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

OP look up a bit on carer fatigue which it sounds like you are experiencing at the moment. You can also ask your family members keyworker for a carers assessment for yourself or your mum which is helpful, particularly at times like this.

You've reported your concerns now so let the team follow up from this point forward. Only contact them again if your FM starts to escalate (if it's out of hours, it needs to be A&E if you feel it's sufficiently risky that it can't wait until next working day) otherwise wait and report directly to the team.

The keyworker unfortunately may not be able to tell you very much right now, which is understandably frustrating at times, but the client needs to consent to them providing you with information. They can still gather information from you and act on that info of course so as I've said, any escalation is important to report and will inform their risk assessments and the actions they take.

If your FM shows intent to harm themselves or others, treat this as an emergency.

As for how to maintain the relationship with them during these times, try not to argue with them, de-escalate where possible and encourage them to engage in normal everyday activities to maintain their functional/occupational performance.

Hope that helps. Step away if you start to experience any significant deterioration in your own health.

I'm a big advocate for providing as much info about the process and being as transparent as possible about the challenges because it really helps to manage expectations and provide a bit of reassurance and sense of control for everyone involved.

I've just googled carers fatigue and I think you're right.

Several of the symptoms ring true to how I've been feeling this past few days which coincides with this relapse.

I'm more stressed and irritable and have been struggling to sleep. The lack of sleep is problematic because I have two young children one of which is autistic and they need me to be happy/healthy.

Am I being naive to the complexities of antipsychotic and mood stabilizers or is it really the case that if she would just take her medication none of this would keep happening?

I don't think she realises how stressful it is for me and mum.

No problem at all, happy to (hopefully) help!

One of the big things I learned early on in my career was that there is no way that anyone who is so acutely mentally unwell as I have witnessed, would ever make the rational choice to be that way.

Medication has its place, but often times, it is so difficult to get the right combinations/dosages etc that control your symptoms and yet allow you to have a reasonable standard of living. None of the medications come without side effects which can sometimes be as debilitating as the illness they are designed to treat in the first place. It's trial and error unfortunately, some people respond well, some respond well to a mix of meds and psychosocial interventions and some endure years of trying one thing, then another and always encounter a problem. There's obviously lots more at play throughout all of that which will help or hinder things too, so I suppose in summary, its very complicated.

OP I had this with my brother. He was seriously unwell and an incident happened where he was sectioned to a forensic mh unit. One of his discharge conditions was that he had to have an injection once a week.
It took a while for them to get the right drug/dosage but he is much more stable now. He will not always accept that he is mentally ill and definitely would not react well to a frank discussion.
It is so very difficult. My heart goes out to you but the only thing you can do is leave it in the hands of the professionals and be as non commital with your relative so that they can open up when they need to.
Its a long frustrating and often heartbreaking road for all concerned. Sending you all best wishes.

@Supersimkin2 I just want to say thanks for your post. I think it’s one of the only times I’ve ever seen someone say the person is selfish. My sister is mentally ill with similar diagnoses as the OP’s aunt and you can guarantee she will have a crisis as soon as the attention is not focused on her 100%. And by this I mean as big as a death of a close relative to her old child’s birthday. I feel like it’s a massive unspoken thing and for fear of being hounded I’ve never wanted to say it. But I do think it’s very common to be inherently selfish and use dropping medication/therapy etc as an excuse to control the family.

@Decoupage112 I’m so sorry you’re going through this and it must be hard for your mum too. I can’t offer great advice as my family all seem to just enable my sister’s disgusting behaviour to ensure she doesn’t maltreat her children. Only thing I can suggest is phoning her GP who may be able to advise you whose care she is under with the mental health team or similar.

It’s so so hard.

You obviously care about this FM and want to do what you can for them whilst balancing your own responsibilities. It's good to have that awareness of the impact this has on your own mental health so you can withdraw as needed/offer more support as able. Ultimately, you aren't responsible for them and its best to accept that you can only do so much and that the support you do provide is valuable to them.

@VanillaSpiceCandle I wouldn't entirely disagree with you, there are so many factors at play and there are no two clients who present in the exact same way, but certainly there can be behavioural aspects as you describe. It really does take the multidisciplinary approach to look at a person's situation from all angles to try and figure out the what/why/when/how etc and having that good link with whoever is closest with them in their personal lives adds a wealth of information to what we do and ultimately leads to better outcomes for the client when we can work together to find the best solutions.

I have personal experience of familial MH/addiction issues so I do have some idea of the range of emotions from frustration/anger/helplessness etc and on the flip side I often seen clients expressing guilt and an overwhelming sense of being a burden to those around them. That usually comes with increased insight on their part. Sometimes that level if insight is never gained or is fleeting and so the rest of the time, it really can seen all about them which understandably comes across as them being rather selfish. The difficulties associated with mental health do need to be considered in the same realm as that of physical health and given similar allowances e.g that whole thing that if you break your leg, you'd likely accept that your body needs x weeks to recover, and in the same vein, you have a breakdown/relapse of mental health, its going to take really an indeterminate amount of time to recover from that too.

My brother has a diagnosis of schizoaffective personality disorder. Is that the same thing? My family is full of people with various bloody personality disorders and they’re all impossible to live with or be around for very long. He is intelligent, but controlling and obsessed with magical/occult type things. He collects samurai-type swords and daggers that he sharpens and swings around in his bedroom. And tiny plastic skateboards that he zooms around on the table with his fingers. He has hundreds of both. He is morbidly obese and fancies himself as a drummer. He is 46 and has never worked a day in his life. This is all been facilitated by my mum who gave him money, bought him cigarettes and alcohol and paid his rent, bought him cars (that he wrote off) etc.... Doctor shopped and finally found a psychiatrist Williams to diagnose him with a mental health condition and then had him sectioned - and he was treated for many, many different mental health diseases for years. So if he didn’t have a genuine mental health illness before then, I suspect the drugs he was treated with finished him off. He can’t function at all in society now. However, he is aggressive, inappropriate and entitled and my kids and I are terrified of him. My parents are dead and I have had to block all forms of contact for our own physical and psychological safety. The extended family (who don’t see him) guilt trip me frequently as they have never had the abusive phone calls or all night banging on the door.

I really appreciate your input Scarlet it's most helpful being able to hear things from your side of the fence, so to speak.

As far as I know schizoaffective isn't categorised as a personality disorder, it's a mental illness characterised by symptoms of schizophrenia (hallucinations and delusions) and also a mood disorder, like bi-polar.

I can completely understand you needing to go no contact, justilou.

Vanilla, I feel for you too. It's a minefield trying to navigate these things and find the balance where you can support your loved one without it negatively impacting your life.

I get terribly embarrassed when she does things like harass my ex at his place of work or pester my neighbour. It's hard not to take it personally however I know there is no malice in it, she just doesn't see how it's not ok.

I have asked, then told, then demanded that she doesn't do these things but it's like talking to a brick wall.

Tilly thank you for your kind words, and I'm sorry you've gone through the same with your brother. The more I hear about those injections the more i wish my aunt would be given the same. I appreciate everything is dealt with on a case by case basis though and I recall a PP on a previous page saying that not all mood stabilizers are available in injection form.

Apologies if I've missed any comments, as I refresh the page they are jumbled. My phone is a PITA.

While it’s not the same disorder I can empathise with the toll it takes on your family. Your mum must be constantly overwhelmed with the responsibility of this, when she should be finished with looking after people now. As you said, her health isn’t well anyway. She needs looking after now. Mental health isn’t understood, nor is it tolerated very well when people are endangering themselves or others, or pestering or causing stress, or simply behaving inappropriately. There are simply no places for them to “go away” to, or get help, as they have the right to refuse it if they are not in danger. (The effects they are having on others is dismissed legally, unfortunately).... The police are frequently frustrated by their inability to help frightened or exhausted families/neighbors, etc... affected by people with diagnosed mental health conditions who have chosen not to take their medications again and again. Mental health in general is understaffed, underfunded unrewarding - as the people working in the industry get burnt out really fast. It’s often a thankless task. I hope your relative gets the help she needs to get back on track ASAP.

Weird in that she said what she was having for dinner. And then when I said, that sounds yum, she got annoyed that I’d used the word yum. Then kept repeating that. Then was saying ‘it’s tea, English tea. T, E, A that’s how how you spell tea. It’s tea. I don’t know why you said it was yum. It’s just tea’ We call the evening meal dinner so I don’t know what she was talking about. It didn’t make any sense. And she was very prickly with me. One of those moods where I can’t say the right thing.

@ScarletMouse thank you. I was really worried that I’d been tagged and would be harangued by someone but your message is so empathetic and refreshing. I suppose of course, in real life mental health professionals can’t usually say things like that which is why it’s so hard to deal with the family member.

Also it’s obvious now you’ve said it but it’s the level of insight. The most we ever have is a very inauthentic ‘sorry’ a couple of times a year. But perhaps she’s still not well enough to have enough insight into her actions. I always think when she’s lucid, she should know what she’s done and how it’s affected her very young children, my parents etc but maybe she’s just never going to be well enough.

@Decoupage112 I think the impact on your children could be bigger than you think and there’s nothing wrong with stepping away from helping slightly to make sure they’re not harmed from this behaviour. If you remember being scared of your aunt when younger, it’s only fair to reduce this risk for your own children.

The impact on serious mentally ill people’s families is so rarely spoken about and it usually ends up in the family being accused of not caring/doing enough/no empathy. This is refreshing. Thank you for posting.

@justilou1 I’m so sorry your family are unfairly criticising you. You are doing the right thing in protecting your family. I don’t have any children but if I did, I would have taken a huge step back from my sister as she is dangerous and damaging to be around.

Would it be fair to say your parents used to downplay his behaviour so your family don’t understand how bad he is? My parents and I have done this for years - I just went along with whatever made my mum happy which was not speaking about her negatively or honestly! I understand you may not want to but is there a way of telling them how bad he is so they’ll stop asking you to see him etc?

Can I ask, does your brother live alone?

Justilou, you're very right. It is often a thankless task. I was about to say that I couldn't do that job as it would be too emotionally draining, then had to remind myself that I've been dealing with this for 26+ years so I can relate to them in that sense.

The professionals don't have an easy ride though, seeing the patients at their worst. I was watching a documentary last night about the mental health crisis in Britain and I really felt for the professionals (the patients too, obv)

Vanilla, I share the same thoughts and frustrations as you. It has only been over the past couple of years that I have started to click on to how conveniently timed these episodes of noncompliance are. Again, like you, I rarely voice these thoughts out of the fear I'll be shut down as nasty, uncaring and spiteful - none of which are really who I am.

It was quite scary being a child and being taken around her when she was having an episode, I often wonder why my mother didn't shield me from it but then given the fact she has always been such a huge support to her sister.. I was always going to be exposed to some degree. I've vowed to sheild my children in the way that I wasn't.

A couple of years ago when my eldest was born she came off her meds and took to coming to my house late at night and banging on the door / posting things through the letterbox.

One night she text me to say she was on her way again and I'm ashamed to say I wrapped DS up warm and took to the streets with my pram for a walk at gone 10pm at night just to get away from the situation. That came after three nights in a row of her coming to my door, trying the handle, standing outside banging. For the first two nights I hid in my bedroom with all of the lights off, panicking.

I didn't have the heart to ring the police as I didn't want to hurt her and much like what vanilla said, we've found ourselves tip toeing around her illness and appeasing her to avoid "making things worse"

I don't want to be frightened of her when she's unwell but traumatic memories do stay with you. She isn't her true self when she's unwell and I've seen that she is capable of violence.. however long ago that may be.

ThickFast, that sounds like a very tense call. I feel for you. It's hard to keep engaging when you get a reception like that

I've been where you are, in my case it's my DB. Like my DSis and me, he has complex PTSD as a result of childhood SA. Undiagnosed in his case, as he claims to remember nothing about it so instead he was previously diagnosed as schizophrenic and now they think he's autistic. (I don't believe that; he was a perfectly normal popular little boy before the abuse started for him, a protective big brother who had our backs even though he enjoyed teasing us.)

He's on medication, but he's incapable of functioning as an adult. When we used to have him stay it was like having a third child, and we already have a DD with SEN, and both our DDs are adopted and have attachment issues. He used to scare them as well as he used to shout at them and bang into them, blaming them for being in his way. So we no longer have direct contact with him. I don't really have the headspace to cope with him either.

It's very difficult. It's similar to your dilemma, as my DM is finding it increasingly difficult to cope with him, as she's now 80 years old and has to listen to him idealising the memory of our abusive F, who she now knows abused us. So his care will soon be an issue for all of us.

What we've found is that if they think there's a family member who is looking after him, then it's very difficult to get him prioritised by the MH team. Your DM needs to make it clear to them that she can't cope.

Although it does sound like they are aware of the problem and are dealing with it in your family member's case, which is very positive.

Oh Mittens I'm so sorry, how incredibly difficult for you all. I don't think I would handle that well in your case, especially idolising your abuser.

I've taken on board what you said and I'll be discussing with my mother when I see her this afternoon.

I've had another brief chat with my aunt, she seemed less delusional than she did during the last call we had so that's good. I realise she's still clearly unwell though and it was only a brief call.

My mother has been having alot of contact with her over the phone so I'll see what she says about it all. Although she can't be there in person this week, the issue is still very much on her mind and she's fretting from afar.

@VanillaSpiceCandle - He's married, but they met in rehab - She's the more functional of the two. My parents are dead now, and my mother was the ultimate puppeteer. She manipulated with money. Once she was gone, he assumed that I would take on the mantle of Mum no 2. I have my own kids and wasn't making myself available to be screamed at and abused, or to have knives held to my throat. He inherited 85% of my mother's estate. It is held in trust by lawyers. I'm pleased that he is their problem now. I had to block another facebook pseudonym today.

It’s all just so sad. To know that someone’s life is like that is just so sad. You only get one life and this is theirs. I hate not being able to make it better.

I don't think crisis-creating is a specific symptom of schiz. because people with so many other illnesses do it, albeit in different ways. As do people with no illnesses.

Being selfish is part of personality, not illness, although some delusions encourage a person not to take their meds. and some people's intelligence takes a battering from the ravages of psychosis.

Not med-ing is very typical of schizophrenia - most common cause of relapse - and there you have your perfect storm.

OP, you, DM and SS need to have a long meeting in the next few months to make it clear to the CMHT and SS that daily care from family is coming to an end. Try to involve geriatric services as well, they're much nicer and there's more money around than for the mentally ill. (You don't say.)

I suspect fear of this lies behind your aunt' current episode, so the sooner you sort out a care plan, the better. Don't take no for an answer.