Disabled adult son

[Noras]

My son has complex needs including ASD, language and motor disorders all now neatly diagnosed. He is now an adult with poor executive functioning so I have to explore all educational opportunities and training etc. I also have to complete all PIP applications and now an application for universal credit for him. I also have had to argue his case over EHCPS for years. The upshot is that I’ve managed to get him into a good place education wise so that hopefully he can do a foundation degree. He will hopefully get life skills course next year but that is not residential. The question I ask is this. Am I unreasonable to be exhausted now by it all? I have looked after him through my mothers terminal dementia, my father’s terminal cancer - whilst nursing my father. I have fought to train him to talk well ( he could not talk at aged 8/9 just gobby hooked). I trained his motor skills with endless exercises and swimming. I even taught him to read when he was still classed as deaf. My H is fantastic and does so much too. But I’m just tired. I looked at yet another form (universal credit) and my heart sank. In the words of Queen ‘I want to be break free.’ My son needs so much ongoing support with his college work and then I end up the drudge in the house. I have not worked since he was born - he was quite unwell before aged 10. Had I worked he would not have got where he did. I have told him that I have to have my time now, get a job and have some purpose. I’m so old and have not worked professionally that I doubt that anyone would want me. AIBU telling social services that I now need them to step in once my son leave college and get him a PA or proper carer to do everything for him including cutting his finger nails or should I still care? Realistically unless he moved into independent living we would still end up caring so I’m not sure how I will ever have freedom. He struggles to do cleaning ,is scared of a washing machine and can do light washing up but not complicated washing up. etc. Even an evening out needs planning as I have to find someone to act as PA. He’s scared to be left alone at night. We have only just received one evening a week PA finding after 19 years of care. Sometimes I have felt so trapped it’s like being imprisoned. The moment when I have an evening off are like suddenly being able to breathe but then I feel guilt not taking him with us hence have to arrange a PA (I currently use ad hoc people ) an outing for him eg cinema etc.

This sounds so tough op. Hope you're okay. I think you should do whatever feels right for you and your family. I couldn't have done your role, hats off to you.

Carer burnout is a real thing. If you need to give over some responsibility to others, there's nothing wrong with that.

It’s fair to ask for more support, I hope you get it.
You stated that you support his college work, could that be done at college so you don’t have too?

Its not unreasonable to be exhausted. Its exhausting.
It would also be an act of care to start stepping back and try to access independent living for him. This sounds harsh but one day you will die so this next stage is preparing for that whilst you still have some energy. Dont feel guilty about asking for more PA time so you can do other things.

I think you need to be looking at a move for him into supported living. The LA are likely to provide little in the way of support if he lives at home.

We have an autistic child who is much much less impaired than this so YANBU in the slightest. I regularly feel knackered with all the thinking ahead and extra stuff. It is not your fault (or mine) that we live in a country that provides very little help unless you make a right nuisance of yourself or make with the £££.

I agree - everything you do from now should be focused on finding supported living and paid carer help for him. Do stuff for yourself.

Congratulate yourself massively - look what you have achieved - it's amazing!

This. Good luck.

I absolutely agree with this. It is so hard to do, but be realistic. You have done more than your fair contribution already, you are tired, you aren't getting any younger, and you won't be able to look after him to this degree for the rest of his life even if you wanted to. You are doing him a kindness by getting in place the things he needs to live without you whilst you are still able to offer some support if not as much.

And if you want to work once he has moved out, then all your caring skills are much in demand. Carers aren't paid as much as they dserve to be, but right now you are being paid even less! So you could use your skills in a caring role where it is set hours, or retrain in something. Your life isn't over yet, so there are options!

You sound an absolutely amazing parent.

Would you consider getting a job? You would probably enjoy it and you could buy in assistance.

YANBU!!!
Do it. Not only for yourself but do it for him. the reality is you won’t be able to care for him forever. It’s much kinder to plan a gradual retreat from you caring for him to others, than for it to happen in an emergency when you and/or your husband become too elderly or poorly to continue. Consider part of his life skills learning- learning to manage being cared for by others. At least doing it early on you will be about to help east the transition.

you will need to be blunt and clear with social care though about what you will/won’t do.

Oh and I agree regarding him moving out. If he’s at home ithink the care will inevitably fall to you. Maybe that could be a goal to work towards.

You're definitely not unreasonable OP.

My DSis has severe learning difficulties and I saw first hand what my parents went through, trying to find a future for all of them.

My DM ended up with quite severe depression as a result and it very nearly broke her completely. I remember hearing her sobbing in bed one particular day, the thought of which still upsets me now, over 20 years later.

After much stress and argument, at 16 they found her a place at a residential SEN college and at 18 she moved to a permanent care home where she's been ever since (she's in her 40s now). The home is set up to care for a variety of levels of disability with some units available for those that can be more independent through to specialist units designed for those with the most complex needs.

My DPs learned that they couldn't be "nice" with Social Services. Everyone around them was being given places and assistance but my parents weren't getting anything. It seems SS were helping those that demanded things the loudest, whereas my parents were being polite. My DM's depression actually ended up helping things along as her wonderful GP got involved (those were the days!).

So, no OP, you're not unreasonable. I echo PP's point about trying to seek some supported living for your son.

My DM was the same as you - couldn't work after my sister was born as her needs were just too great, and there was no wrap around childcare for children with her level of disability. Once my sister had left home she did get back in to work. At that point she was in her late 40s but hadn't worked since she was 20. She got in to an admin job with the local council and worked for another 20 years until she retired recently.

She admitted to me over Christmas that as much as they love my sister, she did change their lives completely and that life would have been a lot more comfortable than it has been.

It's tough, and I send you many un-mumsnetty hugs!

Op I feel like we could be best buddies!!! There is so much pressure on parents to fight and fight and it's exhausting. If you asked parents of newborns to have the sleepless nights until their child is 25, they couldn't do it. Yet us parents of disabled children are supposed to just give and give

You have done a wonderful job OP, I hope you feel very sincerely proud of yourself.

I hope the system can provide what you and your son need.

You could try contacting www.advanceuk.org/services/housing
They offer supported living.

OP I have the same situation as you and I get it. I'm exhausted and I've had enough and I fear that I will never be truly free of this responsibility. I've given up everything for DD and It's too much to bear sometimes isn't it?

You need to work on Adult Services at the LA to do a Carers Assessment and an Adult Assessment on your son. The objective is to get LA to find PAs so you can start to step back.

You need this partly for your own sanity and partly because you need to start building infrastructure around your son that isn't 100% dependent on you. One day you won't be able to do everything and that needs to be prepared for slowly and surely.

BTW this is another slow, long, painful assessment process, but it needs to be done for both your sakes.

Do you get carer's allowance?
Yanbu to get outside help, it sounds incredibly tough esp because you've been nursing your relatives!

Time to prepare your son for the future . Allow yourself to withdraw to help your DS cope when you are no longer able to care for him.

God love you OP, that sounds so very tough.

Have you explored the possibility of a group home for him? An organisation such as this. www.southdown.org/ . There will be something similar in your area. I worked with disabled adults for 11 years, and was always so admiring of parents such as you. It's a horrendously difficult, tiring job. I also feel that where possible, disabled people should progress in life just as others do, and that means leaving home at some point. One of the saddest things I ever saw was a young woman who had to be moved into a group home because her mother died suddenly. Had her mother moved her earlier, at least part of the trauma would have been removed.
Meanwhile, could he use some of his benefits to employ a PA once a week? That would give you a break from it all, including the admin. My disabled friend has employed a PA who takes him out, helps with form filling, and is generally like a good friend.

I could have written this post myself, only difference is I'm the stepmum!
I've been SS full time carer since he was 2 years old, he's now almost 22.
His mum walked out on him & his brother when they were almost 1 & 4, still to this day she has hardly any contact with them.
The 1st year they lived with us, myself & DH were both working full time & relying on DH's mum for childcare. MIL was struggling, I was then made redundant whilst pregnant & basically fell into being a SAHM/carer.
I desperately want to work & have a life of my own outside of family life but how do you do that when you have an adult child that requires so much support??
Aside from myself, I also want a better life for my stepson because at the moment he doesn't have much of one.
I have gotten the ball rolling by contacting adult social services but have been told I'm in for a long wait.

Yes, look at Supported Living - but be prepared for another fight. Document every email/letter/phone call so you can turn up at every meeting with a big file so you can hold everyone to account. It's exhausting and I'm so glad I ve given up my job as Chief Warrior Parent,

My eldest son went into residential living at 18 and onto supported living three years later. We needed an adult social worker and he required a needs assessment.

I felt terrible at first. I really felt guilty because I was his mother, and I could not meet his needs. However, he needed a team around him, and now he enjoys his supported flat, he has some great members of staff working with him, and he is attending a part time college course and doing some voluntary work (things I wanted for him, but could not support on my own).

Adult Social Care should be helping here.

Thank you for your messages.

have you asked SS for a care needs assessment for your son? My relative got one for her son……but there was a criteria for this……she was asked …… Is he on the LD register at your GP practice? Did the person have an EHCP at school? ……yes to both….. she then waited around 6 months on a waiting list for a Social Worker to be allocated from the LD team…..they completed the assessment and her son was given the equivalent of 20 hours direct payments to use to hire a PA …..her son also went on a waiting list for semi supported living ( own 1 bed flat ….but with warden on site….) …..that was 14 months ago…. He will move into his new accommodation at Easter this year…..my relatives son has a learning disability and had Attended mainstream school with a 1 -2-1 support…..he is also now in receipt of PIP and Disabilty UC ….so gets around £1100 a month plus his rent will be paid when he gets his flat and council tax….he was also given a free bus pass……it has been a hard slog for my relative to apply for all these and go through the processes….lots of hoops to jump thru…..I am very proud of her