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Guilt, stress and doubting myself ... - Carers UK Forum

Guilt, stress and doubting myself ...

Share information, support and advice on all aspects of caring.
Hello everyone,

Well I'm new here and have spent the last few days reading obsessively - I feel I know some of you a little, already.

I'm not new to caring, though. My son is 30 and has cerebral palsy, partial sight, dyspraxia and communication difficulties.

He was in various forms of residential education till 22, (home in the hols) then was housed by a charity with minimal support near his last college. It didn't go well and we upped sticks and moved across the country to be nearer to him.

18 months ago he moved into a bedsit and things have been going steadily downhill. Finally I told his support worker (who saw him once a fortnight and did nothing as far as I could see) that I could no longer cope with being his sole source of support in every way.

Things are moving, and there is now an effort to get him advocacy under way. He does have a new support worker who seems quite proactive but I still see myself having to manage the situation and do lots more work.

The thing is, I feel both incredibly guilty for not seeing how badly he was coping, and angry with the "professionals" who were seeing the same thing and saying that he was fine! The definition of fine seems to be "still alive" as far as I can see. I feel conned basically, but also so bad that I let things get to this point.

The first 22 years of his life I did fight hard. Getting the appropriate educational provision was a nightmare. In fact even getting a diagnosis for him initially took six years, I think because they were scared of us suing - they "lost" all the notes relating to his disastrous birth. Our only contact with social services was with a social worker who did everything she could to prevent him going to the specialist FE college he finally attended, that everyone else involved thought was ideal for him.

Now I just don't feel I can go on, but to get him from where he is to where he and we would like him to be (there is a lovely care home in his town, full of young people with similar conditions) is I imagine going to involve months more fighting.

I have both mental and physical health problems myself (briefly, anxiety, chronic fatigue and recently a bad back). I keep telling myself that one more big effort will get things sorted out for good, but I'm not really convincing myself!

Anyway sorry to rant/moan, any thoughts or advice would be much appreciated.
I am so sorry things are so difficult. No advice, sorry for that too.
But just wanted to say I am still listening. For wots its worth.
Hi Crocheteuse
Im afraid I havent any practical advice as my caree isnt in that position, but I wanted to welcome you to the forum and say, please please dont feel guilty about what has happened - it is not your fault. It is good that you know where you want him to be.
I know there are others on the forum in a similar caring position.
Just wanted to say hi and say I've got some idea where you're coming from.

My son is 24 and although has different needs to yours, we seem to have spent our lives fighting for him. Last year, he left college and we were near breaking point dealing with the powers that be to agree on a suitable placement.

He is now happily settled in a small residential care setting with other residents with similar needs. Unfortunately it is 1.5 hours drive away from us but there just wasn't anything near to us that we felt was suitable. The authorities seem to have an obsession with placing people locally, to our view even if there are no appropriate places. However, we felt it much more important to get the right placement, not the closest one and at the last minute they agreed with us. However, they are very keen on "repatriation" and we are always worried that they may wish to move him just to suit their ideologies.

Our experience so far also suggests that, as far as the authorities are concerned, residential care=bad, "independent living"=good. Although they are forever saying everyone should have "choice", that often does not seem to include the choice of residential care. In my son's case, residential care is a much more suitable option and, I am sure, must be cheaper for the authorities. Everyone is different and what is right for one person is not necessarily right for another. An advocate could be helpful - my son has had one in the past.

We have certainly gone through the "Guilt, stress and doubting myself..." and although we are currently in a happy and stable situation, I don't think these feelings ever go away. However, we are glad we fought for our son, and we know we were right.

Sorry I can't offer any useful suggestions, but just want you to know that you're not alone and that there can be light at the end of the tunnel.
Thank you all Image

And ellcee, that is very reassuring and comforting, thank you very much. It sounds like quite a similar position to ours and it's good to know you had such a satisfactory outcome.

My impression is "residential = bad because expensive" and "independent = good because cheap(er)". I have read that it is government policy to promote independent living and so I think local councils have a duty to try and arrange this. As it also conveniently saves them money they have every incentive to do so.

It reminds me of all the weasel words from Ian Duncan Smith and co. about how all these poor disabled people are being deprived of their rights to a job - what job - hasn't he noticed how many unemployed non-disabled people there are in this country!!!!! Still it's a great excuse to kick people off their benefits and stick them on job seeker's allowance at a considerable saving to the public purse.

Oh dear I'm ranting again - sorry!!
Let us never, ever forget the bald, brutal truth of Yes Minister.

Jim Hacker (dismayed and outraged): But you can't simply throw disabled people out on to the streets, Sir Humphrey!

Sir Humphrey (sublimely unmoved as only a civil servant can be): You can if you call it Care in the Community, Minister....

It's as shamefully true now, as it was then.

I would agree that 'residential care = bad (because expensive)' and that maybe they want to keep carees 'local' because they are hoping their families will take them back in (!) and save the local authority money that they can then spend on housing immigrants, paying mothers to breastfeed, removing leaky silicone from the inflated breasts of Essex girls, sending councillors on fact finding tours of the Caribbean blah blah blah all the RUBBISH that our taxes are wasted on!

All the very best to you, and for your son, and I do hope that, as you say, with one last 'big push' you force the authorities to take him into the care home you want him to be in and that will do him the best.

(Sometimes I get the feeling we are still living in the Elizabethan Age, when all the 'beggars and vagrants' - in other words, the 'poor' - were simply whipped from village to village so that 'someone else' could look after them.....)

Our experience so far also suggests that, as far as the authorities are concerned, residential care=bad, "independent living"=good.
Political ideologies are always grossly oversimplified. Neither residential care nor 'care in the community' is the "right" answer. Either can be excellent]http://www.carersuk.org/images/icon_sad.gif[/img]

Tristesa
My son is 34, with SLD, also due to a botched delivery. When he was in residential care I had a life of my own, time to look after myself, even run a national club. Then in 2006 he moved into "Suppported" Living, and there have been problems ever since. The first carers ended up being investigated by the Independent Living Fund Fraud Officer - they ignored all he had said and later sued M. for £10,000 he didn't owe. Fortunately, I could prove this. Then he moved to a second care provider - they ended up being investigated by the Ombudsman. Then he moved to a third care provider, with awards, a manager with a Business Studies degree (like me) so I was confident that all was sorted. Now things seem to be in a bigger mess than ever before! I told SSD that if this fell through then as far as I was concerned, residential care was the only solution, not that I want it, M. has a lovely flat, lives alone, it's tidier than my place, but the care staff can't add up and supported him to massively overspend, so he had £150 worth of bank charges in a six week period. I have health problems of my own, and an elderly disabled mum to keep an eye on too. Now I've given up everything that every mattered to me, to sort out their combined constant problems. I'm just so weary of it all.
Thank you again kind people Image

Jenny I did love "removing leaky silicone from the inflated breasts of Essex girls", no offence to Essex girls but that made me LOL which always helps!

bowlingbun, I'm so sorry - I have a frail and elderly mother too but fortunately she lives far away and near her sister. I can't imagine the strain involved in caring for two people at once. Actually I have guilt issues here as well but those are certainly much better than having to do the caring for her. Edit - sorry that probably sounds awful but she has not been a good mother or grandmother and at a survival level I put my son's needs above hers.

I've been motivated since reading all your comments to finish a letter to my son's GP asking for his support - it's all about one step at a time I suppose. At least, if I can manage two steps forward and one back we'll get there eventually.
Unfortunately there is no single "one size fits all solution" . 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. And smaller group homes are like student shared houses, endless arguments about chores, and frequent incompatibilities and rows between residents. Some form of supported living - where people have their own flat with access to staff when needed, seems to tick most boxes. And maintaining links with your own community is very important, people shouldn't be sent away from the everyday links they have with family, neighbours, shopkeepers school chums and so on, we need good services in every location. So why not centre the service around the individual, using ordinary (or adapted) local housing?