I think my family member with schizophrenia is off her meds. WWYD?

[Decoupage112]

Her condition is managed well with medication when she commits to taking it but a few times per year she will decide to stop and becomes unwell quite quickly.

I have woken up today to multiple rambling texts from her talking about how the royal family (a regular feature in delusions when she's not well) are conspiring with other celebrities to do this and that.

She isn't a conspiracy theorist at all, this only happens when she's on a mental health decline.

I'm concerned as whenever this happens it brings with it alot of stress and anxiety, she will do things such as coming to my home late at night and posting things through the letter box, banging on the door which frightens my small children, constant telephone calls etc.

I would appreciate some advice on how to deal with the situation.

Firstly, would you engage with the texts or not?

Also, if I make contact with her MH services will she know I've done that?

Thank you

Forgot to add that she isn't one of those people who are open / can be spoken to about her MH diagnosis.

The last time I saw her (last week) she was saying to my partner that she's not actually mentally ill etc.

That was the first red flag in hindsight but then that is the position she has always maintained, even when she's medicated and stable, so that alone didn't worry me until I got those texts today.

Urgh I feel quite teary reading this I have been in exactly your position albeit with a closer family member & some alcoholism thrown in.
Firstly you are doing absolutely the right thing by protecting your children

Sounds like you got the message through to the right person & that essentially is what your job is. IME do not ever offer to do things that you can’t do forever because the resources/funding etc will disappear & you will be stuck as the default.

Have you made sure her MH team have your contact details & are aware that your Mother is currently unavailable (& do they know how much support she has been providing?).

It is utterly miserable watching the inevitable descent

Hi gibbons thank you, and I'm sorry that you can relate on such a personal level.

Nobody in my friendship group can relate so it's nice to be able to talk here where I (and she) won't be judged.

I have told her MH support worker that my mother's support has decreased for the time being due to her own health so hopefully they'll take that into consideration when assessing her care plan. They do have my contact details if they need to speak to me for whatever reason.

It's scary how quickly these things can decline, she seemed ok when I last saw her.

Her last section was quite traumatic for all involved so I'm hoping her team can get things under control before it escalates to that level.

She trashed her flat completely last time, barricaded the entrance and threw paint everywhere. When she was being taken out she told the police she'd killed her cats so me and my mother had to go down, panicking at what we would find. We cleaned everything up and searched for the cats who were thankfully unharmed.

It's very stressful.

Oh god the cats thing must just have been awful. It is hugely stressful & I think for me it’s the futility that makes me despair

Mine is now in supported accommodation which is utterly amazing but it was preceded by many years of environmental health trying to evict him (I won’t explain why 🤢), having to get the entire flat gutted at least yearly, several medical hospital admissions - two required them breaking down his door, vast swathes of time when he wasn’t taking his meds, self medicating with other things, several police calls when he was seriously dangerous (the police have been amazing every time, kind, understanding but firm & purposeful.) etc etc

That was a long way round to say I get it! I try to enjoy the better times but accept that the bad times come in waves/cycles & often all I can do is get out of the way

OP just a quick note to say hope things are going OK.... Thinking of you...

@JuniperFather a person with MH issues and without medication, is not going to act rationally. It's not snitching and that's a ridiculous term to use about a family member raising concerns,

OP you're doing a great job, with her team etc, keep going.

Next week will be the anniversary of my DSis passing away, two days prior to her death things had escalated so badly, I managed to take her to A&E and get to see the on duty psychiatrist, she knew DSis well and she was admitted.

Sadly and bizarrely she died from a sort of unrelated issues three days later, but she didn't die alone, she was surrounded by people and for that I'm grateful.

The MH service can be hard to navigate, but keep going.

Don't engage with the delusions, stick to what-are-you-having-for-lunch type comms.

Hammer home to SS and the GP/shrink that relation is no longer supported by exhausted family who are too old/tired to cope.

When relation is better, have a go at her. Yep, I mean this. Point out how disruptive/frightening/damaging her behaviour is to others - and that's her choice. I know it sounds mean, but sometimes it works.

Thank you for the replies, I'm ok.

She called me yesterday and while i could tell she wasn't totally normal she didn't seem too bad. As in she's not a risk to herself or anybody else.

The MH team did contact her which she told me about. I pretended to be surprised and asked what it was about and she said just to check in and see how she was doing.

She wants me to contact them and tell them she isn't unstable, to get them off her back, but obviously I'm not going to do that. I don't know what/if any intervention they're planning.

A friend of hers was round there today so that's given me peace of mind that she has somebody with her.

She wants me to go round and see her on Sunday and I've said I will if I can. I'm not %100 if I can get the childcare but will try.

@doityourselfnow That really saddened me to read, I'm so sorry for your loss. I can't imagine how hard that would have been for you. You'll be in my thoughts as the anniversary approaches

When relation is better, have a go at her. Yep, I mean this. Point out how disruptive/frightening/damaging her behaviour is to others - and that's her choice. I know it sounds mean, but sometimes it works

Funnily enough that crossed my mind today. I'll bare it in mind!

Without wanting to sound horrible (but realising I probably do) I can't help but notice that this always tends to happen when other people have alot going on and can't spend alot of time with her - and while I know she might find it difficult not having constant company, the timing is always terrible and it just adds to whatever else is going on.

After I had a miscarriage and didn't want to see anybody, she came off her meds.

When my marriage was breaking down and I was struggling with that so didn't want to meet up as often, she came off her meds.

When my mum was dealing with some personal things and wanted some time alone, she came off her meds.

When my step dad died (who she had no relationship with at all) and my mum came to stay with me for a couple of weeks to support each other, she came off her meds.

When my DC2 was born and I was juggling two under two and struggling, she came off her meds.

During one of her sections when I went to visit her she explicitly told me that the reason she got unwell again is because I barely went round to see her, not because she stopped taking her medication.

It's both frustrating and saddening because she's such an intelligent person who knows how this goes every time. She does have capacity to make the right decisions, when medicated, yet always chooses to be noncompliant.

Whenever this happens and she ends up in hospital.. everybody (meaning me and mum) have to jump into action, take over maintaining her flat, go down there daily to feed the cats, back and forth to the hospital taking her supplies. It's really hard.

I know it's harder for her, believe me I do, but that's why it's so frustrating. Why do it to yourself?

God it’s such a worry isn’t it with someone in your family like this. My experience is that people feel better on meds so think they don’t need meds anymore. And also the side effects aren’t great. I also have small children and family member is 90 mins drive away. Sometimes a visit might only last ten mins. So I can’t put them in the car for 90 mins for a ten min visit when she might be unstable or aggressive anyway. It’s really hard.

Absolutely ThickFast, very similar here.

It's hard as it is but when you have young children to juggle aswell it's a nightmare.

Oops name change fail, I am the OP

I just feel immeasurable guilt. Had such a weird conversation with her tonight. I tried to keep it light but it’s all so fake. But I also can’t question anything or I get shouted at and accused and it’s awful.

@Decoupage112

Without wanting to sound horrible (but realising I probably do) I can't help but notice that this always tends to happen when other people have alot going on and can't spend alot of time with her - and while I know she might find it difficult not having constant company, the timing is always terrible and it just adds to whatever else is going on.

After I had a miscarriage and didn't want to see anybody, she came off her meds.

When my marriage was breaking down and I was struggling with that so didn't want to meet up as often, she came off her meds.

When my mum was dealing with some personal things and wanted some time alone, she came off her meds.

When my step dad died (who she had no relationship with at all) and my mum came to stay with me for a couple of weeks to support each other, she came off her meds.

When my DC2 was born and I was juggling two under two and struggling, she came off her meds.

During one of her sections when I went to visit her she explicitly told me that the reason she got unwell again is because I barely went round to see her, not because she stopped taking her medication.

It's both frustrating and saddening because she's such an intelligent person who knows how this goes every time. She does have capacity to make the right decisions, when medicated, yet always chooses to be noncompliant.

Whenever this happens and she ends up in hospital.. everybody (meaning me and mum) have to jump into action, take over maintaining her flat, go down there daily to feed the cats, back and forth to the hospital taking her supplies. It's really hard.

I know it's harder for her, believe me I do, but that's why it's so frustrating. Why do it to yourself?

It doesn't sound horrible at all. Mental illness can make people incredibly selfish, through no fault of their own. Very difficult to see things from others perspective if your own is so messed up.

You really can’t reason with her at all and need to always refer to professionals. You need to realise that the slightest thing you say or do could trigger a reaction that is not only awful for you but awful for her. Because when we stabilise again we then have to live with the guilt of what we have done or said, if we can remember. I have bipolar and anxiety and am under a MH team.

Without wanting to sound horrible (but realising I probably do) I can't help but notice that this always tends to happen when other people have alot going on

Not unheard of behaviour sadly. This is a recognized problem with people who are ill and don't have anything else in their lives except the illness. They manufacture crises to get attention.

How to deal with it: detach as much as possible. When it's over, have firm but fair words. It's the kindest thing to do for your aunt as any incentive to get pills down her neck does her a favour.

It's not very good for people to keep having 'relapses', created or not. Shrinks don't like it because it increases dependency, and it's a way of 'coping' that makes the patient's life worse.

I have to say OP, I know people who had to threaten their schizophrenic DM with The Bin to control the crisis creation. DM deliberately came off meds in time for family funerals, births, weddings, you name it. After 20 years of hell, and the police complaining, all the adult DC sat her down and used the phrase 'put away'. They could finally afford a private institution and said the next time Mummy was Off Her Meds, she would be taken in for treatment as per usual, but never let out. It worked like a dream.

Whether or not you want to take this path is up to you and your family, not sure I'd have what it takes to do that.

Also, you don’t sound horrible at all. I can understand your frustration at those situations happening and then her also having a crisis at the same time.

I can also recognise the attention-seeking timing of some crisis, so I don't think it's a coincidence that it has happened when your mum is unwell. Family events such as weddings are a particular trigger I've noticed with various people!

Don't feel you have to rush to her side if she is admitted to hospital. Visits seem to be quite limited in these days of corona which could be useful!

ThickFast, weird how? (If you don't mind me asking)

The reason I ask is because that's how I would describe conversations I have with my aunt. The focal point of the call is to ascertain that she's ok but once I've done that Its all just so awkward, she gets these grandiose delusions that she can change the runnings of the country, improve the NHS and the council housing shortage etc.

She's known to the police for making a nuisance of herself when not medicated and she sends emails, letters etc to MP's, the BBC and everywhere else.

I have an ex boyfriend who works in the army (she's obsessed with the army because her father fought in the war) and she would turn up to where he works with rambling letters and jars of sweets. Fortunately she never got to see him personally but he found out about the visits.

I discovered all of this when he contacted me on Facebook out of the blue and asked whether she had been "up London" recently. I didn't have a clue what he was talking about until he told me about the letter and sweets.

When he was told about the visit and asked whether he knew her he said no, but he knew straight away who it was. Her details were passed on to the police and she was told not to go there again.

When I spoke to her today she said how she had sent another letter there but I'm not to "worry about it"

He isn't stationed at that location these days thank god so may not get to find out about it, I hope.

It's mortifying for me because I have no contact with him anymore, we are both now married to other people.

She also latched onto my neighbour who she got to talking with a handful of times when she visited me, she ended up getting his mobile number without me knowing (god knows why he gave it to her - he's too polite - nothing untoward) and she calls/texts him asking for favours.

He drives and she doesn't, so just because he has been polite she thinks he won't mind ferrying her down to Dover when she fancies a break away.

A few months ago she liased with him (again behind my back) and talked him into agreeing to drive me, her and my children out of the city for a "few days away" by the sea side.

I knew sod all about any of that until she cheerily told me about the plan, after sorting it out with my neighbour.

I rushed round there, mortified, apologised and said it was absolutely inappropriate and we don't need to be driven anywhere.

He's understanding as his mother in law has bipolar, but it's still very embarrassing for me. We're not even friends, just friendly neighbours.

Supersimkin, ah so it's a thing. The only experience I have of this is with her, so whilst I've had my suspicions I've never had the bottle to address it with her. I've always accepted it as being just had timing.

Don't feel you have to rush to her side if she is admitted to hospital. Visits seem to be quite limited in these days of corona which could be useful!

Good point

So as you can see from my previous post, her deliberate relapses are not without consequences for me.

We are a small family and as such her focus is always on me, mum and people who know us personally.

If she's not posting things through my letterbox late at night, she's making phone calls to/about me, sending emails and letters and mentioning me, trying to stalk my ex boyfriend from many years ago, showing me up to my neighbours etc.

My mum lives in a housing complex for older people and my aunt set the fire alarms off there on purpose because mum wouldn't let her in, this was last year. She frightened another resident in the process.

The fire brigade and warden arrived banging on mum's door and she got a serious bollocking for it which was embarrassing for her and could have cost her - her home.

I don't mean to paint her in a bad way as she's a very kind person and very loving, but the whole thing is incredibly stressful.

Haven't read everything but just wanted to say from a MH professional perspective, it makes our job so much easier when a client has a supportive family member who can identify the early warning signs.

Due to massive caseloads (as well as the additional issues posed at present) we just cannot review everyone with the frequency needed to identify a relapse. If someone has been stable for even a matter of months, it's usual to reduce contact and allow that client the space to self-manage their condition so if things deteriorate before their next review, we really depend on them having the insight themselves or those around them to know and make contact, so you did the right thing contacting the team.

Someone with such frequent relapses will have a keyworker who will be the best point of contact and will coordinate any interventions. They will have a direct link to the Psychiatrist and when advised of deterioration in mental state, will increase contact to monitor mental state. As concerning and potentially distressing as their behaviour may be at the moment, unless significant risk to themselves or others is identified, they won't meet the threshold criteria for detention. If it gets to that stage and they are consenting, the aim will always be the least restrictive option i.e. the home treatment team who provide a kind of "acute care at home" service, so more frequent contact and increased abilities should things escalate further.

If successful in their efforts, the clients mental state should stabilise and they will be discharged back to their community mental health team who will follow up with more regularity in the first few months before reducing contact again as above. (This might help to explain your family members pattern of relapse)

Due to caseload pressures, its unfortunately the case that there is ALWAYS a crisis which obviously has to take priority, so the work that we would want to be doing in relation to relapse prevention often ends up taking a backseat. I'm sure there's an anecdote that explains this cycle really well...

Thank you Scarlet, for both your very helpful post and the work that you do.

As a relative of somebody who has been under those services for a very long time I've seen alot so I appreciate your job isn't an easy one.

@ScarletMouse hope you don't mind me tagging you, I have a couple of questions that only sprang to mind after I pressed send on my reply.

In regards to the medication she is on (I don't know the names but there will be anti psychotics and mood stabilizers - they have changed a few times over the years) if she were to comply with her treatment and take everything as instructed.. would it be fair to say that she probably wouldn't relapse?

I'm in my late 20's and have grown up watching these relapses happen regularly - since I was a small child.

That being said, is it probable that she has been noncompliant for decades?

How well does the medication work, to the best of your knowledge?

Apologies for all the questions. I'm very glad to have your input on the thread.