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moving into residential care (cold feet!) - Carers UK Forum

moving into residential care (cold feet!)

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We have a 26 year old son with severe learning difficulties, autism and challenging behaviour.Last year he spent a month in respite care. We were at the end of our tether coping with his behaviours and despite contacting health and social services for help and advice we were just left to get on with it. We have tried all sorts of various care packages,day centres etc but his behaviour has always led to them failing him.
He seemed to enjoy his time at the group home and we were offered a permanent placement. We accepted and now they have given us a date for him to move in. He is now much more settled at home and we are once again unsure if we are doing the right thing for him. I know we cant go on for ever but just the thought of letting him (although the placement is only a few miles away) go is just so hard.
Hi Daisy

Yes, I can understand your dilemma and reluctance to let him go. I think you maybe should consider what would be best for everyone concerned. Not only your son but also you and the rest of your family. If your son enjoyed his time in the group home, there is no obvious reason he shouldn't enjoy being there permanently.
It's a very difficult decision to make concerning someone you love.
His quality of life would be assured in the home were he to go there. But what about your quality of life were he not to go? You have said that at times you have been at the end of your tether coping. How soon would it be before you reached the end of your tether again and would you be able to cope in time to come.
If you were not to accept this place you presumably would lose it. If you took the offer up though, there would be nothing preventing you from changing your mind further down the line and getting him back home.
Best wishes.
I have a friend call Max who has autism, his mum was so worried that he wouldn't like it, his dad said give it a go he can always come home again, but he loved it, there was so much to do, he is always look after has something to do, he come homes for weekends sometimes but he can't wait to get back there, Max has been they for 2 years now so i don,t see him quite so much, but he hasn't got enough time to tell me what he's been doing, he does it in his own way with arms everywhere and showing me how he's done it, but i get the gist, hope this has helped but just give it a go just for your sake, and he's only down the road so its not a million miles away you can always go and see him when ever you like. so really it like him staying with a friend. Image
Hello Daisy

I have a 21 year old daughter with mild learning difficulties, severe/challenging behavioural problems and a condition called Prader-Willi Syndrome. She is an insulin dependent diabetic, needs jabs 4 times daily and a load of other meds.

We too were at the end of our rope last year. Daughter had been excluded from college, because she "only" had mild learning difficulties she wasn't considered a candidate for any activities in our borough, the only thing suggested was voluntary work or college.

I won't go into lots of detail here (if you have time you can go through my old posts!) but we knew we couldn't go on any more. Caree didn't want to be here, she could not be independent because of her condition, she was aggressive both verbally and physically day and night and was also becoming very ill. We also had to completely restrict her access to food (padlocked fridges and cupboards) because the syndrome causes insatiable constant hunger-she has tried to eat frozen meat before now.

So-we really were on the edge, having to cope with all this while in poor health ourselves and knowing that without a doubt, there was no supported living set up that was suitable for her.

She was awarded a placement at a specialist residential care home, for those with her syndrome. She lasted 7 weeks there as they were unable to cope with her behaviours. She has been in a private hospital ever since for those with learning difficulties and challenging behaviour.

Sounds depressing? It was but only because it was the collapse of our dreams, of what we wanted for her. What I can tell you is that our quality of life from the moment she left has improved beyond belief. The luxury of not having to constantly be "on duty", to be able to go and take a shower and brush my teeth without having just that 10 mins to myself because World War 3 had broken out in my living room-priceless. I am in the process of thinking about future work but this has been put on hold because my mum became very ill but I now have the choice.

If your lad enjoyed himself, was calmer then that's great. Daisy, contrary to what some people would have us believe community care "packages" and supported living options are not for everyone. Your son has severe LD, my daughter has mild LD but both of them have something in common..community care is not working for them at the moment. I emphasise moment because we never know for sure what lies ahead, perhaps in time your son will be able to move elsewhere but that should be his call. If you know he is happy by his actions or behaviour then you have done the right thing.

I know it's hard but please don't try and think of it as you "letting him go". With your acceptance of his need for more than you can give him, you are giving him your permission to let go of his present life and move onto a new chapter. We can never know exactly what our children need because as much as we know them, we don't know them when they are away from us..it's a different ball game. But they will communicate their pleasure (or displeasure!) and those that look after them will get to know what the little foibles are-with your input of course.

Don't be guilty and try not to be to sad. You have done the most wonderful thing for him and given him the ticket to a new way of life. You have also done the same for yourselves and that takes courage. When your lad moves on, you will be able to do so much..a cup of coffee at a cafe, a cinema trip, just going to the shops without one eye on the clock. I hope you can see that you have earned the right to enjoy YOUR new life too? Without guilt? I hope so.

I mentioned my daughter was still in the hospital. She is indeed and her behaviour reached an all time low last November, so much so that this secure unit were struggling to deal with her! But somewhere between then and Christmas, something clicked in that mind of hers. She has improved beyond all hope, the staff who wanted her out last year now want her to stay and she herself told me last week "I want to stay here mum". Again some people might disapprove but franky I couldn't give a damn. My girl has got the chance to go through the very worse she could be without being sent away. She is gradually learning how to be a thoughtful young woman who is working out how to react to her own problems in a calm way (we now know she has psychotic episodes), she does Yoga, art work, helps out on the unit with serving food to the others and generally looks a different person. She has had the opportunity to grow in a place where she feels safe and can do this at her own pace. Her health has improved tenfold and she is behaving like a "normal" teenager! She rang me last weel to inform me she had dyed her hair-AFTER the event! It looks lovely actually Image

I'm sure your lad will grown in his own way too. You have made the right decision for all of you.

You all deserve it. Good luck and keep us posted. Image xx

PS. This was going to be a short post and then I waffled. What I was trying to get across is that whenever we believe that doors are firmly closed, there are no other options, something turns up. We just have to be willing to give it a go.
Hi there Daisey,
I can only imagine what a difficult decision it is for your family. In my "previous life"' ie when I was married before, my sister in law was downs syndrome. M was a very friendly, loving person when I first met her but over the years as her brother and sisters left home, her personality changed considerably. M became anorexic/bullemic and her behaviour was very difficult for my elderly ex parents in law to cope with. They took the decision that should anything happen to them, they did not want any of us to become carers...right or wrong, in their eyes they believed it was unfair.

Many years were then spent trying out various recommended homes for M. She spent the odd weekend there etc. Eventually a home was found that seemed very suitable but there was still reluctance to "let her go". Sadly, many issues forced the decision...M was refusing to eat and at one point her weight had dropped to below 5 stone and despite hospitalisation it was touch and go for a while. She became violent and the dining room was made into a room where she could let off steam without hurting herself (I remember the goldfish not impressed as their large tank was pushed to the floor and I saw them jumping up and down as my father in law tried mopping up the water!)

When my father in law passed away suddenly the decision was really taken away because my mil who had severe arthritis could not cope alone with M. It is now 20 years since M has lived in this home and although I no longer see her often ask my daughter how she is doing and I am so pleased that all is well. When I was still able to visit up to 10 years ago, M was very happy in her own way and it was obvious that she considered this very much her home. In fact when we went, her first words were always, " did you bring me a present" and once we handed over the goodies, she was gone!

Letting go is hard, but sometimes there are times when we just have to "let go". It certainly doesn't mean that we care any the less, it just means that we have to do what is best for everyone.

Daisey, I do feel for you all.

Bell x
I would worry if you did not have some doubts. This is a big step for all of you. But I think you know this is probably the right thing to do. And sometimes you have to think long term. In a way, you are lucky to have a found a residential place that your son seems happy with and without all the troubles you have found elsewhere. Sounds like an opportunity to grasp, but I understand how you feel. A big step. Seeing your son settled and happy will be some comfort.

Hope it goes well for you all.

Everyone else has said all i could say.I wish you luck with you`re decision,but,as Robert said,you probably already know the right thing to do for all of you.Best wishes. Image Image Image
Thank you all so much for your kind thoughts and good wishes.
Best of luck Daisy Image
Hi Daisy,

I have read your post and all the replies. At some point in the future, S and I will be facing this too.

I think you are lucky that you have found a residential home where you son spent a happy month -that bodes well. Places in good care homes for those with LD don't come up often as once settled residents tend to stay many years - so I think you would be daft not to take the place.

I totally understand all your reservations and my heart goes out to you.

Please keep us updated.