Supported Living - Feel guilty. Am I doing the right thing?

[ImpossibleChoiceGuilty]

My adult daughter has been mentally unwell for a few years. She’s also autistic and has a learning disability.

Her behaviour has been increasingly difficult with her having angry outbursts, shouting and screaming which can also happen through the night. Her younger sister is due to have a baby any day and she also lives with us at home. She told me that she doesn’t feel safe when her sister is angry like that and is worried about the safety of her baby when she arrives.

The thing is, because I know my eldest daughter hates people, hates going out and is generally scared of everything, I feel like deciding to place her in supported living is cruel to her as I know she will be immensely distressed. I will feel so awful.

Her life is currently spent in her bedroom, laid on her bed listening to music or on her phone. She doesn’t come downstairs, she’s like a prisoner in her room, which is only a box room. The supported living option is an entire flat which would be hers. She wouldn’t have to share with anyone, only the support staff who would be there.

I think deep down I know it is best for her but the guilt I feel is awful. I feel like I’ve failed her because I couldn’t look after her or get her better myself.

Then another difficult thing is the last 4/5 days, she has been so calm. No anger, no hysterical laughing, she’s been brilliant which then makes me doubt my decision.

Has anyone else been through this and their child has thrived in supported living? Am I doing the right thing?

I think you are doing the right thing - she can’t live with you forever and needs to gain more independence at some point. It sounds v hard though.

To be horribly blunt - what will your daughter do when you're dead? Yes it is years away (hopefully) but it is also inevitable.

"I think deep down I know it is best for her but the guilt I feel is awful."
It is best for her. The change will not be welcome, but it will become her new normal. Your guilt is misplaced (but no doubt deeply felt, regardless).

Rather than identifying your feelings as guilt, perhaps think of them as sadness that your daughter needs this help and that she cannot live with you. Because it really seems that she can’t and sheltered accommodation is very much in her long life interests

I agree with you all. I think it’s the distress I know this will cause and it’s a natural thing to not want our kids to be upset and/or distressed. I guess I feel like I’m the one causing it but at the same time, her living here is no longer sustainable.

Ive been told that childrens services would need to be involved with the baby if she was living here due to the risks involved.

Short term pain for long term gain. It sounds really hard, but she will need to live away from you at some point, and you do have to consider all the rest of the family and especially the new baby. Just try and keep your thoughts on how your family life might look a year from now if you don’t do this, and then if you do it, then deep breath and start the ball rolling.

OP I just wanted to come here and say that you are doing the right thing. I have a 32 year old autistic son with learning disabilities, he's been in supported living for a year now - he is thriving! If you'd asked me before if I thought he would cope, I would have said never in a million years.

The last few years of him living at home were incredibly tough and nearly brought me to a breakdown. The challenging behaviours and controlling his environment meant we literally tiptoed around him to avoid aggressive outbursts and our world grew smaller and smaller. It culminated in him having a massive meltdown, running in the road outside and the police being called. He spent some months in an assessment and treatment unit, started on anti-anxiety medication (we'd never managed to get him to take any medication before) and then transferred to a supported living placement. He shares a house with two other young men and has round the clock carers. He now accesses many activities in the community and his challenging behaviours are greatly reduced. He is calm and happy. I honestly never believed this could happen.

I had spent so many sleepless nights worrying about what would happen to him when we were no longer here to care for him. I can't tell you the relief I feel knowing that he will be cared for and his brothers will not have the burden of deciding what to do.

We worked closely with his social worker, learning disability team and the care provider to making the handover as smooth as possible. Even so, it was a very nerve wracking time and I was amazed at how well it has gone.

You are doing the right thing for your daughter, even though it feels incredibly scary and difficult. In the long run, it will be the best thing for both of you 💐

You are doing the right thing by both daughters. It is better you get your daughter into assisted living now than when you have passed and suddenly she is all alone without you making this big change. Therefore it is the opposite of failing your daughter; it ensuring she has a safe long term home.

Read the article about why Colin Farrell put his 21 year old son into a long term facility- he words it so well - basically better now than if he or the boys mother suddenly passes and at least this way he can help with the adjustment.

Thank you so much for this and I’m so glad your son is doing so well. When you say you didn’t think he would cope, was he similar to my daughter as in not leaving the house and being scared of people?

How you describe when your son was at home is the exact same thing for me. I’m constantly walking on eggshells to avoid an angry outburst. I don’t leave the house, I don’t have visitors really and when I do, I’m constantly worrying how she will react. There have been times where she has shouted obscene things at visitors.

How did the transition happen and how did he cope? That’s the part I’m mostly worried about, getting her out of the house.

Different perspective, I have a DB with mental illness and he benefitted loads from going into supported accommodation. Initially it was sharing with other adults and he has his own flat now. I don't think he'd have learnt so many independence skills if he hadn't needed to.

Things to be aware of - vulnerability to exploitative relationships, and every independent living skill has to be modelled and learned through practise as far as is possible.

as a parent you always worry about your kids no matter how old they are, but you are doing the right thing, for her, for you and for her sister. it may/will be a difficult transition but deep down you know its for the best

Some friends of mine put their son in support ed living and he’s thrived. He has friends with similar issues and it’s been great for him.

I remember your other thread and I think this is definitely the right move for all of you.

I support people like your dd. Honestly it could be the making of her. She's just existing at the moment not living. Good support workers and management will slowly find ways to improve her quality of life.
Have you had meetings with the care company yet?

Not yet, the social worker has said she has located a place but can’t say for certain until she completes her assessment tomorrow but she said it looks promising and they care for adults like my daughter. It does sound perfect for her so I really hope the care company say yes. It’s also local so I would be able to visit her

However hard it is you are doing the right thing.

We have some perspective from 20 years down the line. My husband has a sister who never left home and has diagnosed MH issues but was shielded. She has become increasingly dependent on PIL and isolated, as they reach the end. She is also completely intolerant of others and borderline unsafe around children. I thought PIL were kind and caring, now I don’t know if it was selfishness, embarrassment or just being overwhelmed. A serious plan should have been made 20 years ago.

Best wishes to you all. You can manage the transition, however hard it is.

I volunteer with a charity which works with adults and children with physical and learning disabilities ilities and ASD/ADHD. Several of our adults live in supported living arrangements, their family are involved, some of them visit family over night, every one of them is thriving, including one woman in her 40s who has moved into SL this year whose behaviour could be challenging while she lived with her parents. You really are acti ng In DD's long term best interests.

Your situation sounds very similar to ours. We lived like that for years and I think I was very close to a breakdown from the constant stress and anxiety 😔

The transition happened like this - my son was in an assessment & treatment unit for a number of months. It's essentially a hospital staffed by specialist learning disability nurses but instead of a ward, they have their own room and a big day room. He was given diazapam for a few days and then sertraline which he still takes. This was given covertly at first, hidden in food, and then he began taking it himself! He also started going out for little trips with the staff in the minibus or for a walk to the shops.

While he was in there, we had lots of meetings with the social worker, SALT, OT, psychology and his psychiatrist and they drew up a document which was essentially a blueprint of his needs, how best to communicate with him, his likes and dislikes, how to de-escalate behaviours etc. We visited a few providers and once we had agreed a placement, the learning disability team worked with their staff to prepare them and they visited our son in the unit to get to know him. He was transferred to the new place with staff from the unit and we were kept informed by phone of how it was going and we visited him a few days later. I'm honestly amazed at how well he settled - he wouldn't go anywhere except to the local shop with me once or twice a week and didn't tolerate visitors to the house well either. He's like a different person, so much calmer and going out to activities every day. I think he was actually quite stressed and unhappy at home after all his brothers grew up and moved out.

In a past job I worked with people with LDs, some of whom were in supported living. The right move can be amazing, for all concerned. Growing up and having your own space is part of being an adult. A good support team will respect your daughter's home as her own and will work with her to ensure they support her but don't intrude on her space.
You probably already have this in mind, but I would frame this as "having your own space" rather than anything to do with the baby.
I remember working with one young man whose parents were racked with guilt about him moving to supported accommodation. After it happened their relationship was much better because they were able to have a family relationship with him, not having to try to be both parents and carers. He responded better to boundaries from paid support staff (e.g. around aggression) because the relationship was different. Also, the family were healthier and in a better frame of mind to spend time together because they were not exhausted by being woken constantly.
Change can be hard, but it doesn't mean it is wrong.

The thing is you won't be around for ever. If your DD has not learned independence what would happen to her then. This sounds like a great opportunity for her. You can still go around and see her in her new flat.

Agree with PP, a planned move while there is still existing family support in the community is better than a crisis move after the family can no longer look after the person.

We have a situation like this in our extended family where the parents always insisted that they'll do everything themselves but their health is declining with nothing in place for their adult child. They've convinced themselves that their other child who has a full time job and kids is somehow going to take over when needed.

Does she know that there is a plan for supported living? If so, consider the possibility thats she's calmer because she knows she's moving on. Ive seen that happen several times before. Any change is difficult but people with autism, even with an accompanying learing disability, still want their own lives. And supported living is a much better model of care than residential care, in my view. Plus, as others have said, the change will come one way or another and its much better planned and with you around to help the transition.

The fact that the social worker is actively involved in supporting her transition means that they also think she would benefit from it . Trained staff are there that can cope with outbursts . You will be able to visit too. Sounds like a perfect solution.

Best wishes to you and dd @ImpossibleChoiceGuilty . You'll be able to check the place out obviously. And meet people living there.

It would have to happen at some point in the future, far better for it to be now in a planned way rather than in a crisis

@WhatNoRaisins Similar in our family. The sibling who lives at home can be extremely unpredictable with breakdowns/outbursts and so frightens DC. Beyond the MH issues they can be malicious and it has got to the point they are in no way alone with DC. No idea what PIL think will happen. A few decades ago I thought PIL were supportive and kind. Now it is clear there should have been a major plan. I suspect there has been elder abuse in the form of blocking access to certain medical care - the sibling often does not allow others in the house. I did intervene with a Dr at one point and there was action with care for PIL, though not support for the sibling.