Just to want my own life back?

[oldermummy11]

I'll try to keep this brief......I have a family....and a job I'm currently fighting to keep through yet another achieving change programme.....and health problems....but on top of this I have a disabled brother, he's 46 and has Aspergers plus other health issues. I am finding it really hard as he goes from one crisis to another, and as Mum is 77 I am the one who has all the phone calls, emails, texts, meetings with professionals and TBH I am at the end of my tether, I would really love to walk away as it's affecting my sleep, job and my whole life but I don't think I can. This year has been a nightmare, culminating in the move to new accommodation and carers, the preparation alone for this was a fiasco and I had to do almost everything including prepare his accommodation and now it appears it's breaking down again and he has severe health problems which they don't appear to be handling well, I just don't know what's around the corner for him and I feel so overwhelmed sometimes.......if not always.

Does he not have a social worker? It sounds like you need to step back and let the LA take repsonsibility for him more.

Very very tough though I know

OMG, OP, I really feel for you.
Could you talk to any of your brothers carers about this? Is there someone involved in his care who you have a strong enough relationship with so that you can at least explain your situation so that maybe they can try and help you to have a bit of a break from his arrangements even for a short while?
I know it might be a long shot, but at least if there's someone really good who has some idea of your position on this then they'll think of your needs too?

I don't think I can really offer any advice but just to say I hear you, and can see how tough things are. Is there no other immediate family who can relieve some of the weight of responsibility from your shoulders? I think that you may need to speak to your GP with a view to some counselling to help you find/develop coping strategies, but also to see if there are other support networks out there for your brother.

x-posted with RM.

My brothers carers are all new, they hardly know him. As for his social worker, (when she's there) all she can talk about is funding, and more funding issues, she's not very compassionate. There's only me and my brother, all other family members don't want to know, I have always felt like an only child. I am the 'strong' one who supports everyone else...
GP, I can bet there is a long list for CBT which I've had in the past for other issues and I don't want to go on anti-depressants.
His last Social worker who left said I should perhaps take a step back and that was my intention when he moved. Although I'm not visiting him as I find it too distressing (my hubby does though) there's never a day without a phone call or text...
Thanks for all your messages, daft I know but nice to think someone is hearing me out there!

OP, I really feel for you. Caring can really sap all your energy, I remember from when I was in a similar situation (with my grandmother).

It's difficult to explain to people who have not been in the same situation how you feel without sounding like you don't want to do it. I can see that you care for your brother hugely, yet the responsibility can really be so overwhelming.

My DM is now in a similar position with her father; he doesn't need constant care but he is very elderly and she spends all her weekends looking after him, plus twice a week while holding down a full time job. She has a DB but he lives fairly far away and has teenage children (late starter) so can't manage to contribute very much. I know it's not easy being the strong one all the time.

I remember some of the carers were real diamonds but others seemed very unsympathetic. Hopefully there will be a couple you get to know who will be more compassionate. Meanwhile a big hug from me.

also wanted to say i hear how tough this is for you and how much you must feel crushed and boxed in by this situation.

i've not been in your situation. by daily phonecalls/texts/emails do you mean from your bro? i get that there are lots of possibly urgent communications coming in. but is there any way you can start creating a managing system for dealing with brother-related issues so you don't feel constantly bombarded, as you have by deciding not to visit eg, set specific periods in the day/week (not sure what is realistic) when you look at these communications and allow yourself a mental break otherwise? if things are too much in crisis at mo it might be you ringfence a period when you DON'T look at them iyswim.

OP - I would demand a review. At the review ask for there to be an independent advocate, SS will have access to this. ~Does your brother have an extensive support plan and are the staff adequately trained? With these tools in place there should be no need for you to be contacted constantly.

If your social worker is not about then you should get a second name of someone you can talk to. I feel your frustration here as they are never there when I need to speak to them either but there should be someone you can speak to whether your brothers SW is available or not.

For whats its worth, I have moved several people with autism and aspergers from their family homes and into independent living, I know what you mean about the funding as it is frustrating but hopefully this will calm down. A good team of staff does make all the difference.

The support staff however should be able to manage the situation if suitably trained. Does he have communication? or behaviours that are deemed challenging?

If you want to PM me with a bit more information on him I could let you know what should be in place with his carers and any tools you may find useful.

Ask for a new Care Manager. Don't be afraid to tell them why.

Find an advocate to support him to speak for himself

Are you in touch with the National Autistic Society?

There's a lot of reluctance to move adults after the whole Winterbourne View fiasco, plus one of the big care providers (New Cross???) are going bust which is causing big problems. SS are under pressure to close all cases in just 10 weeks

I worked with adults with LD up until recently and would actually recommend the company I worked for Happy to name them via PM if you'd like

Finally, you may find that your in the unfortunate position that the more you do, the less SS will step in. If you let it collapse then yes it will be shit for your brother for a while, but SS will take over pull their heads out of their arses

He is in supported living, I asked for an advocate but TBH he was rubbish, and left as he thought he wasn't needed as he had a sister!!! I have asked for another through his SW as I said it was exhausting sometimes and I think someone else should be involved but nothing has happened so far, I think I will try to get one myself through the link above (thanks for that!)
He was in hospital for assessment for 20 months before he recently moved so it's not as if they didn't have the time to plan this right. I was assured that the service providers would be fine 'if they can't cope no one can' as he has behavioural issues. I am not impressed, we had a situation last Sunday night where he was falling everywhere due to new meds or a UTI (don't know which) and when we called the duty SW for help we were told there was no one to stay overnight and could my husband stay with him?? Eventually his carer stayed but if he couldn't no one else was there. I want to complain and have asked for how to do this. We have a meeting soon, we haven't had the post discharge meeting that never went ahead as no one was available, it's just a sham. The whole thing is a nightmare where I can see no end.

"he thought he wasn't needed as he had a sister"

This is the attitude the will take. He will get more help if you walk away. Which is complete and utter shit

Supported living is a complete con, designed to save money. I have no doubt it works very well for those who are "only" physically disabled, but those with a learning disability end up isolated and abandoned. (Professional carer's opinion!)

Push for residential, and tell them exactly how fucking hard it is for you to raise your family and do their job for them at the same time.

A nice picture of someone I used to work with at the only company I would recommend - I worked there for a year, left because I needed out of the industry for personal reasons.

I wanted to say hello to oldermummy
My DB has LD and has a really hard time of it recently being moved around and is currently in hospital after a few years of being placed in the wrong environments.
You have to push very very hard for what you want and after whats happened when they asked your DH to stay with him for the night its time to demand residential care.
I have no real advice to offer as both my parents and I are exhausted and confused after a few years of this.
Big thanks to purplepidjin for advice so far. A view from the inside and any advice is very very welcome. Also thanks to signet2012 Is there a place where these carerers skill requirment guidelines are published?

City & Guilds are the awarding body for the NVQs carers are encouraged to have.

The Care Quality Comission is the equivalent of OfSted for care homes etc

Residential care is a no no, tried living with other people and he didn't get along with them, that's why he was moved into hospital for assessment for 20 months. He needs constant reassurance due to anxiety and it has to be 1:1 care which they don't want to pay for, they just place staff in there who are new without any training on his disability. It saps all my energy....and it's bad enough trying to keep a job, run a home and take care of my own family, sorry to moan...it's a good job I have a supportive and understanding husband.

OP You are the sort of angel - mostly female - without whom the world would not run at all. All I can do is express my profound and very humble admiration and wish you all the best.

His last SW said he didn't know any family as involved as we are. The new service provider have said on more than one occasion how very lucky he is to have us and that no one else has anybody. I have thought about this and I can really understand just why people walk away from it, why they wouldn't want to be involved. Just taking time out for endless meetings, from which promises are made and nothing ever happens is bad enough without the day to day stuff. My Mum says it's a terrible shame that some are alone but it's OK for her to say that as she's passed the responsibility to me now and I feel bad as sometimes I feel resentful towards her for not 'sorting this mess' out years ago and leaving it to me. I could not do this to my daughter, nor would I want her to..

Andrewofgg, thank you but I really don't feel like any angel, I feel guilty mostly for resenting him for being such a burden to me and I hate myself for that.

His last SW said he didn't know any family as involved as we are.

maybe you are doing too much then, and thats why you cant cope

take a step back

I haven't visited him for about 3 weeks, my hubby has but I am just bombarded every day with emails, texts and phone calls from his support workers and SW I think it's just the intrusion of it that gets me down.

Sorry to be flippant (but I think it makes a point): isn't it your brother who's supposed to need the constant 1:1 reassurance, not his carers! It sounds like the staff need more help than the patients. Disturbing.

I don't have any advice to give, except that I know how tough this is. I have a cousin in similar circumstances, but living independently, to whom I am next of kin. He had all sorts of problems with doctors failing to take him seriously, and social services being patchy and would have had to go into supported accommodation had he not gone to a private psychiatrist. He's almost a different person now, and it was all down to being taken seriously by someone who was willing to listen. It was well worth the expense.

I hope you get through this, but, with respect, I think you ought to have more help from your family. 77 is not old these days and your mum should be capable of supporting you a bit better, in my view. Good luck.

Hi again. I have Pm'd you back oldermummy with some information that might give you a bit of a heads up on what to expect.

It sounds like the service provider isnt doing as they should be, they have little in place paperwork wise and the team isnt been managed effectively.

I have pm'd you the kind of things I would have in place for someone like your brother which may give you a better picture of if the care provider is doing the right thing or not.

I get a bit finger jolly when I go into work mode so apologies if its long and please message me back if you have anything your not sure about.

Its hard when you dont know the individual but I can certainly advise you on what should be there. The staff dont sound very confident at all.

Basic rule of first aid is to keep yourself safe so you can help others.

Same here, if you are going under with the stress and lack of boundaries you won't be able to help your brother. It's not selfish it's just human nature to need some head space from anxiety, sadness and neverending bureaucracy.

Practically - how about a separate mobile for personal calls and leave the old one for social workers, carers, your brother etc to use? That way you can turn the system OFF and have quiet time knowing the mobile will take voicemails and texts you can get back to the next day. If they find they don't get immediate replies from you it will also prompt people to be less dependent on your advice or thoughts.