meeting advice with hospital and SW

[chip]

i have a meeting on Friday at the day hospital. The Social Worker is going as well. To put you all in the picture this is what's been happening. I am libile to take Sw to the cleaners at it.
My husband was in respite only for the weekend. I got him home and he went tearful, angry etc saying why me why is it always me. Day hospital called a meeting and has brought in the Social Worker as well. Day hospital phoned the Social Worker and arranged it. I tried to phone Social Worker and a day later she phoned me and did say the Day hospital had told her. She also said that she was worried about my and his safety ? Well if she was worried she would come and see us did she what. She couldn't be that worried as that was early last week and the meeting is this Friday coming, she also hasn't phoned again. I have also been at her for 6months to up the Direct Payments so i could get a PA to help as 10hrs a week is of no help, getting a PA is cheaper than agency as well and is more suited as you get the same person, but she will not listen.
My husband has since settled. My problem is he loves attention and i cant give it 24/7 as i care on my own thats why i need a PA his advocacy says that as well. It also looks like he doesn't like being away from home for respite but if i can get care in this would help a lot and let me work as well as they are trying to stop me. I have to phone the Scottish Exec on Tuesday about the Direct Payments i really hope i dont get told as per usual see your Social Worker. (Who is of no help and doesn't listen ) His advocacy and the LCIL are going to the meeting as well Princess trust were going to go as well but cant now but i have their support. I'm getting to the stage of threating to get a lawyer. Do i do this as well? I'm sick of this awful system. I care for my husband for 159hrs a week that works out at 29p an hour carers allowance.We also have to pay out £464 a month for income tax, council tax and the amount we have to pay towards the 10hrs care respite is above this as well. Sorry about the long moan but i am so angry about it all.
A very angry Chip

 

[Grannie G]

Dear Chip,

I can see how angry you are. You sound as if you are ready to explode.

But

Can I ask you not to be so angry when you go to the meeting.
Can I ask you to write down all your grievances as simply as you can, so you won`t forget anything, and you won`t repeat anything.
Can I ask you to let the `professionals` speak first at the meeting, so you can hear what their opinion is.

Then you can put your point of view, tell them how you feel and ask what they can offer you in the way of help.

I hope you don`t think I`m interfering. This is just my feeling for you, and knowing that when you are really angry, emotion takes over and sometimes does more harm than good.

Good luck. Please let us know how you get on.

With love

 

[Nell]

I hope you don`t think I`m interfering. This is just my feeling for you, and knowing that when you are really angry, emotion takes over and sometimes does more harm than good.

Dear Chip,

This is very good advice - from one who knows! When I am really upset, angry, distressed - I cannot think straight. I get over-emotional and irrational. I blame indiscriminately and cannot listen to others.

Maybe I am alone in being so ineffective when I'm upset - but I don't think so!!

Please sleep on your distress.
Do as Sylvia says, and make a list.
Hear what the professionals say - then challenge them if necessary.

If you come across as very angry, it may not result in the best outcome for you and your husband.

Having said all this, you have every RIGHT to be angry and upset. I also know that what I've written is easier said than done.

Please know I'll be thinking of you and sennding you good wishes to remain strong and clear in your meeting.
Every best wish from Nell.

 

[chip]

Thanks Neil and Sylvia,
I have back up as well so it should help and also been told carers have legal rights and shouldn't be taken for granted. I will remain calm learned to cover up a lot when my Mum had Dementia. I phoned the Day hospital as well today and was told they don't understand Social Services, or how i've been assesed as needing 10hrs by Social Services and 21hrs by the independant fund. They also agree with me that getting the same carer in is better for suffers of Dementia, so this getting a PA with the ILF and agency with the Direct Payments is wrong and stupid. I am also going to tell the SW that i am going to have to give up the respite as well as they haven't informed me of cost AND THATS GOING BACK TO LAST YEAR. I don't know if i can pay it now. I know need a PA urgently. Battle starts tomorrow with a phone call to the Scottish Exec to find out all about the Direct Payments and tell them what hold the Social Services are putting on us with it. I will be so glad when this week is over and hope i win. Carers should not have to do all this. Just as well i'm very strong and will not give up. I really feel for the carers who can't or who are ill because of the system.
If a group of us got together all who could get a PA if we looked after each others cared for person at least we would get paid as long as we weren't related or lived in the same house at £8.30 an hour this is better than carers allowance and we are employed also if it was in a group all carers would get time off. And we would be getting paid from the government. System really hasn't been thought about.

 

[Nell]

Dear Chip,
Great to hear you sounding so strong and powerful! You are obviously ready to do what has to be done - will be thinking of you and wishing you the very best of luck. Nell