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Forum newbie, carer old hat! - Carers UK Forum

Forum newbie, carer old hat!

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Hi I'm new to the forum despite being a member for years. It seems my support network is dwindling by the second, due to several bereavements and loss of support as people are scared of mental health issues! Maybe it will rub off on them?!
I gave up work 5 yrs ago to care full time for my daughter now 23yrs, who had a mental health breakdown and attempted suicide several times. I had tried to manage whilst still working untill her injuries meant she became housebound. She is still very high risk and following varying diagnosis and several changes of mental health teams, including a poor and dangerous transition to adult services, she is now diagnosed with a psychotic illness. For which she refuses medication. She is now more mobile but has been moved into her own flat which has made the caring role 100% more difficult. I do all the same just from a small distance.And now I have two households to run as she has become very dependent on me, and me only, my partner her dad died unexpectedly 5 yrs ago ( great yr for us) More recently she is being assessed for high functioning autism which would make alot of sense, but who listens to parents??!! I have a son 27yrs, but I try not to rely on him too much. The icing on the cake is that I also care for my sister who has mental health issues, PTSD anxiety, depression agoraphobia and a personality disorder. I can't really mix the two, so spend my life dealing with one or another. My daughter always takes priority which has put my sister's nose out of joint as I used to just care for her?? So that's me! Am I allowed to say I HATE caring...I'd go back to work tomorrow if I could. No Identity, no life, poor health ( both mental and physical) and I'm sooooo tired ALL the time and 100% isolated!! Great !?!?
When I was a poorly multiple carer, on the verge of a breakdown, the carers worker arranged counselling for me. It seemed a bit pointless at the beginning, I nearly gave up, but it was the BEST thing I ever did as a carer.
There always seemed to be a competition between my disabled mum living 6 miles away, and my son with learning difficulties in his own flat 15 miles away, as to who got most care. Me in the middle, running a business that was vital for income, as I too was widowed. I had inherited 30 tons, yes, tons, of new vintage lorry spares, really valuable if someone needed something, but I was no mechanic!
Counselling helped me set priorities.
Son had to come before mum, as he couldn't speak up for himself, she could.
I explained this to mum, who didn't like coming second, but understood why. I made sure she had the personal care she needed, but didn't do it myself.
Counselling also taught me how to manage mum's demands and expectations.
Your sister is a grown woman. When did she last ask Social Services for a Needs Assessment?
When did you last have a Carers Assessment from Social Services?

Most important of all, was that counselling gave me vital "permission" to do things for myself, I wasn't just a slave to the others, I was a person in my own right who could not be forced to do anything I didn't want to!
Sadly, MI (mental illness) can turn nice people into selfish monsters (self-focus is the psychological term I believe), who are just SO immersed in their OWN misery, they can't spare a thought for anyone else's (let alone the burden they are to those landed with caring for them)(however much their carers love them, sigh). It's all 'me me me me me'.....

Because it's SO difficult to determine what they can and can't do by way of minimising their adverse impact on us, I personally think one can only go by the amount of EFFORT they put in. If they really TRY to be as less of a 'pain' as they can, then they get brownie points and 'slack cut'.

That said, if something like autism is in the mix, all that probably goes out of the window, as they may genuinely be unable to comprehend the world in a way that accepts that other people (ie, their carers!) also have a 'right to not have to sacrifice themselves endlessly for their care'.....

Do beware of secondary gain, however - it's a term I heard of first on this forum, and looked up. Basically it is the 'advantage' that someone with MI gets from being mentally ill. It's a 'get out of all responsibility' card for them to play. It allows them to 'revert to childhood', have everyone else fussing over them, they themselves are expected to do 'nothing at all' (because oh, they are ILLLLLLLLL...)

I know I sound harsh (lot of MI in my family, sigh!), but in the end, IF they are capable of 'healing (and that's why I put the autism to one side in this respect), then they MUST do all they can to get healed - and if that includes taking meds, so be it. They CANNOT just 'have it all their own way' and endlessly play the MI card to sink into self-pity and not give a stuff for other people (or even others with MI - as is the case with your sister re your daughter!).

I do think it can help to think of MI as a 'monster' inside them. THEY are nice people - but the MI turns them into selfish, self-focussed 'monsters', unwilling to take responsibility for themselves, or to acknowledge what they are putting others through.

If I've offended, I apologise, but there you go - that's my take. As I say, if there is neurological involvement re ASD, the above probably can't apply at all.

BUT, bottom line, YOU have rights too - not just your daughter and sister.
Why does your daughter refuse medication? What reason does she give? Are the meds 'poisoning' her? My mother with paranoid schizophrenia refused all meds as they were 'part of the plot against her'... (sigh.) (when she finally DID take them, it was a LOT easier for us all!)
Hi Liz
Who moved your daughter into her own flat, without sufficient care? Surely it was never the plan that it would be solely you but at a slight distance?

If the aim was to get her independent then that process needs to start, even if in small slow steps. It sounds like she has increased her demands on you because she is either afraid of starting taking independent steps or is aware of how much effort it will take on her part to change, even in small things (which would fit with an autism diagnosis too)

Imho, both carees need to be encouraged to take responsibility for themselves, warts and all, and that means you stepping back and holding off while they learn and develop. Yes it does sound like helping a young child grow and mature but that is how I see it. A few falls and setbacks are part of growing up and perfection is not expected. Neither may reach a fully functioning independent adult-style life, but they can get a darned site closer then either currently is. They've learned to depend and rely on you too much, which is much easier then dealing with life themselves.

Get an invisible armoured suit, a strong backbone and the belief that you too are worthy of a life for YOU, one with time for holidays, friends and YOU and start putting things in place to support them forward, without enabling them to stay stuck.

We're here to support you, if you carry on as you are you will break, either physically or mentally, and then where would they be?

Kr
MrsA
As a parent, I would say your FIRST 'duty of care' is always to your daughter, not your sister. I would say that 'sets your priorities' however much your sister 'competes' for you.......

(Wise words as ever from Mrs A!)