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Carers UK Forum • Not sure what to do and feeling Guilty
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Not sure what to do and feeling Guilty

Posted: Thu Aug 11, 2022 8:10 pm
by Paul Webb
hi all
its been about 4 years since i posted last here. My wife and I have a 27 year old son that has S.L.D , autism, behaviour issues and more.
we are getting older now and both approaching 60 . we are finding it harder to cope with his behaviours and its always like walking on egg shells if you know what i mean, we haven't had a 'holiday' for over a decade as he will get very upset if we even go shopping for more than a very short time. tonight we popped into Tesco's and even before we walked into the store he was banging his head for all its worth and everyone was looking a us like we are from a different planet , I'm sure some of you know that feeling.
our life is really just trying to keep him on a level footing, we get day care and that works most days but often they will bring him home early as he is upset and self harming. he doesnt sleep well either and we are often up a few times each night before he gets us up at 5-6 am (doesnt go to sleep till midnight onwards.) we also now get one night a week respite which we tend to spend catching up on jobs around the house we haven't been able to do in the week, i am self employed now and work from home so i can be flexible around our sons needs, my wife is also helping her aging mother with her care needs .
we think we are getting to the point where we need to consider full time residential care for our son and that makes us feel guilty as we love him very much and want the best for him but life at home isnt good and we know that some day we will not be able to care for him.
if we dont start this path now and something happens to one of us he runs the risk of being put in the 1st place they can find, not the best place we can find. what have other done in this situation?

Re: Not sure what to do and feeling Guilty

Posted: Thu Aug 11, 2022 8:18 pm
by sunnydisposition
Have you every considered a respite placement in a Mencap supported housing. They are really good at all types of behaviours. Doing a respite placement get a person ready for moving on full time. It will take a lot of work at the start but perseverance will pay off. I've know many families with much older children then your son. Have gone through this process with very successful outcomes.

Re: Not sure what to do and feeling Guilty

Posted: Thu Aug 11, 2022 8:22 pm
by bowlingbun
Welcome back!

My son was brain damaged at birth, unable to read, write, or do any maths. By the time he was 16 my health was in ruins. 14 courses of antibiotics in 12 months. My GP told Social Services he MUST go into residential care to give me a break. He was a day pupil at a boarding school, so became a boarder, coming home regularly alternate weekends. Then residential college, then a residential care home. He now lives in his own flat with carer support.
It's very sad that you haven't had the support you needed to start this process long ago.
Enlist the help of your GP, have your Carers Assessments updated, and your son's Needs Assessments.
In my area, Health have their own LD Team, with a special team dealing with challenging behaviour.
It is vital that you start the process asap, as things take time.
The sooner you start, the easier it will be to support him through the process, while you are still able.
The aim is to find him a new home before you or your wife have a health crisis of your own.
I'm now widowed, so glad that my son has his own home, as no way could I manage him on my own.
Feel free to send me a PM if there is anything you want to know.

Re: Not sure what to do and feeling Guilty

Posted: Thu Aug 11, 2022 9:06 pm
by Melly1
Hi Paul,

If your real name is the same as your username, I suggest you save it to protect you and your family's identity.

I am very familiar with this sort of behaviour from when S was younger and also as a I used to teach in a special school. The unpredictability keeps you on edge all the time and you are constantly risk assessing when out and planning quick escape routes etc in case it all goes wrong ...

I totally agree with sorting out your son's future now whilst you have the time to get it right. You shouldn't feel guilty you have shown Herculean strength to have kept him at home all this time.

Ask for referral to the learning disability nurses as they will often know of new homes being set up, which providers have the best skill set and also regarding securing CHC funding fully or partially.

There is a helpful guide here about getting a bespoke home and care set up for someone with complex needs https://www.challengingbehaviour.org.uk ... t-a-house/
Its worth looking people with autism often find group living difficult.

Melly1

Re: Not sure what to do and feeling Guilty

Posted: Fri Aug 12, 2022 7:57 am
by Charles_2112
Hi Paul

My wife and I have a 37 year old son with autism. We took the decision that we should organise his move out before we were too old and infirm to carry on, and so he moved out at the age of 25 into a supported living placement. We're still involved with his care and he gets to have a little more control over his life than he might at home. It's a lot less stressful for all of us, and we're still able to fight his corner at the moment, so he's getting the best of both worlds.

Just as well. Four years after he moved out, my wife had a spinal cord injury that left her virtually unable to walk, except a few steps around the house. When that happened, I was able to concentrate all my efforts onto my wife's needs without having to rush between house and hospital to care for my son. It would have put me in hospital. Or worse.

Re: Not sure what to do and feeling Guilty

Posted: Fri Aug 12, 2022 9:42 pm
by thara_22071
Paul Webb wrote:
Thu Aug 11, 2022 8:10 pm
hi all
its been about 4 years since i posted last here. My wife and I have a 27 year old son that has S.L.D , autism, behaviour issues and more.
we are getting older now and both approaching 60 . we are finding it harder to cope with his behaviours and its always like walking on egg shells if you know what i mean, we haven't had a 'holiday' for over a decade as he will get very upset if we even go shopping for more than a very short time. tonight we popped into Tesco's and even before we walked into the store he was banging his head for all its worth and everyone was looking a us like we are from a different planet , I'm sure some of you know that feeling.
our life is really just trying to keep him on a level footing, we get day care and that works most days but often they will bring him home early as he is upset and self harming. he doesnt sleep well either and we are often up a few times each night before he gets us up at 5-6 am (doesnt go to sleep till midnight onwards.) we also now get one night a week respite which we tend to spend catching up on jobs around the house we haven't been able to do in the week, i am self employed now and work from home so i can be flexible around our sons needs, my wife is also helping her aging mother with her care needs .
we think we are getting to the point where we need to consider full time residential care for our son and that makes us feel guilty as we love him very much and want the best for him but life at home isnt good and we know that some day we will not be able to care for him.
if we dont start this path now and something happens to one of us he runs the risk of being put in the 1st place they can find, not the best place we can find. what have other done in this situation?
Perhaps that would help a lot