Mental capacity?

[Treehugger63]

Hello All,

New to these boards but I'm guessing many will struggle with this same issue. How do families cope when someone has been deemed to have capacity but then uses it to refuse all help and still clearly remains distressed (& distressing!)? My fear is that this is a situation that could continue for some time. I just don't know how to promote engagement or insight and I've come to the conclusion that the services don't know either.

[bowlingbun]

I'm afraid very often the situation remains until there is a crisis of some kind. The problem is that there is an assumption of capacity unless proved otherwise, and lots of social workers don't want to be the one to make the decent decision. However, whilst capacity is supposedly OK, for goodness sake try and get him/her to sign a Power of Attorney!! Often, the very fact that they say they are OK when they clearly are not is a sign of loss of Mental Capacity. A minefield.

[Elaine]

Hi Treehugger,
Hello and welcome.
It's a common problem and very hard to deal with. Are you prepared to tell us a little more, for example how old is this person, what relation and are you living with them?
How long has it been going on? What type of behaviour? Who deemed them to be capable and in what circumstances?
For example dealing with a parent whom you suspect of showing signs of dementia is very different to dealing with a sibling or young relative whom you think may have MH issues.
Some of us will have been where you are (bought the biscuits and the T shirt) but where are you in the greater scheme of trying to care?
If you would share a little more we would be more than willing to share what we know or have experienced or just what we think might help.
Elaine

[Treehugger63]

Hello again,

I am a carer for my elderly mum, with which I cope very well emotionally and practically because, well, she's in her 80s and this feels like the natural order of things. She has full capacity and just needs help organising things and putting them into practice - getting workmen round, cleaning, doing shopping etc, plus just sharing a bit of time together, which feels valuable and precious.

For the past 4 years, though, I have also become a carer for my son, who started to behave strangely from around the age of 15. Having previously been very popular and outgoing, he became reclusive and withdrawn. He also stopped looking after himself, becoming very dirty and unkempt. At first I thought it was an adolescent stage that, with our support and encouragement, he'd soon leave behind. But then he started disappearing for long periods, saying he was staying with friends ("Good" we thought) but actually sleeping rough in local parks and farmland. He then refused to go to college because he said it was full of "negative energy." He also refused to come home again, for the same reason but refused to see a doctor on the basis that, "They'll just want to diagnose me with schizophrenia and stick needles in me!" He also insisted that he'd punch any doctor that came near him, but the pattern of behaviour continued and, in order to save him from sleeping rough we ended up staying in various holiday cottages over a period of 6 months. Each cottage soon became "contaminated," making him distressed and exacerbating behaviours like spitting, pacing or playing energy clearing videos on Youtube, and we had to keep moving. At the same time the GPs insisted that he'd have to come in personally to see them as he couldn't just be referred to the relevent services. And various charity helplines we called explained that we'd have to wait for him to get worse before involving social services or the police.

Eventually we got him to see the GP by explaining that the cottages would be unaffordable without him claiming ESA, for which he needed a doctor's note. This is how we eventually got to see the early intervention team and we're now over our 3 years with little improvement. Our son says "No" to everything. The meds he had to take to avoid hospitalisation didn't work (several anti-psychotics in different doses were tried) and this has reinforced his stance. Two separate psychotherapists have said he just won't engage or set any goals and so we need to wait for him to be "ready." We've moved house because the old house became too contaminated for him to bear (without heaving and feeling faint all the time) and we're not about 18 months into our new home, with many of the problems continuing. He has simply refined his patterns. He disappears for long periods but now takes care not to involve the police (which happened a few times, once when we reported him as a missing person). He does his pacing and exercise rituals, avoids most contact with us, remains filthy and gives minimal answers to the CPN and the consultant - enough to make them go away. He is now wise to the ways of the MH professionals and the CPN tells us that he comes across as having capacity. He is of the firm belief that our son would easily talk his way through a MH assessment and now the consultant is talking about discharging him. She says he definitely doesn't have psychosis, which I find hard to believe.

I am very worried. My son is now 21 and I don't know how to get help. I've really, really tried but I've failed.

[Elaine]

Oh my gosh Treehugger that's very hard on you. Elderly Mums I know all about. Mine is 99 and today I took her for her first ever respite care and she is being brave but doesn't like it one little bit. Your mum sounds great but be aware that she might deteriorate physically, mentally or both, very rapidly. Or she could be well, sprightly and fully aware for years yet. (My Mum is a very different caree from when she was your Mum's age).
I'm sorry. I have no experience of your son's problems. Hopefully others here will understand and offer suggestions. You have obviously gone to the very limit trying to help him. Forgive me, I ask in ignorance, but do you think all the moving etc has in any way enabled his condition? I mean, has giving in to it helped or hindered? As I said. Ignorance on my part.
Wishing you well
Elaine

[MrsAverage]

Treehugger
You have not failed. The mental health system is not good and there are many like your son being ill-served by it. You have done well to get him into the system at all and to fight for and support him all this time
I know there are forumites who will have advice and support. I am fairly new and my sons problems are different so I don't know what else to say except read some of the other threads in 'mental health' and 'aspergers/autism' to realise you are not alone. Lòok at posts from Melly1 and Stephanie_1502 in particular
Also lòok at the mind and rethink websites
I hope some it the other regular 'mental health ' posters will be along soon as I am going to be away on holiday from tomorrow
I send virtual (((( hugs))))
MrsA

[Treehugger63]

Many thanks. It's extremely difficult and I think I've just about exhausted all options. There was, it's true, a certain element of "enabling" about our touring around but our son had made it clear that he would otherwise continue to sleep rough and services wouldn't, at that stage, help us. I asked several charities and also the GPs 3 times. We felt, and still feel, that we are being held hostage by our son's problems. Because of moving around and then moving house, plus because of one or two members of staff moving away too, we are on to our 5 th opinion too! None of them have given the impression they know what to do, although they seem to have a range of meds that can be tried (done) and therapies that can be offered (all refused). He's had one mental health assessment and avoided sectioning by agreeing to take the meds. If these had actually worked, all would have been well.

At home I have tried to keep positive and supportive, but all the time whilst feeling as though I'm dying inside. I've deliberately avoided high expressed emotion plus have talked to him (at the stage where he would still talk) in a very empathic, non judgemental way (ironically, I had just qualified as a person-centred counsellor before all this kicked off). We have also made the environment as nurturing as we can, remaining encouraging and giving opportunities for safe, positive experiences around the home and little, confidence-boosting successes in gardening (growing veg) or cooking. All of this might have some effect but I fear it is merely to prevent things from getting worse. Overall, in fact, I think that it would be very easy to make things worse but that it's well nigh impossible to make things better.

I keep reading around the subject but find that the examples given in most textbooks make the assumption that someone will engage to some extent. To give you an idea, our current CPN says that in all his 30 years in this kind of work, he had never met anyone who has engaged as little as our son! So nothing in the mainstream textbooks helps. The anti-psychiatry books (which also abound!) seem to convey the impression that the distress (rather than "mental illness") will resolve with the correct support or that it's possible to love someone through it. So far this hasn't proved possible either.

At my wits' end.

[Fiona_1508]

My heart goes out to you. My son's illness is similar, at an earlier stage but not nearly as difficult to deal with.

I would first like to echo what MrsAverage has said - that the mental health system is not good and many people are being ill served by it. And I would agree with you that medicine is not very good at dealing with mental health either.

Secondly, I don't know if your son is violent or suicidal - but I have learnt that those are the things that galvanize the services into action. If you report such things - and don't stint on them - they will move fast because they don't want to be liable.

Thirdly, I am no expert but did your son take and continue with the anti-psychotics? They need time (years?) to work. And even then they aren't magic. My son is 6 months into his and they have made a difference but I have been told by a good trustworthy private psychiatrist that it is too early to tell what the end result will be. I also have read that there is one anti-psychotic that is used when psychosis is "treatment resistant" - maybe its called clozapine??

Lastly, I have read and a couple of people have said to me that things tend to calm down as people grow up. Twenty-one is a pretty wild age anyway. That may seem like far off consolation at this stage. But I thought I would mention it.

I dont know how helpful any of the above is. Sometimes I feel like the best advice for parents with children like ours is a glass or two of wine in the evenings and lots of easy watching on Netflix.

[Treehugger63]

Thank you for your kind thoughts, Fiona. Wine plus a good film is definitely one of my favourite pick-me-ups.

On the subject of meds, I'm not sure whether our son was on these for long enough, inthe light of what you've said. Risperidone basically made his legs give way from underneath him so was continued for only 3-4 days. He was on Olanzapine, in increasing doses, for maybe 5 months but gained a load of weight and didn't notice any benefits. And he was on Aripiprazole, again in increasing doses, for around a year with little benefit. In fact he kept pressing for the dose to be reduced because he though it was damaging his own "energetic" attempts to heal and, given that he supposedly has capacity, we simply supported him in that. He's absolutely opposed to taking Clozapine - again the thougth of weight gain is offputting and he's afraid of needles/blood tests. The main reason, though is the interference with is own energy systems.

There is, and this is just as far as we can tell because he hardly speaks to us, no suicidality or risk of violance. In fact, I'd say that all of his efforts go in the opposite direction. He is actually trying to make himself well by cleansing himself of "negative energy" that he sees as having built up following some negative events (which we assume to be bullying) in the last year of secondary school. So all the rituals, pacing, fasting, walking vast distances. withdrawing from others etc to him serve a positive purpose.

I am actually hoping that he will, in whatever bizarre or misguided way, be able to work his way through his troubles. But it's been years now and what if the "troubles" are in fact a genetic illness? I'm afraid I just can't tell where one leaves off and the other begins.

I do also wonder about the possiblity of this distress just burning itself our over time. The CPN has actually suggested that discharging him and allowing him to find his own way might be beneficial. I also worry, though, that this could simply allow the "duration of untreated psychosis" to continue indefinitely. And, although i read extensively, I can't find much evidence of recoveries simply occurring, given enough support and enough time. I feel instinctively that this is the way to go, but I feel very uncertain and afraid that we could be making a big mistake with dire consequences for the future.

[Fiona_1508]

No, that sounds like you have given the anti-psychotics a good go. There are others I think - and of course clozapine - but your son is unwilling to engage so I guess that isn't really an option.

If you could afford it and your son would be willing, a consultation with a good private psychiatrist might help you to think about what might help your son. Because you are paying, I have found that they don't fob you off and do tell you what they think in a way that feels more open and helpful than their NHS equivalents. (Not criticising here, just feel that NHS professional are more limited in what they can say). It is expensive but as a one off cost it might be worth it? xxx