Should I move on

I am almost 80. My eldest child, aged 59, lives with me, she is completely disabled through rheumatoid arthritis. I admit that I struggle a lot of the time, although she does have carer visits 4 times a day, plus once in the night. The district nurses also come daily to attend to pressure sores, and one of them has suggested that my daughter goes "into care", but she flatly refuses, says she`ll kill herself first. My own mobility isn`t very good, and I spend a lot of time crying

Please don’t criticise the OP as social services and everyone else dress it as ‘putting them in care’ or ‘sending them away’ and it continues forever. It isn’t me or the Op, it’s everyone else who thinks they could do better

Like the exwife I have experience of a family member's future not being thought through carefully enough.
I think you would be wise to start finding a place where your son will be cared for and happy, and then you have time to make sure he is settled over a period of time rather than a sudden change.

It will be difficult making two big changes to your life at once but it will be for the best in the end. Don't feel guilty - you are securing his future.

Good luck with your search, you are 100% right to start now. Other flats will come up and you will find a way for both of you to be happy.

Now is probably a good time to find a care home that he wants to live in and you can visit frequently. Many carehomes will let you visit for a week to see if he likes it there.

I am not sure I like the expression put him in care as it sounds like you are just dumping him there and I am sure that is not what you are doing. He needs to be gradualy less dependent on you and when you have looked after him all his life that can be difficult.

That is awful Hithere

Your son's future is the priority here

I have a relative totally reliant on family due to disabilities + lack of trust in his abilities + relatives putting him down (totally NOT your case)
As soon as his carer dies, he goes into a care home
His closest relatives can see nothing wrong with this plan (shaking my head)

You really do need to consult your sons Social Worker and raise your long term concerns with them. Perhaps you could request an MDT meeting in the hope of establishing the best way forward, after all it is your son who is the main concern surely?

Great advice from Theexwife Jayneco. I think you're wise to start thinking about you son in the event of something happening to you.

Please don't feel guilty, this is a difficult balance and you need to consider what will be good for you and your son.

I think that you are very wise to begin looking to the future. You are right that you cannot continue to look after him indefinitely; and also it is fine to think about the possibility of having some life to enjoy yourself before you get too old - and that is nothing to feel guilty about.

Start the ball rolling with his social worker - tell him/her what you are thinking. Ask for a carer's assessment. You need to start looking at suitable options for your son, which probably means residential care form your description of his needs.

Is your son verbal and able to discuss this at all?

It is OK to want to do this; it really is.

I have also been in this situation and it is heart wrenching. My dd is a similar age to your son and lives with 2:1/1:1 care in a residential placement. Emotionally it really isn't easy but not being exhausted all the time gives you chance to be a Mum rather than a carer and it also gives you more clarity to make decisions. 2 days a week at a day centre is absolutely inadequate. You have nothing to feel guilty about. Ask his social worker what his options are.

Then look at selling your house after he is settled. You don't want to be dealing with both at the same time, it will overwhelm you

There are charities out there that help people with autism and challenging behaviour to live independently with round the clock support if necessary. (My daughter worked in a team supporting someone to move into their own flat with 2:1 24 hour support).

It is a fact that you will not be around forever, this needs to be discussed with his social worker and as a carer you should also have a support plan in place.

You need to discuss arranging independent living for your son with a social worker. You will not be around for ever or your health might mean you can’t manage so you need to make a long plan for the future for him. I was in a similar situation to you, first my daughter went into a residential place and learnt the skills for independent living before finally moving into her own place in the community with plenty of support. It needs to be done to safe guard your son for the future

As one who has been in this position, I strongly suggest you get something in place sooner rather than later. Starting point should be your local authority learning disability team.
When our son, who sadly died a year ago, was a child, I attended a Mencap meeting on this very subject. Many of the parents/caters were pretty elderly and still had their adult children at home with them. One woman said she couldn’t stay long as she couldn’t leave her son on his own for very long.
The Mencap representative didn’t hold back. He told the audience that it wasn’t a matter of ‘if’ something happened to them, it would happen. And then, it would become an emergency situation which could be a disaster. Far better to plan ahead. Good luck.

Start now , with the help of your son’s social worker, to research options for your son’s future. Don’t look at it as failure or weakness, or giving up on him or being selfish. You are helping to secure his future which is the most loving thing you can do. It is not ‘if’ but ‘when’ something happens to you, you will want to know that he is safe and settled for the rest of his life. You have cared for him for 26 years and you too are entitled to a life of your own . Looking after an Autistic adult is relentless and you shouldn’t be doing that unsupported. When you can no longer cope , and it is when, not if, his care will become an emergency and you will have no choice and no say in his placement.
Contact the National Autistic Society for advice.

I really feel for you and you don't seem to have support from his father. I would suggest looking at Camphill Communities. They are expensive but you would have the peace of mind of knowing that he would be wonderfully cared for and he would be part of a community and learning new skills..

Thank you

Can you discuss how you feel and your plans, for both you and your son, with his social worker?
You're right to make plans and try to future-proof both your living arrangements.

It sounds as if you are struggling to manage and desperately looking for a way out.

This is a huge burden of responsibility on you.

I really think you need to plan this more carefully. Other homes will come up. If you rush this decision you may struggle to deal with it at a future date.

Seek advice, take the time to find a good place for your son that will enable him to live his life in a positive way. Find somewhere he can socialise and have good support. Think about your access to him and other family members who want to visit.

I think if you fully know you have done your best for him doing what is best for you will feel more comfortable in the long term

My son has autism and challenging behaviours as well, he has a social worker. I just feel so guilty and losing him and my home as well is a massive decision. But feel time is running out for me to have a life as well. I can not leave him on his own and his daycare since Covid has been cut from 5 days a week to 2. I am unable to find careers to help me at home, he is allocated 2-1 carers because of his challenging behaviours.

Forget the garden flat.
Prioritise your son and do as theexwife says to find accommodation for him, then find yourself somewhere.

I have seen the devastation it causes when a parent of a disabled person dies.

Now would be a good time to have a fased going into care. You have time to choose a place that would suit him, he could go for visits, then longer stays until he is settled.

If you died suddenly the choice of where he goes would not be yours and there would be too many changes at once for your son.

He may actually prefer to be in a home with other like minded people and give him a certain amount of independence.

Obviously you have to plan for the future of your son, but you can't just 'put him into care'.

You need to investigate supported living - does he have a social worker?