurse for advice? She may be able to direct you to the correct medical person/service to assist.

Have you spoken to your brothers GP? What are the medical people in the day hospital saying? Keep a record of all and any people you contact medically regarding this - you will not be seen as negligent if it is clear you have contacted the medical community for advice.

What needs to be ascertained here is the degree to which your brother is competent and capable of making his own decisions. My own father was a danger to himself and others due to persistant alcoholism/mental health issues. He was deemed medically and legally capable of making his own decisions though so there was nothing we could do except allow the crisis to happen. You are quite correct in that there is little support or advice out there.

If your brothers medical experts (and this is what you may be able to find out by talking to the GP), reckon that he is medically and legally capable of making his own decisions, ie, not possible to have him committed on the basis that he simply doesnt know what he is doing, then you need to decide as a family what the best path forward is. It is clearly detrimental to the three other people to have him in the living environment he is in while refusing to take his medication. It might be better for everyone if he were to go onto a social housing list , and have the family keep a strong eye on him without having to live with him? Is this even something that would be considered? Would he be capable of living alone? Is he able to take care of himself (I mean the activities of daily living, preparing food, washing oneself, keeping a home clean etc..) or would this be beyond him?

You may think that Im terribly cruel to suggest leaving him to get on with it himself alone - I am not suggesting turfing him out - but if he is capable of independant living then this should be explored - for the sake of all the other people being affected by his behaviour - yourself and your parents.

If this is not a runner, then you must investigate the possibility of some kind of support for the family or long term assisted living for your brother - the public health nurse may be able to assist with this.

You dont say what age you are but let us project into the future, when your parents are passed on, who do you envisage looking after your brother - will he continue to need 'looking after' his entire adult life?

Or is some of his 'looking after' as a result of this being the situation that has been allowed to develop as a result of his conditions?

In the current situation, sometimes its actually better to allow a crisis to develop so that the person ends up under medical care. Its very hard to do this - but you cannot be expected to live someone elses life for them when they are quite simply not capable of being reasoned with.

LookingFor

Hey username...thanks for your reply, it's really appreciated.

username123 wrote: »

Hi OP,
What an awful situation. I can suggest a couple of ideas to you, up to you if you wish to follow up or not - you may already have tried some of this.

Have you spoken to your local public health nurse for advice? She may be able to direct you to the correct medical person/service to assist.

The only people we're in contact with are the people at the day hospital, his psychiatrist. We haven't spoken to a general public health nurse yet.

username123 wrote: »

Have you spoken to your brothers GP? What are the medical people in the day hospital saying? Keep a record of all and any people you contact medically regarding this - you will not be seen as negligent if it is clear you have contacted the medical community for advice.

That's a good idea, I'll do that.

As far as I know, their advice has been:

1) He's no longer depressed as he was earlier in the year
2) The 'outbursts' are actually a sign of growing assertiveness in their mind, a sign of recovery from depression perhaps
3) He should be on medication for at least another year
4) If he isn't going to engage, they'll discharge him.

After he stormed out of the house today, we rang them and told them everything that happened today, and they just told us to call the gardai if we were concerned he could do something stupid. It's just awful that there's really no guidance/help for the people around an individual in this situation. We kind of have the impression they want rid of him. We're also suspicious ourselves now that the Effexor they prescribed him may be responsible for the personality change, the aggression...but hey, it's just a theory. We're trying hard to rationalise all of this.

username123 wrote: »

What needs to be ascertained here is the degree to which your brother is competent and capable of making his own decisions. My own father was a danger to himself and others due to persistant alcoholism/mental health issues. He was deemed medically and legally capable of making his own decisions though so there was nothing we could do except allow the crisis to happen. You are quite correct in that there is little support or advice out there.

This is my thinking. I should say that since my last post he has come home, and there was a huge row. I walked in on it from being out so I don't know how it started, but it became evident that it had been brought out in the wash that they knew he hadn't gone to his appointment last week, knew he'd lied about it etc. It sparked an unholy row. He ranted and ranted about his last employer, the previous one, his schooling, teachers, and then finally accused my father of beating him with a brush when he was 9. This, to my knowledge, and that of my sister (who was present this evening) never happened. They recall the context he talks about, but not any beating with a brush. When my brother gets going it's like one long disjointed stream of consciousness about all the ills and issues he seems insistent about not letting go of, and it seems some of them now are starting to get distorted and imagined. I think now when he reads about things and hears someone talk about their own experience, he obsesses over it, and self-analyses wondering if he has or is suffering the same thing. After a row he often takes now to singing at the top of his voice, as if to block it out or appear 'happy'. He's done this unabashed in public even. To any casual observer, they'd frankly think he was crazy.

Needless to say it's been hugely upsetting, and my father seems insistent on contacting someone to find out about assessing him with an eye on a commital.

Like you, though, I'm not sure that can go anywhere. Despite that fact that I think he is clearly not well, the rules are obviously very strict and specific, and I don't think he'd fall under them. And I'm not sure it is the best answer - I think it would sew more problems for down the line - but then all our options seem pretty terrible at the minute.

username123 wrote: »

If your brothers medical experts (and this is what you may be able to find out by talking to the GP), reckon that he is medically and legally capable of making his own decisions, ie, not possible to have him committed on the basis that he simply doesnt know what he is doing, then you need to decide as a family what the best path forward is. It is clearly detrimental to the three other people to have him in the living environment he is in while refusing to take his medication. It might be better for everyone if he were to go onto a social housing list , and have the family keep a strong eye on him without having to live with him? Is this even something that would be considered? Would he be capable of living alone? Is he able to take care of himself (I mean the activities of daily living, preparing food, washing oneself, keeping a home clean etc..) or would this be beyond him?

I've been slowly emotionally detaching myself - or trying to - for my own sake the last little while, and slowly been thinking that if he wants to make these decisions, and behave this way - fine, but do it in another house. That's what I've been thinking. I have suggested the idea to my mother but she sees all the problems there, and would, I think, almost see it like an abandonment of him. I brought up the same point you did - that this is something that'll have to happen sooner or later, him living independently. It can either happen when my parents have passed, or sooner.

I do wonder if we need to just give him the space, or create the space for him to live on his own and make his own mistakes. But of course there's risks here. He could have a seizure alone in his house/apartment and do himself an injury or worse. He could slowly deteriorate mentally. But as I say to my mother, ultimately we're going to have to let him make the decisions involved with living on his own - whether he takes medication etc. etc. - because there'll be no one left to watch him.

I'm 27 by the way. I think the idea of assisted living could be interesting, and I thank you for raising that...I'll try and do some research into that. A potential snag with that, or with a nurse visiting him, is that right now he's completely opposed to any contact with any mental health professionals.

Naineen

we're in the same position, but with a parent. The support for families of someone with a mental illness is very poor - I find. Maybe we haven't found the 'right' advice or group yet, but most of the time, I feel you are very much left to deal with any isssues on your own. This goes from 'how to handle someone with a severe manic episode' to getting this person involuntarily committed, to simply getting everyone involved in the care to be on the same page (for lack of a better phrase).

The worst part for us is the fact that the GP and the psychiatrist may not communicate with each other, one getting 'lulled' in by the patient to change the medication against the other doctor's orders, conflicting information, family not being kept in the loop, that kind of stuff.

If you manage to get everyone on the same side, you have won half the battle. This is especially important if you are looking for a committal to a psych hospital - you will need everyone working together. We had to do this a number of times, and the feeling this leaves is awful, almost like betrayal - but in most cases it is the best for the patient.

I also find that there is no real concrete advice on how to deal with someone who shows aggressive abusive behaviour (as part of their illness), which creates a strain on the people who are subjected to it.

I realise I am not helping as much with concrete information, but maybe it does help to know that you are not alone.

Also, if your brother has bipolar (never mind any other issues), I dont think letting him live on his own to make his own mistakes is a good thing - he wouldnt think rationally, and would not learn from it - when he's high, he may be impulsive, manic, and very irrational - but when he's low again, he won't necessarily remember anything he did - and he will repeat the same 'crazy' behaviour when he's high again. It's the illness, not his personality, thus there won't be any learning effect. Best case, the family is left to pick up the pieces (especially in terms of finances, for example), worst case he'll do himself or others harm. By the way, I am not speaking as a medical professional (since I am not), just purely from observation in my family.

I'll try to think of anything else that may be of help...and wish you the best of luck dealing with your brother - and hopefully a solution that's beneficial to everyone!

username123

LookingFor wrote: »

The only people we're in contact with are the people at the day hospital, his psychiatrist. We haven't spoken to a general public health nurse yet.

It could be worth contacting the public health nurse, there may be some assistance for you or your parents that she could know about.

LookingFor wrote: »

After he stormed out of the house today, we rang them and told them everything that happened today, and they just told us to call the gardai if we were concerned he could do something stupid. It's just awful that there's really no guidance/help for the people around an individual in this situation. We kind of have the impression they want rid of him. We're also suspicious ourselves now that the Effexor they prescribed him may be responsible for the personality change, the aggression...but hey, it's just a theory. We're trying hard to rationalise all of this.

This is very interesting. It would seem to indicate that his day hospital people think that he is mentally capable of making his own decisions and that he if breaks the law its the guards who should be called as opposed to the men in the white coats.

Is it possible that your brother is capable of taking care of himself, but that through selfishness or other personality trait (as opposed to his mental health issues preventing him) is not doing so, is being unreasonable, and people are excusing this because of the history of mental health issues?
Is it possible that drugs he is prescribed give him nasty side effects, but that the personality change is actually just him acting out and not uncontrollable?

You probably dont know the extent to which things are his illness/drugs and which things are willful. It would be worth finding out what the doctors think about this - especially given the advice on contacting the guards above.

LookingFor wrote: »

This is my thinking. I should say that since my last post he has come home, and there was a huge row. I walked in on it from being out so I don't know how it started, but it became evident that it had been brought out in the wash that they knew he hadn't gone to his appointment last week, knew he'd lied about it etc. It sparked an unholy row. He ranted and ranted about his last employer, the previous one, his schooling, teachers, and then finally accused my father of beating him with a brush when he was 9. This, to my knowledge, and that of my sister (who was present this evening) never happened. They recall the context he talks about, but not any beating with a brush. When my brother gets going it's like one long disjointed stream of consciousness about all the ills and issues he seems insistent about not letting go of, and it seems some of them now are starting to get distorted and imagined. I think now when he reads about things and hears someone talk about their own experience, he obsesses over it, and self-analyses wondering if he has or is suffering the same thing.

Needless to say it's been hugely upsetting, and my father seems insistent on contacting someone to find out about assessing him with an eye on a commital.

Like you, though, I'm not sure that can go anywhere. Despite that fact that I think he is clearly not well, the rules are obviously very strict and specific, and I don't think he'd fall under them. And I'm not sure it is the best answer - I think it would sew more problems for down the line - but then all our options seem pretty terrible at the minute..

Yes, Im not a mental health professional, but I think any one of us who is close to someone can recognise when they are not being 'themselves' - but the big question is - do the mental health professionals think that despite this he is legally and medically capable of independance?

Im not sure a commital would go anywhere either, its very hard to have someone committed in this country, short of them murdering someone. Plus, then you have the further problems to worry about etc... I dont think it will happen anyway so try not to worry about that anyway.

LookingFor wrote: »

I've been slowly emotionally detaching myself - or trying to - for my own sake the last little while, and slowly been thinking that if he wants to make these decisions, and behave this way - fine, but do it in another house. That's what I've been thinking. I have suggested the idea to my mother but she sees all the problems there, and would, I think, almost see it like an abandonment of him. I brought up the same point you did - that this is something that'll have to happen sooner or later, him living independently. It can either happen when my parents have passed, or sooner.

I do wonder if we need to just give him the space, or create the space for him to live on his own and make his own mistakes. But of course there's risks here. He could have a seizure alone in his house/apartment and do himself an injury or worse. He could slowly deteriorate mentally. But as I say to my mother, ultimately we're going to have to let him make the decisions involved with living on his own - whether he takes medication etc. etc. - because there'll be no one left to watch him.

While I can empathise with the abandonment feelings, I think its important that you (gently) point out to your mother 3 things:

(1) Your brother is not actually getting any better or being helped in his current living environment, and in fact could be suffering even more by having his life 'run' for him and being made answerable, at age 32, to his parents regarding his medical appointments (not saying they shouldnt ask him, but he may see this as very invasive).

(2) Look at all the other people who are being emotionally and physically (through stress) affected by your brothers behaviour? Is 1 person worth more than 3 other people? Your parents also have a responsibility to themselves, each other and to you - the world should not revolve around your brother.

(3) You cannot help someone who refuses to help themselves. It just doesnt work. Off the top of my head I can think of a few ways of your brother living independently where he is not just being abandoned and where he is warned of seizures - family dropping in, a seizure dog, reminders for medication etc.... There are ways - its just to find ways that are acceptable to everyone.

Im not sure if its entirely healthy for an adult to be getting treated as a child to such a degree - in the situation where he is intelligent enough, capable of, and responsible for his own medications and medical decisions - there should also be consequences for making decisions that in fact make the situation worse for everyone - such as having to deal with the fall out of not taking his own medication - alone.

Do you think, as an adult, that your brother could have made better efforts towards independant living in the past 10 years or so and just didnt?

LookingFor wrote: »

I'm 27 by the way. I think the idea of assisted living could be interesting, and I thank you for raising that...I'll try and do some research into that. A potential snag with that, or with a nurse visiting him, is that right now he's completely opposed to any contact with any mental health professionals.

Thats a pretty big snag - but something that could potentially be worked on - by him.

The whole thing sort of hinges on his mental capacity and whether or not he is capable of making decisions in his own best interests. If the doctors think that he is then I think that you and your parents need to accept that (I think you have accepted it), and start dealing with him less as a 'sick' person and more as an irresponsible one. If its purely his illness causing all the problems and he is not capable of making his own decisions - then the medical community need to step up and help you guys.

One way or another - its extremely important that you remember that you have to look after YOU. You cannot be responsible for your brother. You can offer help, but if he is not willing to take it then your hands are tied and there is little point in forcing it.

liquoriceall

Hi OP I can sympathise with you we also have a family member with severe mental health issues who refuses to take his meds half the time, does the usual 'theres nothing wrong with me', 'its all (insert job/school/parent/etc) fault'. If ind the most difficult thing to cope with is my parents inability to face reality in the situation and like you also insist on living in the same house even though other family members are endangered by this decision. You cant make anyone do anything and I would advice that you and your parents seek a meeting with your brothers team to discuss the future trajectory of your brothers illness to enable reality to be accepted
I would also be reluctant to go down the route of sectioning your brother as you are likely to pay for it later, Im afraid that all we end up doing is sitting back and waiting for him to get so bad that they admit him of their own violation
Sorry I cant be more positive but I feel that emotionally disengaging is the best thing to do

An Bhanríon

All the advice above is very good so I don't have much to add except to add my support to you. You are probably doing the best thing posting here trying to find people who were in a similar situation as most healthcare professionals in the area of psychiatry have never lived with somebody with mental illness and therefore have no idea whatsoever how crap it is and how to actually deal with it.

My main advice is that you and the other members of your family take care of yourselves (even if this means that some idiots out there mght call you negligent). Try to work on your own relationships as you are going to need them. And if the people around him have good relationships this will have some effect on your brother although it may not be immediately obvious. It will make him feel at least slightly calmer (could be very slight, I know!)

Be good to yourself, OP. You know you are trying your best so don't let anyone tell you otherwise.

Oh, yeah. Public health nurses can be great as in even if they have no great expertese they are another person watching out for your family member. And somebody mentioned keeping records. I think it is important to keep records regarding incidents, moods, etc., and date everything. It could be very helpful to hand to a medical professional at some stage. When he is a bit better it might also give your brother some perspective on how difficult his illness is for you. Only when he has calmed down, though, of course. (And, then again, this might never become an option... we relatives of the mentally ill need to tread very carefully at all times...)

Best of luck!

LookingFor

Sorry for not checking in on this thread more regularly...I just want to thank you all for your advice.

The last couple of days have been up and down. We've had everything from my brother throwing away his medication (over the back wall into a neighbouring area...), to rifling through the house looking for the rest of it whenever my parents aren't looking, to now - we think - him not actually swallowing his medication and spitting it out in the bathroom.

It's obviously unsustainable. It's sad and just kind of heartbreaking now. We're resigned to things now as far as his disengagement from medication/treatment goes. He's at an appointment today with a neurologist regarding his vulnerability to epilepsy and medication around that (a follow-on appointment from the treatment for the seizure in Feb). My parents went with him to ensure he attends, but I imagine it's going to be a nightmare. My parents have said that if after this appointment he's refusing to take his meds, they're throwing their hat in on that.

We'll just then have to harden and prepare for the potential fallout. Hope that in time he'll be in a place where he's willing to re-engage.

Just one piece of advice for anyone in similar situations - think really carefully about group therapy. In hindsight now I think it did him a huge amount of harm. I'm sure it can help some people, but he was too vulnerable and impressionable to be in an environment where he could pick up so many paranoias - about medication, psychiatrists, police, 'the system' etc. - and negative beliefs. He disimproved hugely over his therapy at the day hospital.

The sad thing is that I think the psychiatrist convinced herself that he actually improved. So the feedback of his experience will probably go ignored.

If he ever wants to re-engage we're going to find him private 1-on-1 care and mentoring. I feel like we inadvertently messed up so bad by entrusting him to the public system (where group therapy is likely the norm for cost reasons).

Fionne

I really can empathise as I have a similar situation with my dad refusing to take his medication as a way of punishing my mother when they've had a row. Childish and very frustrating!

Like your family, we've been fobbed off plenty of times in crisis situations, even had a doctor refuse to come out at night once when the gardai had to find him when he'd taken off saying he was going to commit suicide. The doctor said she wasn't going to travel the 10 miles to where we live and so he literally had to be forced into a car and sat on while he was driven to a doctors to get something to calm him down.

The medical professional's attitude seems to be that it's the family's problem and just go home and deal with it, there's no support or back-up, you're just left living in a kind of hell and suffering with the immense stress of it all.

I hope your brother recovers and that your family has the strength to get through this.

Just one thing, I do agree with another poster about the possiblity of finding your brother somewhere else to live if that's possible, the strain on you and your parents is huge, you won't really understand how much it is affecting you until the situation is resolved and you see what a calm, peaceful life is like.

I know that in my case, I ended up suffering with Generalised Anxiety Disorder, which I'm sure comes from the years of living with the stress of my dad's behaviour. Even now, though I've moved out, I live nearby and see far too much of them sometimes for my own good.

JuliusCaesar

A public health nurse is a general nurse who looks after babies, old people and disabled people.....

I think the other posters may be trying to refer to a Community Mental Health Nurse aka Community Psychiatric Nurse.

However, a Psychiatrist does not work in isolation but within a team which is probably made up of psychiatric social worker, psychiatric OT, psychiatric nurses etc. The Social Worker may well be the most useful person to you in this situation, in terms of providing support to the family. They may be able to arrange supported housing for your relative, so that he can move away from the family and live semi-independently. They may be able to organise counselling for him within the health service - most mental health professionals will have had counselling training. HTH.