[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Guilt, stress and doubting myself ... - Page 2 - Carers UK Forum

Guilt, stress and doubting myself ...

Share information, support and advice on all aspects of caring.
Scally, all I can say is that doesn't sound anything like my son - and surely there is no shortage of disabled people who in fact are not integrated in their communities and can't cope with the degree of autonomy required to live independently, even with support?

Of course anyone who wants to, and can, live as part of the community should be supported to do so. The problem comes when the government decides this is best for virtually everyone. At least in my son's case this leads to severe social isolation (apart from his family there is hardly anything) and a general inability to cope with the complexities of modern life, and I feel he would be better with a group of other youngish residents living together - and this is what he wants too. Nobody is suggesting "sending him away" and he has no links locally anyway, apart from with his family who can see him just as easily as before. But achieving this solution for him is what seems to be very difficult.

I completely agree with you that there is no one size fits all approach and nobody wants to go back to the days of everyone with a disability being shoved into a care home regardless, but perhaps the pendulum has swung too far the other way?
It's now tomorrow morning and I'm here again - there was a lot of food for thought in Scally's post which has raised many questions for me about residential care. If anyone has any relevant experience I would be VERY grateful to hear your thoughts as it's clearly a HUGE step for my son to be (potentially) going into residential care.

This bit particularly disturbs me -

"But, the evidence tends to show that most people with disabilities are not that different from anyone else: they prefer to have some degree of autonomy and privacy in their home, they need to have a say in which supporters care for them, they need help with finance and social matters, and they need to be given a meaningful purpose in life and be valued, included, and present in everyday society.

Care homes - not even the very best - don't usually do that."

Don't they? The care home we are looking at is at pains to stress that they see each resident as an individual, that they try hard to individualise care and promote activities that are tailored to each person - and there seems to be good evidence for this. Privacy will certainly be more of an issue for my son than when he is in his flat alone and can stay there for days at a time without seeing anyone if he chooses - but I did notice a firm rule about knocking on bedroom doors and asking permission from the resident before we were shown bedrooms.

I suppose the carers are a given, whereas if you don't like the one you have at home you can change them. On the other hand, a vulnerable person living alone is much more at risk from a rogue carer than one in a home where there are checks, I would have thought - unless there is a culture of abuse in the home, but I'm positive that isn't the case here. My son needs relatively low-level physical care and is quite capable of telling us if he doesn't like what's happening so do I need to be worried about this?

By the way I read the CQC report on the home and it is all green ticks and seems very positive.

As to finance it will basically be taken care of as I understand and my son will have an allowance of about £23 weekly which will stop the current situation where he spends all his money at the beginning of the month on alcohol and computer games and then we have to bail him out for food and electricity.

But this is the bit that most got to me -

"and be valued, included, and present in everyday society."

How many disabled people experience that? Am I missing something here? One of the main points of this move is to give my son a social group!! Sure, he won't get on with everyone but he already knows someone there that he had a good relationship with at college - and who he hasn't seen for eight years! Basically the client group are mostly young men like him, many have CP and although mostly they have greater care needs than him, he is used to that from school and college.

They are into sport, especially football - they go and see the local (division 1) team every week - my son would love that! He went on his own to see them play a couple of times years ago and then stopped, I'm guessing because of negative behaviour from fans though he's never said so. They go to the college that he and some of the others previously attended, every week, for swimming and drama. They have a take-away curry on Saturday nights. When we looked round it was a resident's birthday and they were setting up a disco for the evening, including a set of decks that one of the residents was going to operate. They have barbecues in the summer. Residents are supported to have a week's holiday every year - my son hasn't had more than a couple of nights away with family members for five years. Etc.

Surely this has to be better than his current living situation, which is isolated, lonely and unstructured? DH and I have done our best to support him, though it's made more difficult by us living 25 miles away - we have done all his housework, attended to things like cutting his nails, bought his clothes, looked after his finances as best we can, arranged doctor's appointments, seen him every week and had him to stay often and spoken on the phone half a dozen or more times a day - but nobody else has "valued and included" him and I can't see how that would happen if he stays where he is ... or am I missing something? The best his key workers have come up with is directing him to activities for people with learning disabilities which while perfect for them are inappropriate for my son, who is not interested in puppet shows and face-painting.

Sorry this is so long. As before, please comment if you have anything at all relevant to say. I feel we are taking a great leap into the unknown and don't want to do it with our eyes shut to possible downsides - but on the other hand don't want to be put off the right solution by non-existent problems!
My son went into a wonderful care home, everything we could wish for, absolute perfection. Then the government introduced new rules about the qualifications of managers, they couldn't meet them, the place was sold, and it all went downhill very fast. I spent lots of money making the bedroom M. was in really homely, as it was to be his "forever" bedroom. I made lovely lined, long curtains for the windows, bought all sorts of things - then the new manager moved him to the smaller care home without even telling us or social services. One of the staff said they were "thinking of chopping the curtains off" but waited till I came home from holiday! Now M. lives alone in a privately rented flat. He loves having his own stuff around him knowing that no one else can touch or spoil it, and that is important to him. He is socially isolated in the evenings, but does lovely things during the day, three different day service providers. I wish he did more exciting things some times, he grew up taking a steam roller to a steam rally every weekend, but most people don't. There is no perfect solution.
Sorry, no direct experience of this but .... Well, this might be weak but I assure you it is from my heart, if that counts. I say simply ....trust your instincts.
How many hours support does he get a week? The real problem could be that your son isn't given enough hours. My son, less disabled than yours, gets five days of day service, four hours of care when he gets home, and about 9 hours every Saturday and Sunday. I don't do any shopping/cooking/cleaning. Staff should be managing his day to day spending, and if they are not doing the job properly look up Finacare on Google. They are now appointed by our County Council to monitor M's care providers management of M's spending. Wonderful people, but then one of the people who runs the company has a relative with LD, which makes all the difference.
Bowlingbun, how awful that your son seemed settled for life and then had that taken away Image I'm glad he seems to be getting so much care and support but it's not the same for you, or him, of course.

The answer to how much care my son is getting is - none. His very proactive new support worker has just rung me - he is really getting on with sorting things out. He has been taking photos of the flat as it's so awful, to use as evidence, and is going to the advocacy service this afternoon. He is clearly very shocked that my son is living like this. Seeing it through his eyes I am also shocked and ashamed that I've let it get this bad - but then again what were the "professionals" who were supposed to be keeping an eye on him thinking?

Dancedintherain - thank you. So simple but so right Image
What were the professionals doing? There's an easy answer to this, find out! I made a "Subject Access Request" to my local authority, after I'd had a lot of problems, so that I could see exactly what they had written about me. As your son has LD, I think they should allow you to see their records. I'd ask and see what their response is. In particular, check if you son has had a formal "Mental Capacity Assessment". If he does not have "capacity" then he should have someone else, an "appointee" to handle his benefits, usually a parent. Has anyone discussed this with you? As a vulnerable adult, the local authority should be protecting him from harm. It might be worth you finding out more about "Adult Protection". Don't try all of this at once though, decide what is most important and deal with that first.
Sorry I haven't got time to write more now, but my son is far more "valued, included, and present in everyday society" in his residential care setting than he could ever be in a supported living situation. He lives with a small group of similar people with high care needs and they are out and about all the time, with activities to suit individual choices. Sometimes they go out together, other times in ones or twos, with support. They are well known and accepted in the local community. If they don't want to access opportunities offered, then that is respected too (though in my son's case, he likes to be out and about as much as possible - swimming, shopping, church, art group, walking in the park, library, cinema etc...., or just popping round to another house for a cup of tea)

It's different for everyone - supported living can be excellent for some people, with suitable and adequate support, but for others, the minority, the right care home is the better option.
Sorry I haven't got time to write more now, but my son is far more "valued, included, and present in everyday society" in his residential care setting than he could ever be in a supported living situation. He lives with a small group of similar people with high care needs and they are out and about all the time, with activities to suit individual choices. Sometimes they go out together, other times in ones or twos, with support. They are well known and accepted in the local community. If they don't want to access opportunities offered, then that is respected too (though in my son's case, he likes to be out and about as much as possible - swimming, shopping, church, art group, walking in the park, library, cinema etc...., or just popping round to another house for a cup of tea)

It's different for everyone - supported living can be excellent for some people, with suitable and adequate support, but for others, the minority, the right care home is the better option.
Thank you so much, that's just what I wanted to hear Image My impression of the care home we are hoping for, is just like this. The residents seem happy, well cared for, active and integrated in their own small community - but also somewhat in the wider world as well.

My son's new, very proactive support worker is kicking up a storm and we have an assessment meeting with the advocacy service, two days after he requested it, this very afternoon - with social services I gather it could have taken months!! In fact the social worker he spoke to suggested the advocacy route as the best way to speed things up. What sort of system is it where SS are telling people to go to other services to get what they, SS, should be providing Image