Should I move on

OP, perhaps i have not understood the situation, but if you like that flat, which you say is bigger than your present home, why can't you buy it and move in there with your son.
and then look around, discuss his future care needs etc.

No Jane, I haven`t, but as long as I can still wash and dress myself I don`t need carers, I just feel like some time just for me. Sorry if that sounds selfish, but my daughter has had RA since she was 18, although it didn`t start getting really bad until a few years ago.

Hellogirl, as the resident ie unpaid 24/7 carer to your daughter, you are entitled to a carer's needs assessment by social services.
it is not linked to personal care needs.
more to do with exhaustion, support, respite, other options, and contingency plans.
eg what would happen if you had to go into hosp for a while ?

Hellogirl1 its about your daughters future not just whether you personally need carers, you need a plan. Your DD is not able to see ahead either to the time you cant care for her - she's sadly so scared she is blackmailing you with those threats. You poor love - but time to talk to them about both your long term needs xx

My niece is autistic and has learning disabilities. The best thing to happen to her has been the decision her parents made, at secondary age, to gradually move into specialised care. She went first to a specialised boarding school, and then a specialised further education community. She is now close to 50 and lives in a community where residents and helpers live together in family houses. She helps with daily activities and helps with the cooking and also paintings that are sold through the charity.

She is living a far more active and fulfilled life then she would have at home and because she has been in specialist community from an early age, she has also had the help to become more socialised and able to mix with people and do things that contribute to the community, and in their old age her parents, know she is safe and will be looked after as they and she wish, after her parents die.

Hellogirl1 I agree with janeJudge, seek help for yourself. Also investigate what alternative accommodation is available for your daughter. It does not have to be a care home, which I suspect is what she assumes. It is possible that, at her age, or when she is 60, she would qualify for a flat or bungalow in a sheltered housing development. with carers coming in as now and with an emergency alarm call. She would have her own self contained living quarters, which she could furnish etc to her taste and be independent even though she needs help.

Councils do not want people in care homes, if there are alternatives. My niece's local council wanted to move her into independent living, a flat and carers calling in (she has no physical disabilities). However when they tried to describe to her the alternative provisions and ask her to make a choice, it was quickly abundantly clear, that she was incapable of understanding what they were talking about to be able to make any kind of choice at all

pascal30

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..

That is a good idea.

Otherwise, could you enquire about supported living?
dimensions-uk.org/what-we-do/supported-living

A relative of mine manages to live reasonably independently in her own small flat but with a good level of support.

Do Camphill Communites cope with those who are aggressive and need 2 to 1 care? Not sure about that at all.

My DGD is severely disabled at 8, inducing cerebral palsy, virtually no sight, epilepsy, and learning difficulties. I hope like MOnica found she can find a space like that, but her lack of sight and mobility may mean a care home. She cant really help out in any meaningful way at all nor get about without supervision, as a fall is always likely.

She is now close to 50 and lives in a community where residents and helpers live together in family houses

My niece lived in a family house but became nervous because one of the other residents was rather aggressive.
She is much happier in her own small flat but with a fairly high level of support.

Wyllow3

Do Camphill Communites cope with those who are aggressive and need 2 to 1 care? Not sure about that at all.

My DGD is severely disabled at 8, inducing cerebral palsy, virtually no sight, epilepsy, and learning difficulties. I hope like MOnica found she can find a space like that, but her lack of sight and mobility may mean a care home. She cant really help out in any meaningful way at all nor get about without supervision, as a fall is always likely.

Hi Wyllow, I worked for a year in a big Camphill near Cape Town SA and we certainly did take very challenging clients but it was 20 years ago. You may well be correct about the communities in the UK nowadays, I am out of touch now but given my very positive experience of one I think it is possibly worth exploring...

I do not think Camphill communities in the UK would take someone in who could be aggressive to other people. Nor do I think they would take a someone as disabled as Wyllow3's grand daughter. Essdentially they facilitate the lives of people with mental disabilities, but, not the physically disabled.

Every charitable trust in this field will have a clear idea of which people will most benefit from the facilities that they can provide, and not take in people who they feel they are not equipped to cope with.

Monica, my daughter wouldn`t cope in a flat or bungalow on her own, she not only cannot walk, she can`t even stand up or feed herself, apart from sandwiches, toast, etc.

I agree with others jayneco much better to look for suitable accommodation for your son whilst you are still fit and well. I ran services for people with learning disabilities and it was so traumatic for them when the home situation broke down and there was no planned admission. So much better to work together to find the best place and help them settle. I wish you and your son good luck for the future.

My cousin lived with his mother until he was about 39. He had severe learning difficulties, and quadriplegic cerebral palsy. He died at the age of 57. The last 18 years were the best in his life, he really thrived in care. Had better medical attention, was treated as an adult not an outsize baby, made friends.He moved into supported housing with 2 friends & their carers & they threw parties for relatives etc. Whilst I wouldn't suggest that you're doing anything other than a wonderful job of caring for your son, which wasn't the case for him, care for disabled adults can be very very good. I would start looking before you get to feel too run down & resentful, or too isolated to make a new start.

I agree that it's a good idea to look at future options for your son.

This is NOT you being selfish. This is you recognizing that realistically, he's probably going to outlive you, and you're getting older. You won't be able to care for him indefinitely.

As both a nurse who has worked in nursing homes and as the daughter of a woman who lives in a carefully chosen facility where she's visited regularly by her children, I maintain that there is a considerable difference between dumping someone at the cheapest place you can find and never seeing them again, and taking the time to do your research and keeping in contact.

You may also find that your son benefits from moving to a facility. I don't know if this is true for you specifically, but some carers find that it's very difficult to keep someone mentally stimulated at home (depending on what their interests and individual challenges are). A facility will have other people with whom he can spend time, and will likely have activities and things he can do.

Hellogirl1, I have known of very severely handicapped people like your daughter being in flats etc, but I think what would worry me would be the loneliness.

You are in a difficult situation, as your daughter's level of disability does suggest that it would be wiser to sort out her future care, now, while you can still help her. It will be so much worse, if nothing is done until you become ill or die when in the rush to provide her with care in an emergency may leave her somewhere which really doesn't suit her.

Hellogirl1

Monica, my daughter wouldn`t cope in a flat or bungalow on her own, she not only cannot walk, she can`t even stand up or feed herself, apart from sandwiches, toast, etc.

No, Hellogirl, as you describe, she wouldn't cope on her own.
My niece copes but is physically able, so can engage in sporting and social activities, living in her own flat, but with good support.

Yes, as M0nica says, it is wise to sort out her future needs now.

She does have siblings, sadly reduced now from 4 to 3, so they would make sure she was alright, although none of them could have her living with them. She won`t even discuss the subject of care, apart from what she has now, but doesn`t seem to realise that I`m run ragged. My other kids say I should stick up more for myself, and tell her not to be so selfish, but I feel cruel just at the thought.

So how does she envisage her care when you cannot look after her?
What does she say when you ask her?

Hellogirl1 Some times you have to be cruel to be kind. You need to sit and talk to your daughter and tell her that you are reaching a point in your life where looking after her is too physically demanding and you may not be able to do so for much longer.

Could you seek some councilling to help you approach this subject with her? Could you speak to Social Services, who, I presume, are aready involved through organising and providing her care, about the situation, and what care she would get when you were not there through infirmity or death.

It may be that someone from Social Services or your local Carers UK, or Age UK can talk to your daughter. She needs to realise that not talking about the future does not make it go away and only makes her situation worse when it does happen.

I have every sympathy for both of you, she must be so frustrated that her life has been so limited by this illness and, as a mother, dealing with an adult child with this illness, must be devastating.

I understand how your other children feel, this daughter's life must dominate yours, almost to the exclusion of them, but telling her not to be selfish, isn't helpful. But she does need to realise that life cannot continue as it is now, and the moment of change has arrived, whether she wants to speak or think of it of it, or not. But, as Social Services will undoubtedly need to be involved in any change, perhaps talk to them first.

The district nurses, who come every day to dress her pressure sores, have said that she should be in care, but she flatly refuses. I said to her the other day that I was thinking of going into a home, as I`m so weary, she said "Go into a home then!" I asked her how she`d go on if I did, she said she`d manage.
I apologise to the OP, I didn`t mean to hijack her thread.

So, Hellogirl1, your daughter has clearly thought it through, whatever she may say, and thinks that she can manage.

You sound weary and in need of a long holiday, but whether you need to be in a care home I am not sure. presumably you would be self financing, so why not consider a retiremen flat for you, they can often be rented, as well as being bought.

You are, of course, being emotionally blackmailed by your daughter. Because she is so disabled the she knows that some people will be shocked that you could cease to care for her and go into supported living yourself and say you are abandoning her, but there comes a time when your needs must come first.

I would start by talking through the possibilities with someone from Social Services and go from there. Talk it through with your other children. They can see the problem and, it seems, support you.

Jayneco, you are amazing! There has been some sound advice on this thread. Start looking now , find what you like and introduce your son gradually to his new home. As long as you appear to be coping you will be left to continue. You are still ' young' enough to manage but obviously as you become older caring will become more difficult. Speak to professionals and explain how you feel. Good luck and do not feel guilty - you are not abandoning your son you are keeping him safe for the future.

Jayne please do something now before you’re pushed into it or your son is.You have to face facts that your son will one day have no choice but go where someone else chooses. Now he has a choice and you have his best interests. You can’t leave him in that situation and best to choose somewhere that will suit him now, the best place you can find. Also at your after a lifetime of caring you must have time now for you. If you like that flat go for it. Your son is blackmailing you because he is scared of change but he will face that sooner or later so do it now.

I agree with pascal30. Camphill communities are fantastic! I have known friends who worked there and others who have had close connections with them.
They provide a really supportive family style environment. The staff live onsite and create a very caring community. Also your son may find some small jobs and independence there.

They sometimes set up small local cafes and bakeries run by the people they look after, with a lot of support. It's excellent for the well-being and self esteem of the residents and a lovely resource for the community they provide the produce for.