I am an optimistic person but recently I have felt that the mileage I will get out of my boys who are 20 and 23y is now quite limited .
suddenly I am faced with a bleak outcome as to what prospectus they have and how dependent and slow they are . Do any of you had this experience and how did you handle it ?
Sadly once your loved ones are no longer under children’s services it feels like you’ve fallen off the edge of a cliff. All the services that were actually there suddenly disappear and you’re left with not a lot in all honesty Im sad to say. I feel your pain and believe me you’re not alone. I also think a constant concern we have is what happens when I’m not here or when I get sick who’s going to look after them it’s a constant worry. People need to walk in our shoes to truly understand how hard this really is and if you are doing it on your own it’s even harder. It’s great that you’ve reached out on here. I am waiting for an appointment by the carers health team as I am going through another serious safeguarding regarding my son and his care home I feel totally broken at the moment but I will hopefully get the help I need. You need to speak to your GP and see how they can help or the carers association and see how they can help you. Good luck and I hope your loved ones find things to do as well.
Thank you Jofisher,
Our Gp doesn’t really get involved with social matters just medications . I will approach the carers association to see what advice they can give .
the GP can refer you to the carers health team and other places where you can get support and the carers association can do a carers assessment that what you need to request from them and what other support they can offer you.
I just try to make sure he has the best life possible. We found a lovely place for him to live and seeing the photos and videos I get sent regularly of him out enjoying himself and living life keeps me sane. If he’s happy then I am too.
BenjiB ,
Thank you for your reply . How old is your son now ? Is it supported living accommodation?
Hi he’s 24. No he doesn’t live in supported living but in residential care. He was at residential college from 19-23 on a 38 week placement and moved to a full time residential placement in September when college finished. Took a year to find what we were looking for and could meet his needs but so far so good. He seems very happy there.
Hi BenjiB ,
That sounds good . I am pleased you found somewhere suitable and he’s happy . I plan to check a couple of places for suitability . Some are not good they I have heard and my two are like big babies they will react badly if they don’t like something .
yes my son is the same. He has challenging behaviour and picks up if people are wary of him and runs with it. There have been a few incidents but nothing they can’t handle. We know that boredom brings behaviours so they keep him active and busy. He also responds much better to female staff so they make sure he’s supported by females where possible. I’m informed of incidents but they’re always quick to reassure me that they can deal with it. My friends son moved the same day as my son to another service and it’s not really working out. It’s so hard on her as all the searching and visiting and she thought she’d found the right place.
Very true , its challenging for them.
Hi I think we all want the best life possible for our son’s and daughters but sadly it doesn't work out like that for a lot of people. There is nothing I want more. I know there are good places out there but not always possible for some depending on where you live etc. Good to hear it's all positive for your son and hoping it continues for you just wish there were more places like it and we could all be in a good place. Take care.
I understand totally that feeing, it is so real and never-ending. As I've said previously on posts it's been more difficult since my son went into supported living, nobody listens to you, it's exhausting, nothing ever changes and basically nobody cares. Some people have really good service providers and others like myself have rubbish ones.The LA just pour money into these companies and don't hold them to account!! Your told to look after your own health and well-being but it's virtually impossible due to the stress of caring, more so you having 2 young men to support, not easy at all. As Jo said get an appointment with your GP and be honest, keep pestering Social Care, and get some support from the Carers Centre, that's what they are there for "CARERS" I don't know if you have ever been in touch with your local Carers Centre but they can offer so much. They can support with practical things like attending meetings with professionals, helping you to access the help and support you need for your boys. They hold events with other CARERS including social events for carers. I found it a positive experience as you realise your not alone and the advice you get from other CARERS is invaluable. Our Centre also offered massages at reduced cost which I loved, honestly it's worth going to see what help they can offer you, it really is worth a visit. Unfortunately because my son went into supported living I haven’t used the service in a long time but feel like I need to go back. Take care and good luck.
Hi 49Twister,
I found my local carers Center offered some activities for me but unfortunately I look after the two 24/7 so it’s rarely possible for me to go to their activities. They did an assessment for me but no advice or suggestions for the boys . Sometimes I get so much on my plate I just can’t think what to do the few people who tried to make friends with me have distanced away as I can never go out with them due to my commitments . I am now exploring getting a live in au - pair .
I’ve just seen your reply, I find that really disappointing regarding the carers centre I obviously had a much better experience. It’s like everything though services vary throughout the country. It seems as though you don’t have any other family support, you definitely need some respite and I advise you to seriously pursue that without feeling guilty! I know it’s easier said than done to not feel guilty or a failure as we all do, but you will burn yourself out and end up feeling resentful and angry (which I have) and not much use to your boys. You deserve and are entitled to some kind of life apart from caring. The boys, I’m sure will also get something out of staying elsewhere and they benefit in lots of ways having space from yourself. I looked after my son till he was 41, he’s now 48. Although there are many issues where he is living now and far from perfect I should have done it many years ago when I was younger. Get some respite to start with, do it gradually, one night then increase, and start looking at supported living sooner rather than later. Good luck
Thank you.
that's such an honest post. I think we've all been there. Other responders are right - you need to get support for yourself too; don't put yourself at the bottom of the heap. Difficult but essential.
Can you get any respite care from your LA ? We've had that for some years and although it's not much, it is such a boon to be 'free' for a week or so.
Are your sons able to handle day-care activities ? Once they are 'adult' provision is more fragmented, but they are still entitled to it.
You should start planning for them to leave your care; it will take a while to find a suitable alternative to their comfortable family home with you. It feels like a hard decision but it's essential to have it in place before you are too old to deal with it all.
Try to look after yourself 👍
Thank you oddfish7, yes there is an offer of respite I am going to look into it . I was reluctant first as I didn’t want him to feel that I was abandoning him . I am going to have a look at a few places . He’s got into unhealthy eating habits and refuses to listen so that is one of the reasons as that causes me so much stress .
I understand completely what you are saying , I have been there many times in the last 38yrs , the feeling of helplessness can be overwhelming at times , especially a times of change . I think everyone on here has said everything , i hope you can find a carers centre near you , My area doesnt have one .I am on Carers Uk and various carers websites just to get some empathy or information . I cant say it changes much but you know you are not alone , good luck .
Hi. I agree with what others have said on this - it is a constant worry thinking about our children's future. All we can do is to provide for them as best we can, get in place the best available help and support for them and try to ensure a good future for them, but it is an absolute lottery with regard to local services and provision. You are under so much pressure doing this alone so do please try to look after yourself and seek help from wherever you can find it. That is not selfish - you are preserving yourself so you can continue to look after your boys. Best of luck.
Hi Ruperthebear, I am sorry to hear about how you are feeling and that you are caring for both your sons 24/7 and because of that the few friends you did manage to make drifted away as they obviously didn't understand your situation fully. Don't your sons have a Social worker allocated as they might be able to offer your sons day care services which could give you some much needed respite? What about 1-2-1 support is that not an option for your sons that someone could come for a few hours and engage with your sons and possibly take them out which would also give you some time apart. My apologies if you have already been down this route as I think this could be an option as there must be places around where you live that offers this type of service. The au-pair you mentioned in one of your replies sounds a good idea providing you can get someone which you will have to advertise for and then interview which seems a little daunting but if it works it will be worth it in the end. The 1-2-1 support you would no doubt have to find yourself if your sons don't have a social worker, who could look at Direct payment for funding of the service of either day centres or 1-2-1 support groups again my apologies if you have already tried this. Would your sons be okay with being supported by different people ? This would be a good way of introducing them to new faces etc. I hope you find something soon as you need to have some "ME TIME" as much as your sons need to have sometime away to experience/explore different things with different people. All the best!!
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