To not want to live with DC1 for the rest of my life even though I am his carer?

[Tiredanddone]

Does that make me an awful person?
Ds in in his 20s and has autism and some learning difficulties, they are also on the learning disability register. I am his registered carer. DS would need to live in supported accommodation to live independently but can do some things for himself. He just will not.

He does need support, he is not safe with things like the iron, he would forget things are in the oven, put things in the microwave that cannot go in and would burn himself taking things out of the oven, draining water from a pain and things such as that. He also needs support to manage and attend appointments, respond to emails and letters and pay bills.
He cannot be left home alone for more than an hour without starting to phone me because he does not like being on his own and definitely cannot be left across times he might want to eat.
The problem is there are things he can do but he will absolutely not and it has caused a lot of arguments. In fact he will not do anything at all. He won't wash up because he says he does not like the feel of it and it causes sensory issues, I bought gloves, he still will not do it, I repeatedly show him how to use the washer but he will not, he says he does not understand but is more than capable of doing it and has a massive meltdown if he has not got what he needs.
On days he is not at part time work he not get dressed at all. He sits in his room on the internet or games.
He will go to the shop on his way home from work but will not go at any other time. He will not take the dog out. He does nothing at all.

I myself am autistic and also have MS and PTSD. I am exhausted. I get no support or respite, if he is not at work the few hours a week then he is with me and I do everything. I have tried to reach out to outside agencies but he will not engage with them. I have tried to find support for me also but I can never attend anything as he is always with me.

I am tired, I am burnt out. I am tired of walking on egg shells waiting for the explosion of meltdowns, tired of doing everything myself and honestly I do not want to do this for another 40 plus years, I have no life, I am chronically ill myself but feel trapped by my son.

Am I a terrible person and Mother?

Hi OP, I'm not expert in this at all and PPs have already offered good and informed advice.

I just wanted to share my closest experience, with a school friend's older brother who had limited independence due to autism and wasn't safe to cook for himself as he wasn't risk aware around heat and flame.

They had great success when he got into "deli sandwiches" - he'd seen them on some US tv show and wanted to make them himself - his mum encouraged and supported his interest and they became his special thing! The mum would buy sliced cooked chicken, sliced ham, pepperoni, swiss cheese and things. She prepped shredded lettuce and sliced tomatoes in tupperware for him.

He was the "chef" layering up all the "deli" ingredients and sometimes it would be bagels and sometimes french bread and sometimes three layers of sandwich bread. He had them for breakfast and lunch and was self-sufficient in making them when he got hungry and he was very proud to offer them to the rest of the family too.

Could something like this work? No risk with heat or knives, and it gives him a sense of independence and achievement?

I really wish you all the best and I hope that you find some way forward that gives you more time and space.

Yanbu and he would probably do a lot better in supported living as it won't be his mum badgering him.

However he isn't going to engage with moving out as he'll find change very difficult and thinks you will be there forever.

You are going to have to be absolutely determined in driving this forward, that your job as carer has come to an end and while placements may be limited, he needs to live in one.

You're not a terrible person Op, I wish I had half your patience and forebearance.
As his DM you've taken care of all your DS's needs all his life and he's used to you doing everything so he sees no need for change, he doesn't understand how hard it is for you to do this or how much harder this will be for you in the future.

There were two Brothers living with their DM near me, I don't know the details but neither of them was capable of living alone and their DM looked after them both, the house got more and more neglected and dirty looking as she got older until she passed away. The house was sold and both men taken into care homes soon after and it always saddened me, she had a half life and the change from being at home and suddenly losing her and their home must have been a terrible shock to the sons. If at all possible it's better for your DS to go into supported living, you both deserve to live as full a life as possible

No I don't.
I had to google what that even was to be honest. We do not have a social worker. Part of that is my fault as prior to becoming more unwell I worked from home and just kind of managed. I did however get a break as he was at school and then college where as now he has finished college he is just at home.
I have asked the local carers centre to do a carers assessment for me so hopefully that will open doors.

It is tough isn't it. I am sorry you are in a similar situation, I am tired of having to fight every single step.
I have asked for a carers assessment thank you and I will have a look at local Facebook groups.
As I said it is partly my own fault for just trying to manage instead of reaching out earlier. It is much easier for the council and government if we just get on with it and drive ourselves into the ground.

OP, of course you are not a bad person. You sound completely burnt out by this at the moment.

I think you need to look towards the future. Eventually you will not be able to care for him. It would be better for him to be settled rather than having to go through some emergency process.

My cousin with Downs syndrome lives in a care home now and he loves it. My aunt still does a lot for him but it's different. She can have a lot more quality time with him now.

Omg
I'm you ,I'm 50 ,I'm autistic and my son is 25 ,he does 6 hours at college ,some weeks ..other than that he's at home ,doing nothing but gaming .he won't wash himself ever ,he makes horrendous mess ,he also has autism,ADHD and learning disabilities.
Happy to chat on pm

I was a local authority social worker in the 70's, 80's, and 90's.
Even 'though councils were not seriously underfunded then as they are now, it was often the case that people literally had to state that they were absolutely no longer willing/able to continue to care for their family member - and threaten to abandon him/her, or bring him/her to the Social Services office and basically leave them there.
Then, of course, something had to be done.
A case of "he who shouts loudest, etc......"

That old adage that our children behave better for other people applies here.

he is being lazy because he can be. Now, there is the element that he doesn’t have to mask in his home environment. However, if he moves into supported accommodation, eventually that will be his home environment. He will get comfortable there, but he also won’t be able to use you as a crutch.

you could then have a more equal relationship, which is what we want with our children as they become adults.

finding the right placement won’t be easy. You may also have to step back and let him fail in order for the right agencies to see that he actually needs help.

We have a residential home run by the National Autistic Society not far from us. Have you looked at their website to see what support they can signpost to?

That. It's time to prioritise yourself. Of course he says he doesn't want to go. But I bet you anything he'd be far happier living in assisted living with his peers, and he would do things because they do.

My professional background is in autism, and I'm only too aware of the stresses on parents. If you fall apart it's not going to help him. It's time to go to adult social care and be absolutely strong and determined in your dealings with them. You cannot go on and if they don't find him somewhere soon, they're going to have to find emergency care further down the line when you break.

Can he get a PA whilst you’re still here? To give you a break once or twice a week. You don’t sound like an awful person or mother you sound like an exhausted human being.

You need to speak with the adult social services team, it many take a while but you will be able to get him placed in a shared house with others needing similar support, but firstly he'll need a full assessment of his needs and if you don't already you will need to apply to the court of protection to manage his money as I'm assuming you'll need to, to sign a rental contract on his behalf you need it. HSBC have bank accounts suitable where you manage it and they have a card again you need they court of protection paperwork.

If you need any advice pm me

You have to be very persistent with social services btw, but there's a young lady with a similar diagnosis at dsd's supported house, you basically have to say in 3 / 6 months you need him to be placed, what are my options. Dsd was placed aged 23 but has profound round the clock needs

I think you are human, and anyone would feel the same in your position. I have no advice but I want you to treat yourself with kindness and see what an amazing mum you have been and will continue to be.

Have you looked at residential colleges? https://livingautism.com/autism-schools-autism-colleges/

You are not an awful person.
Your situation is not unique, there are many thousands of parents in your situation. This is a ticking timebomb, there are now so many children that will soon be adults that will need a lifetime of care, where these carers will come from who knows. I spoke with a lady the other day who told me she needs to live to a hundred as she has a "forever baby" and that she can't die until he does as there is nobody to take care of him. Such a sad and worrying situation.

You are not a terrible parent. I agree with PP about exploring independent living facilities. There are private providers as well as LA ones. It could be that independent living gives your DS the push he needs. You would still be able to visit but would give you more freedom.

I'd also look at your local SN Facebook and local offer. If independent living isn't something you want to go down you could look at respite or getting a PA to help get DS out the house on his days off. One of my friends works as a PA for many ASD adults. He does things like cinema trips, board game cafe trips, gym or swimming trips and just general shopping or out and about trips with them.

You sound like you aren't far from being completely burnt out, so well done for getting the ball rolling and asking for the assessment.

Its going to be so much better in the long run if he can have some independence with support and you can go from beinh his carer to being his mum once again. You know there will be setbacks and challenges along the way, and you'll have to be persistent in getting him the financial and physical support he needs, but you'll get there. He'll get there too. You are really doing the best for him to move to a new stage in life where he can thrive and you can get some of your energy and zest for life back. Come back in a year and give us an update Op, i'm hopeful things will be brighter for you both.

It sounds like he has pathological demand avoidance and it can be very difficult to deal with in adulthood. My mil has a 30 year old at home just like your son , he can do loads of things for himself but she'll do it for him so why would he.
I echo what others have said here , you need to withdraw the help , if he can do it himself then he should do it. If he doesn't then it doesn't get done. He's not going to like it but you'll have to weather that storm if you can. He'll fight the change at first but he will adjust because he has to.

The way to look at it is, regardless of how you feel about caring for him/living with him, he WILL have to go into assisted living at some point and will have to change and adapt. This is, undeniably, a huge upheaval in anyone’s life so better that it happens when you are young, fit (alive!) and able to help and support him through it than when you are dead and gone and he has that upset to content with at the same time.

Firstly you are in no way being unreasonable and are doing a great job no matter how much it feels like you aren’t. Unfortunately even with autism you sometimes have to go for the tough parenting approach. If he is capable of doing something keep pushing him, melt down or no melt down. Autism is not an excuse to be lazy, it is a reason why certain things are more difficult or need to be approached differently, but at the end of the day as an adult he will have to do things that make him uncomfortable, everyone does. My brother has autism and without pushing would literally sit and do nothing so I know first hand how frustrating it is.

I agree. As you get older it will only get harder, and the time will come when you aren't able to care for him at all. He needs to start being independent, and it's not good for him to be relying on you for everything. It would be better for both of you for him to be in supported accomodation. It's not all about what he wants, you are also entitled to a life of your own.

You can ask local council about shared lives schemes
It does not sound like he lacks capacity just needs help

https://sharedlivesplus.org.uk/