Mental capacity?

[Treehugger63]

Thanks Fiona, It's affordable but then, let's face it, I'd actually remortgage the house to get my son's health back so that wouldn't be a sticking point. The problem, now that our son's relationship with services, never good, has become virtually non existant, would be in getting him to engage. To be honest, we have a problem getting him to engage with us in the home to any extent and we're the people who are closest to him!

I just really don't know what people can do when someone is above the line in terms of mental capacity, but still obviously has severe problems that affect everything. Perhaps if there was a MH specialist who would see us and suggest ways of developing insight or improving engagement, we could get back on our feet again, but I'm not hopeful. Sorry to sound so despondent. Has anyone else here tried this?

I suppose my question is impossible, really, because in essence I am wanting to change someone, or change their mind, and, given that they have capacity, that is their prerogative. It does also feel, though, that as parents, our rights are non existent, whilst the need to provide understanding and support stretches out endlessly. Which is not to say that we'd ever stop doing it, it's just that our morale runs very low when there are apparently no results. I feel as though we are simply marking time until either our son changes or until science comes up with more solutions...

Even the consultant is saying, "I'm sorry but..."

[MrsAverage]

It does also feel, though, that as parents, our rights are non existent, whilst the need to provide understanding and support stretches out endlessly. Which is not to say that we'd ever stop doing it, it's just that our morale runs very low when there are apparently no results. I feel as though we are simply marking time until either our son changes or until science comes up with more solutions...

Even the consultant is saying, "I'm sorry but..."

If you replace the word carers for parents, this applies to those with dementia, alcoholism, permanent disabilities and even old age too. The hardest part is recognising that as much as one cares, there is next to nothing one can do to mend things except to carry on caring.
I only say this as sometimes recognising that we cannot change things allieviates some of the stress.
Hope this helps a little
MrsA

[Treehugger63]

I suppose I have very mixed and conflicted feelings when it comes to acceptance, which to me seems to be a state which fluctuates rather then a destination or stage. Rationally I can see that this is just another shade of human suffering and that, within that, there are aspects of the carer's role that hold true, irrespective of the diagnostic label and the type of relationship. Emotionally, though, I am led in a different direction and there are specifics factors that, I think, are exacerbating things. The ones that come to mind most readily are:-

- the nature of the pre-existing relationship (good, bad, close, distant etc)
- the family relationship and the expected position in the family
- the background in terms of other complicating factors (often more types of human suffering and including the psychological background)
- the quality and reliability of information from professionals
- other support systems that may or may not be in place
- the history of the situation

As these apply in my own situation, the thing that leaps out is that, irrespective of diagnosis or prognosis, I find it much more comfortable psychologically to be a carer for my elderly mum than for my son. This is no doubt to do with roles and expectations, and the hopes that accompany each stage of life. My mother has had a long and varied life, work, relationships, children, grandchildren, whereas my son was on the cusp of adulthood when everything was taken away. This means that I find my mother's situation sad, but my son's tragic. It represents a loss of hopes and dreams, the potential for which, at the age of 21, is great.

Other complications include a history of mental illness in the family which means that there are things that I left behind in childhood, lived through over a number of formative years, and never thought I'd have to face again. Psychologically I am wondering why I'm back here again, in spite of all my efforts. I am also confronted with the genetic aspects of this situation. This adds to my sense of powerlessness and also creates a new sense of futility. If genes are destiny, then I find my motivation is sapped. It is only when I consider non genetic reasons and link these to ways of recovering my son's mental health that I find it bounces back.

My own physical illness is another compounding factor, as it leaves me with little energy and this will probably get worse. This means I feel a sense of urgency to get my son well before it does. The fact that my illness is genetic as well as progressive reinforces the "genes are destiny" line of reasoning that weighs me down.

Lessor factors include the inability of services to help or even advise plus a lack of support elsewhere in the family, again due to illness and misfortune (e.g. my husband has severe depression, my sister is a widow...)

I feel awful, I really do, and I hope I don't offend anyone by what seems to be a crude attempt to distinguish between different types of suffering and caring. I know that for others it will be different again and other factors will come to the fore. When I feel I cannot change things I do feel that I am, in one sense, simply joining the rest of humankind and in that way there is some comfort. But in another, I feel that hope is so very much reduced that it sometimes feels pointless to continue. I think I am coming up against my own ideas of what makes life worth living as I age and my illness progresses. These ideas included watching my son go out and enjoy his life plus, of course, the possibility of grandchildren.

I will be going for psychotherapy as & when I get to the top of the waiting list & I think I'll probably go into all of these thoughts in much greater depth. I feel angry and resentful though as, to an extent, I am going to psychotherapy because he won't.

[Treehugger63]

The thought of my son being discharged from the early intervention service is quite troubling to me as, even though they've not been able to change things so far, I feel that this will be a break in the continuity he needs, that there will be no further help given without jumping through hoops to get another referral and also that we will be left unsupported for the forseeable future.

Is there anything that can be done to to prevent this happening? Anything I could/should put in writing and any part of the NICE guidance that would be helpful here?

We have an appointment on Monday which I think is going to be our last but this just feels all wrong.

[Fiona_1508]

Of course its wrong. But the NHS is just so under-resourced that everything is time limited. It's unhelpful, it's short-sighted but...

I have found that there is sometimes some flexibility with some things. So it may be worth pleading.

But surely you wont be left in the lurch? They must refer you on to something, surely...

[Treehugger63]

I think the problem is that it would be our son who would be referred on and that, if asked, he'll say he'd prefer to just be discharged. Legally, their decision will be justifiable as he is deemed to have mental capacity. But what that means for an individual and family still in considerable distress is a complete lack of support. I will go armed with what is now quite a long query list and be prepared to follow up with a letter summarising all my concerns. If this doesn't get any results, though, I might have to just resign myself. I honestly don't know what people are meant to do.

[Debra_16011]

I feel for you as this is exactly what happened with my son. He asked to be discharged from early intervention and was deemed to have capacity so I felt helpless. We were basically left with a psychiatrist appt once every 3 months and a phone number for the crisis Team. The good news is that after numerous visits to a/e and calls to the crisis Team his psychiatrist has referred him to the community mental health team who come to see him at home and so far he is engaging with them . I dread him saying he doesn't need them tho as there seems to be precious little I can do. I would say to his Dr's that you need support it's not good enough to expect you to pick up the pieces when things fall apart. I have found my local rethink support group invaluable I don't know if there is one in your area . Be good to yourself and relish the good times

[Fiona_1508]

I also remember somebody saying to me that if you say you really cant cope, then they have to do something. Don't know if it is true but it might be worth trying.

In my experience, they do nothing, nothing, nothing until a trigger point is reached (danger to self or others - though even then there has to be a certain level of danger before they will act).

It may be that you saying you cant cope is a trigger???

[MrsAverage]

http://www.theguardian.com/society/2016 ... WEML6619I2

Definitely not alone in this predicament, unfortunately

[Treehugger63]

Hmm... I just went to what has turned out to be my last appointment with the psychiatrist. It was basically to let me know that my son will be being discharged but she just wanted to give me the opportunity to ask any questions or give any new information first. My son will have one last appointment with her, just to wind things up.

She has basically insisted that what he has experienced has been a transient psychotic episode from which he has now recovered and that they've been unable to find any evidence of mental illness. It may be, of course, that my son refers to "negative energy," paces a lot, withdraws, won't wash or clean his teeth and sleeps on the bathroom floor rather than in a bed, but these, she says, are evidence of Asperger's. She says that he has a condition rather than an illness and that she needs to discharge him because the early intervention team is no longer appropriate. Moreover, as my son won't attend any assessments or appointments with the Autism team, there is nothign they can do either. Even if he did attend for assessment, there is nothing they'd be able to do on top of that as there is no ongoing autism service after assessment. And, even if he seems depressed or anxious (possibly driving some of his behaviours) the team that helps with mood disorders only accepts the direst cases and there's no chance that they will see him, even assuming he'd engage.

So, as well as now wondering whether i'm posting on the wrong board here, I'm completely stumped as to what to do. Our lives are dominated by all of this and yet, it seems, there is nowhere to turn. I don't even know how to relate to my own son. He's just walked past me shielding his face from me and moving quickly to get something out of the kitchen. Under normal circumstances, I'd have simply asked him whether he was OK but, if I do that he gives monosyllabic answers and continues to hurry away as if I'm detaining him in a place that is dangerous for him. I can't make sense of our situation at all.