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?

Can you find him accommodation in an assisted living house?
He needs to learn to be independent and you could visit him sometimes.

You absolutely are NOT a bad person or a terrible mother. When we set out on the journey of parenthood I don't think many of us envisage a lifetime of living with our children, the vast majority of us expect our kids to move out at some point.

I have no practical info for you but wanted to say there's nothing wrong with feeling like you don't want to be his carer for life. You sound exhausted by it all. It might actually be good for him to go to an assisted living situation. Have you a social worker or anyone like that you can talk to?

I have approached social services in regards to this but from what I can gather there are limited places available. He also will not engage the idea at all.
I have discussed with him that I will not always be here and just get him saying that if I die he will get a PA because he has to then.

Do you receive direct payments?

I know I sounds terribly harsh, but you cant let your son become a life sentence for you, particularly given that despite ability he chooses not to lift a finger to assist.
Time for supported accommodation so that you can live.

I think this will be my situation in about 10 years (Ds aged 11, complex autism, I have lupus and other complex disabilities). There isn’t enough help and support out there, is there? 😞 We’ve having the most horrendous time with Ds at the moment who is at his second specialist school and it’s all going wrong, so he’s home a lot and we have NO family support (none, no contact etc) and no respite and to be honest Ds would not accept respite and it would just be more trouble that it’s worth in terms of stress levels. I am trying to manage my own health needs and care for him, whilst dh works to try and keep things together.

I think in your situation I’d ask for a carers assessment through your local council, I know we did that with my Mum (before she died of bowel cancer) and it did open some doors for us in terms of getting some help and funding. I would also see if there are any SEN facebook groups for your local area and post on there and see if anyone is in a similar situation and how they got some sort of sheltered / supported housing sorted. I know there are such things, I’m not entirely sure how people get them organised.

God that sounds absolutely awful @Tiredanddone is his Dad around to back you up?

I would definitely continue to engage more forcefully with social services. Then maybe boundaries around answering your phone when you’re out and staying out longer. I don’t think you can introduce boundaries with rigid people generally without massive pushback but even less so I suspect with autism but that doesn’t mean you shouldn’t persevere.

I am seriously hoping that we can get something sorted for DS at that age but posts like yours remind me it is a real challenge for parents of children with AN.

Honestly, I would reduce comfort for him. Go out for two hours, not one, and leave your phone on silent. Then three hours, not one.

Make a list of adult skills he has to learn if he wants to continue to live with you, Explain very bluintly that you are tired and he is a functioning adult who must learn to do his share. Don't enable learned helplessness at all. Not at all.

Teach him one setting on the washing machine: mixed load at 30degrees. Keep the machine set to that at all times. You can't go wrong. Use those tabs that you put in the machine so he doesn't needs to work out how much powder or liquid or conditioner to use. Get him to put the wash load on 6 times with you overseeing, then make washing his responsibility. Help him set a timer and a second reminder on his phone or laptop to hang it out or transfer it to the dryer once the load is finished.

Teach him to cook three simple meals. A chicken traybake, pasta and sauce (buy jars of sauce to keep things simple) - things like that. Oversee him at first, then expect him to cook 3 times a week.

Divvy up all other household jobs 50/50. Make some allowances for sensory issues. But not too many. Point out you too have autism and you also have MS. It is impossible for you to continue without him doing his share.

Reassure him that you are 100% confident in his ability to learn these essential skills and it's normal to make some mistakes and to take some time, but not acceptable to give up without trying.

Create some missions for him: cooking, washing, doing the bins, mopping a floor, cleaning the bathroom etc and once he has mastered these basic skills, have a celebration or reward together for each milestone. Make him proud and feel good about himself for becoming more mature and capable.

My son is autistic and what I have learned is: it takes forever to teach skills, and they are resistant, but once the skill has been taught, they will use it and be proud of doing so.

I don’t know how you put up with that. It sounds awful. I would also take the tough approach & tell him he’s going into supported accommodation. You deserve a life.

It would probably be the making of him, as he will have to do some things himself instead of relying on you, which is actually holding him back.

Of course you are not a bad person! Please be kinder to yourself. You have been dealt a terrible hand in the card game of motherhood - this isn't parenthood, it's a prison sentence and a shit show, and not at all what you would have signed up for. There, I've said it!
You clearly love your child but you also deserve to have your space when you move into your mid life and older years.

My friend was in a similar position and was really close to cracking up. We (her friends) supported her in going to SS and basically she had to say she could not and would not look after her DS at home any longer.

She had to say that she couldn’t cope and would run away and leave him if they didn’t find him a supported living space. Her DS was furious but he loves it now and has made good friends.

You shouldn’t have to get to this point to get the help you need, but it’s Tory Britain folks…

I used to work for a private supported living company. I also have a DS with Downs. Could you go down the private route? They'll help you figure out the costs and what help you can get.

You are being very harsh on yourself.
I can't even imagine how hard it must be.
Not the point, but do you think he might also might have ADHD with regards to refusing to do things? I have it and it's known that due to lack of dopamine it's very difficult to complete tasks. I find this difficult because I can't breakdown tasks and get easily overwhelmed.
I'm not saying you should give him a free pass btw.

Also wanted to add that you're most definitely not an awful person. We all want our children to reach some level of independence away from us. Supported living is a brilliant way for our children to do this. They get supported to live a good, rewarding life.

I understand. I have been thinking of exactly the same with my dc today. Very similar, refuses to do anything and completely dependent on me. What I’m worried about is that they are very aggressive towards me and I am getting older. I don’t have 40 years left like you do so I would say to you see what you can put in place now.

I know a supported living place in a neighbouring town but my dc would absolutely hate it I know and it feels cruel. Good comments from pps.

You have to be determined and harsh
Get him assessed and get him into supported housing
You will not be here one day so best get him used to it

If your son has learning disabilities, please reach out to Mencap's helpline on 0808 8081111 or email them on [email protected]

They were a great source of advice when my son was diagnosed with LD. Good luck OP, my heart goes out to you and I think you definitely need support as a carer and support to look at housing options for your son 💐

Not terrible at all. See it as giving him independence and preparing for a time where you won't be here to look after him. Approach the council for supported housing options.

know a supported living place in a neighbouring town but my dc would absolutely hate it I know and it feels cruel. Good comments from pps.

You do not know that until he has tried it for 12 months
He might surprise you
Why not push for it and let him have the opportunity?

If after 6 or 12 months it is not working then review

@Tiredanddone , I understand how you feel. I saw it in my Parents with my brother who had Downs. The Parents kept on because it was their duty, their son their responsibility to provide and care for him. One day they both broke down and cried when someone from SS was doing a routine check on DBro. SS then placed him in a home for 2 weeks respite. He remained there because he liked it.
He actually grew up and developed for the years he was there. This was because he wasn't automatically the dumbest person in the room. Other residents asked him things and believed the answer.

Break Down and say something must be done because you cant carry on. It will be better for you and him.
Let him come to you for visits and you will see the differences.

You are absolutely NOT terrible at all. Everything is totally unmanageable at the moment so break the issues down: 1.DS's behaviour will take time to change (I agree with pps re the ADHD + re simple instructions/rules etc). Start small. Just to give you a sense of getting things into control, start say one list today. (I know it won't work yet but it'll allow the ideas to start very slowly sinking on)

1. Try to use as much energy as you have with social care/council to try to push for help. Make a nuisance of yourself... If 'the state' thinks it can get away with leaving it all to you, it will.
2. This is possibly ambitious, but if he can be safely left for a little longer (he may not be happy but as long as he's safe it's ok ), try taking yourself out of the situation for an hour, phone off. Just to get some quiet/space.

Hope things get better for you.

It's awful to say but so what if he hates it? We all hate change. But do it with a support worker facilitating it he may surprise you. Ultimately you'll die before him, then what will he do?

Push for it and let them go, as pp said "She had to say that she couldn’t cope and would run away and leave him if they didn’t find him a supported living space. Her DS was furious but he loves it now and has made good friends."

If you refuse to take a risk or chance then nothing will change

Op I think how you feel is perfectly understandable and reasonable. Most of us hope to have a little freedom after our kids are grown and caring for someone for the rest of your life is unappealing to many. Given how old is he im sure you have gone above and beyond for years.

To be fair I don’t think it’s useful for him to remain at home either. Inevitably there will come a time when you can’t care for him anymore. Better for him to get used to other care in a planned way than have to manage it in an emergency.

If I were you I’d work with him and his social worker towards a plan for independence. The SW and your son need to know that he will need to move out at x age. He can of course have a say about his care but sadly that doesn’t include being able to insist that he lives with you and you care for him full time.

is there maybe a half way house - eg a colleg he can’t attend in the week. We have one near us for young people with educational needs who reside their mom-fri term time. Or maybe he stays at home but has carers and they start working with him to take some of the tasks from you?

whatever happens I think it is ok to be clear that you need a change.