If you're a carer to your children

[MrsMorseEndeavour]

Do you ever feel trapped? Like you want more from life but can't?

I know this is going to sound really selfish, but I was at my SIL & DBs house at the weekend and they have an amazing house, both have really good jobs, nice cars, a holiday home abroad, just living the dream.

I am full time carer to my two adult children, one of which still lives at home, council house, on benefits and knowing this won't change. They are both very dependent on me and can't be left more than a few hours.

I was looking at jobs last Night. I don't know why, just looking at what I could potentially have been doing if I was able to. I saw one I would have loved to do. Full time, good pay, interesting. It then made me sad that I'll never be able to get out of this rut. Stuck in a council house forever, on benefits forever, struggling both financially and with the loneliness that comes with caring brings.

Then I felt really bad because I know it can't be helped. My children didn't ask to be disabled. I just feel like it's all a bit hopeless at times.

Have you had a carers assessment to see what you support you could be eligible for?

You are not alone. I had this very conversation with a friend yesterday. Its incredibly hard.

Yes - for multiple (although only get carers allowance for one). I’ll never be able to work due to caring responsibilities plus my own medical issues. It’s very isolating

Yep, 10 year old and 19yo. 10 yo will be very unlikely to leave home 19 yo has some semblance of independence and still at home but both wheelchair users full time, it's a hard world for them both. Many people don't understand, it can be a giant hole of loneliness with no one getting it, the emotional exhaustion, the physical stress and the very real fear of the future.

I don't really know how that would help with me wanting more from my life but having two people that rely on me totally. Isn't that just to assess your emotional needs and practical advice?

I understand. It’s very limiting in so many ways.

They're adults now so I'm wondering if it may be for the best to start looking at supported living flats for them? Or due to the nature of their disabilities, would it be a care home?

I'm not necessarily thinking you should do that just so you can work and get your freedom back. It's more a concern about what would happen to them if you became unwell and had to go into hospital or even if you died.

It may be a good idea to help them to get settled somewhere now so that you know they are safe, somewhere you could visit all the time.

It would be a bug adjustment for all of you now but I always think it's better to do it now than for an unexpected crisis happen and then all hell breaks loose and it's upsetting and traumatic for everyone.

These were my thoughts exactly.

@Whatapickle23 I know you mean well in your comment. However do you realise how hard that this is to achieve? A long-term plan maybe but not the magic answer often offered on MN. I feel for you OP - my DS is 20 and still very dependent on us. We are starting to look at semi independent living but SS are dragging their feet because of the cost. My DS has behaviour difficulties and even when he is out and about with his support workers we get calls (at home/at work) complaining about his behaviour (all part of his syndrome) - its a hard road.

@PattyDukeAstin Extremely hard both emotionally and practically, I imagine but surely it's better to start making plans now than to leave it. Your post says it's taking you a lot of time and effort, as well as stress I bet! Better to go through all that now than when you're in your 70s or 80s and struggling yourself.

A carers assessment could (I believe, I haven’t done it) lead to support for them so you can work and accommodations at work (eg starting later etc). It sounds like you want a job and If you had a job you might find the rest better.

Most parents of dependent adults might have thought of this. OP doesn’t say how old her children are but why would she be preparing for her own death decades before it’s likely to happen?

The problem with threads about disabled children (of any age) is the comments are always full of “solutions” that don’t exist, from people who are fortunate enough to not understand the system.

Care homes! Residential schools! Respite!

Options like supported living etc aren't immediate fixes but the time taken means it's worth starting the process now. Even taking steps towards a future where you can do more things for yourself will make you feel better. And good for the 'children' as well.

So true.

I'm in the same position op. You have my sympathies. I did start a job a few years back but it's such a juggle!. If my dd health takes a dip then I'm relying on her siblings for help and they all have families of their own. I'm never going to be able to have a decent career, own my own home or even just some time to myself.

I recently started going to a local parents group for parents of disabled children. Made a few friends. It's really good to chat with people who really understand. It's helped to know I'm not the only person going through this.

There is help out there and young people can be transitioned to "independent" living at your request once they are adults. Dsd lives with 3 other young ladies plus round the clock care at the request of dp and his ex, 21 years of full time care (except school/college time,but right through the night) is enough for anyone but you have to ask, no not ask, demand.

For those who have lesser needs there's sheltered housing schemes too. You can also work, carers will be paid for once they are 18 if they cannot be left alone again you have to demand this

I am speaking from experience. I don’t know what your children’s disabilities are, of course, but I have an adult son, whose autism is severe enough for him to have attended a special school. He will never work in a paid environment but he does “earn” his benefits by working as a volunteer in a charity shop and on a social enterprise scheme. When he was twenty he moved into a group home, with other adults with learning disabilities. This helped him to gain confidence and life skills so that in 2019 he was able to move into a housing association flat, which he loves. We look after his bank accounts and help him where necessary but he is very independent and doing very well. A friend of ours has a similar aged autistic son, who is much more severely affected than our son as he cannot talk. He lives in a very sheltered group home. To the poster saying it is depressing to think about our own deaths, I don’t look at it in this way. However, the reality is that most of us will outlive our children. People with learning disabilities need much more preparation for this eventuality than others so sheltered, semi-independent or independent living is a very important goal. If disabled adults totally rely on their parents all their lives, the shock, despair and complete destruction of their lives will be far worse. It means waiting lists and lots of pushing - please don’t think that everything fell into place for us - but it is very much worth it. It is tempting to treat adults with disabilities as superannuated children but they are adults and deserve the chance to be treated as such, however limited it may seem in our eyes. It also helps our mental health as we get respite and can enjoy our time with them much more when they visit us and vice versa.

@Whatapickle23 - you misunderstand my post and I would suggest you are being a bit patronising. Not that I need to explain anything to a stranger on the Internet.. However we are in the process of securing semi-independent housing for our son - we have been doing this for 2 years already - the first step is a support team (not many have availability- it takes time). We now have the team. The second step is a suitable property - he is at the top of the list but again this takes time (you may be aware of the housing crisis). We are hoping things will come together over the next 18 months. However I will stop posting now because clearly I could be spending my time sorting things out for my son rather than being on mums net.

@PattyDukeAstin I'm sorry you felt patronised, that wasn't my intention at all, though it can be difficult to get across tone in a written message. I don't think I misunderstood your post and I haven't asked you for any explanation. I work in the area and my response to you was more acknowledging how hard it is and long these things take (through no fault of your own). I was agreeing with you but adding it's best that OP starts thinking about it now instead of waiting until she's elderly or unwell when she may not have the energy to go through the stress of it all.

Well.exactly and its very frustrating my son is only 13 but has very complex needs every time I read these threads posters will.breezily say have you thought of respite/ residential school.etc as though the thought had never crossed the Op,s mind
The reality is these things are very difficult to access
And that's quite apart from the emotional stress of it all

Without knowing the nature of your DCs disabilities it's difficult to comment but I know many parents of adults with disabilities (some severe so less so) and many of the young adults have moved into varying types of supported living. Their parents are still very much involved in their lives but are free enough to hold down jobs - something that wasn't possible when their DCs were at school and living at home.

Have your DCs had their own Social Care assessments with a view to them transitioning into living away from home? You won't be around to care for them forever.

Care homes! Residential schools! Respite!

When I suggest these things, it’s to parents, who seem to me, to be at the end of their tether! I know exactly what it takes to get residential schools, respite and care homes, because I’ve been there, done that and got the t shirt! Nobody handed it to us on a plate - I’ve appealed four times to the SEN and Disability Tribunal, and sought judicial review against my local authority at least 6 times, in respect of education and social care. I had to write to the Secretary of State for Health and NHS England over a two year period, to get an answer as to which CCG was responsible for DD, for Continuing Health Care Funding, before I could even apply for it!