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Feeling Trapped - Carers UK Forum

Feeling Trapped

A place for those 18-35 to chat about all things caring.

I'm new to the forum, I'm 22 and live with my mum and dad and my disabled brother. Having just come back from University, and with both my parents working full time and my brother being very poorly at the moment, I am now caring quite a lot for him. First of all, I know that compared to many people my caring responsibilities are nothing at all - but it is a lot with how things are right now.

Coming back home after a time away has shown me that there are a lot of things 'wrong' in our house. I don't think we're getting enough support for my brother. I know none of us - including my brother - are happy. Nothing seems to be working. Yet when I try to talk to my parents about the problem, to try and ask if we could change the support my brother gets, or just change something else, they get angry and basically say nothing can change and it's rude and rich coming from me when I have an 'escape route' if I find a job away from home and so on. But it's not that easy, because if I do get a job and move away, I'm still leaving my family in what I can see from a partially outside point of view is ridiculous.

I don't understand enough about how the support for my brother works, and so I don't know what can change. But I just feel trapped, helpless, pointless, and I feel like it's not just me - it's my whole family, except they think they can't do anything about it. And I'm so so so sure that they must be able to!! They just won't listen to me.

I wonder if anyone out there has felt the same as me at some point ...
Lizzie x
How old is your brother?

I think that I can understand your parents attitude but I can also understand your feelings.
Hi Lizzie, move out as soon as possible, because every day you leave it, the worse it will get.

It sounds like your parents are not doing the best for your brother. My son is 38, with severe learning difficulties, but lives in supported living, with carer support. A lot of my friends were critical of my decision for him first to become a boarder at school, then college, then move into residential care, and from there into his flat. Now they are very envious, stuck at home as pensioners with their child, and social services doing very little to help.

Your parents are very unlikely to listen to you. Can you explain who was caring for him when you were at uni, if they both work full time?! What is wrong with him?

What should happen, is he should have a Needs Assessment from Social Services, your parent's should have a Carers Assessment, look at what he needs, and meet those needs.

You are now an adult with all your life in front of you, these are very special years when you need to find a job, work, and enjoy your life. Don't let your parents treat you as a child, you are not. Too many people here, including me, because assumptions have been made by others which have affected the rest of their lives.

By all means contact Social Services, ask for copies of the relevant disability plans they will have etc. but I'm afraid your parents are unlikely to do anything to improve things whilst you are still there.
Hi Lizzie
I am thinking back to reading posts from older carers left caring for a sibling once their parents become incapacitated. You are still young and your parents may only be in their 40s but it is important you get some future plan in place before it lands at your door and are expected to carry on where your parents left off out of duty.
Hi Lizzie
Could you kindly tell us more about your brother and his needs, and what help and support and benefits he, and the family are getting?
Hopefully we can then come up with specific suggestion to help all of you.
Do your parents get a break at all?

I think it would be worth 'giving it a go' before you chuck in the towel and leave home (which may have to happen.)

As others are saying, we need to understand just what the situation is with your brother, and then to guide you (well, not me, it's not my area of care)(mine is my 93 y/o MIL with advanced dementia, now in a care home) (but lots of forum members know the 'care system' inside out, plus there is the team of experts at Carers UK itself, who are contactable best via email.)

I think if YOU find out what COULD be done for your brother, as in it's not just coming from 'you' (because I agree, your parents are unlikely to regard you as a font of wisdom alas!) but from other experienced carers and from the experts as well, then you can put that to them in terms of practical things they can do to ameliorate their situation.

Could your brother participate in this? As in, has he sufficient mental capacity to enter into a discussion about what he wants, and what he would prefer out of what may be the (albeit limited) options?

It does sound like your parents are in a kind of 'mental trap' - a sense of bitter frustrated resignation that there, as they threw at you, for them 'no escape'. But it is very common on this forum to encounter carers who are so 'up to their eyes and over' in the every-day grind of caring, that they can no longer see the woods for the trees. They are what could be called endlessly 'firefighting', backing into the future just coping day by day, and not taking a step back to see what, potentially, could be altered.

Also, your parents may not be aware of changes that might now be options for them? And then again, they may, you know be what others might think of as 'over-protective' of your brother. Carers very often, understandably, think that 'no one else can do what I do!' They may, therefore, be turning down outside help, because they are determined to do it all themselves. Or they are lacerated by guilt at the thought of 'abandoning' their son (parental guilt is VERY strong!!!)(as is the guilt that children can feel about 'handing over' their parents to external carers - even me, who is only a daughter in law, still 'feel bad' that my poor MIL is in a care home, even though it would be impossible for me to look after her now in her advanced state of mental decline, and even when she wasn't this bad, I was nearly driven to a nervous breakdown at having my life 'hijacked' by caring for her....)

Also, your brother, perhaps, has got very used to his mum and dad looking after him, and may 'resist' having anyone else (except you). That, again, is very common on this forum - usually with elderly parents who 'only want their daughter/son' to look after them, and 'won't have social workers in the house' etc etc. Family has to stad firm on that one, and insist that unless they DO agree to have careworkers to help, the only alternative will be residential care....

So, all in all, let's see if a collective response here could point you towards changes that your parents could make to their 'careload', without that being you! (Fine if you 'help out' while you are on your long vac, but it should be an 'extra' not an 'assumption'. Your long vacs are basically for you!)

With all that, you might like to think to yourself perhaps - OK, I'll spend this summer trying to make things different for my parents, and getting in extra help for them (not me!), but if they stubbornly resist and really refuse to change their ways, then, alas, I will have to 'throw in the towel' and really 'move out''

Even with the above, I would still recommend that you plan some time away from home during the long vac, eg, get abroad, see friends, maybe go up to uni early (I know if you are involved in sports that is often the time to go up to get some early training) (It also depends if you are in hall, where you may not be able to get access till term starts, or in private lettings, in which case you'll be paying the whole summer anyway probably!!!)

Wishing you well, and hoping things can improve all round, for ALL of you.

Kind regards, Jenny