1. Emergency respite..again!!

    Posted by swissmiss at Mon Jun 11, 2012 5:37 pm

    So, what I have seen coming for weeks came..Ali became so determined to challenge and resist all attempts to calm or sleep that last night I had to call the police [my only emergency rescue plan] at 4.30am to calm him and get him to go to bed and to sleep. For weeks and weeks I have been not sleeping myself and putting up with him bouncing around all night but last night I reached that point again where I couldnt give another ounce to it and so couldnt calm him or keep him safe.
    So I emailed the SW, her manager, Mencaps advocate, the Psychiatrist and the WPC who helped us before and said i couldnt go on. It seems to be the only way to get their attention..no amount of warning and attempts to get them to put the package of regular support and respite in place seems to work.
    I also have an emergency meeting with the psychiatrist...well the useless one who was replaced in January but the replacement one who isnt much better is on holiday...and the totally useless "I cant do anything...you wont get that" community mental health manager tomorrow...unfortunately the Mencap advocate cant come so I dont hold out much hope of getting anywhere.
    Ali is happy to go to respite...a new home just up the road...for a week. I think he has Pathological Demand Avoidance syndrome...we realised his father had this a few years back. I dont know how I have coped...massive adjustment of my priorities..totally demanding that you focus on them and their needs...you only get your needs if you can discretely dovetail them into their programme. I didnt exist basically except as their carer. I think we are looking at him moving into paid care as I cannot keept he plates spinning the way he wants them...ie not needs them, wants them..and the wants are an ever changing set of goalposts. The vicar who came after Neil took his life listened to my account of our life and told me that whilst I basically had adapted to seeing this life I had caring for them as normal it was anything but!
    Looking forward to a few nights sleep and lucky me trying to catch up on all the benefits paperwork and probates which still arent done. What I need is a holiday!
    Karen x

  2. Re: Emergency respite..again!!

    Posted by swissmiss at Mon Jun 11, 2012 5:46 pm

    ...and a new brain! :-)

  3. Re: Emergency respite..again!!

    Posted by CrystalBlueWolf at Mon Jun 11, 2012 9:01 pm

    Hope you manage to get some sleep hun i know that feeling right now *hugs*

  4. Re: Emergency respite..again!!

    Posted by swissmiss at Tue Jun 12, 2012 10:03 am

    Hope today goes well for you and your hubby has his op. It had got beyond tiredness...eventually I freeze and any effort to rest and recover is futile and my nerves wont let me carry on either......I push myself t the limit and when it is getting close I start to warn them and they ignore me until I collapse and they have no option. Not ideal and cant go on.
    Karen x :-)

  5. Re: Emergency respite..again!!

    Posted by lynba2 at Tue Jun 12, 2012 10:52 am

    huggs karen hopefully you will get the help so you need this time but dont bank on it but try and rest as much as you can hun i know you are probably all still knotted up and cant really rest but try hun i know you probably think you have failed ali but you havent most of us would have gone under long ago with what you have had to put up with so it shows you are really a very strong person its just getting the powers that be to listen to you which an impossible task at the best of times lyn xxxxx

  6. Re: Emergency respite..again!!

    Posted by gaygal14 at Tue Jun 12, 2012 11:25 am

    Hi Karen,, thinking of you at this difficult time,, and hope that you can find time eventually to have a break, to just be yourself the person,,and not as the carer,,(((((hugs to you))) take care,, love Maggie xx

  7. Re: Emergency respite..again!!

    Posted by swissmiss at Tue Jun 12, 2012 12:48 pm

    Yes, well nothing has changed. They still dont have any interest in getting to the bottom of why he is suffering like this..its just drugs to sedate and telling me to give up on him thats on offer. I have no respect for the psychiatric services or social services. I really dont care what all their excuses are because until they have tried all they can to help instead of turning their backs on it they are not people worth respecting. I cant respect or live with myself if thats all I do for him. Way I see it if i was the Queen I would expect better and why should we accept third world treatment. I cant see the sense when the cost is peoples lives and increased cost to the state in residential care fees...why dont they want people to be supported and helped to live a life which meets some sort of 21st century 1st world standards???
    Karen x

  8. Re: Emergency respite..again!!

    Posted by lizbet at Wed Jun 13, 2012 6:58 pm

    hi Karen, what a rotten time you have had over the last few weeks, it's about time this respite was sorted once and for all chick. hope you manage some chill time and some much needed sound sleeps
    Liz xxx

  9. Re: Emergency respite..again!!

    Posted by swissmiss at Thu Jun 14, 2012 5:59 pm

    Thanks. I feel significantly better after 3 nights uninterrupted sleep...got a hint of how it feels for non-carers! Ali slept through from 11.30 last night apparently....picked him up from his media club at 3 and took him out for tea. Third day they havent put his belt on so had to buy him one as his trousers kept falling down..he still hasnt had a shave and his hair is greasy...thats what you pay £1200 a week for??? I complained...profuse apology...some excuse of a medical emergency today...glad I complained rather than just bring him home and do it myself. He is happy there though so all is not lost.
    Needless to say no call from his SW yet so goodness knows where we go next week and all the rest of our lives?
    Karen xx

  10. Re: Emergency respite..again!!

    Posted by PositivePolly at Sat Jun 16, 2012 10:04 pm

    Oh Karen I know exactly how you feel,,I have been there so many times before,,,When I asked for help the Authorities sectioned my son telling me that they needed to do this as they had no respite facilities available accept a hospital setting,,,One month it was meant to be for but the doctor barred my son coming out,,,for 15 long months,,,,I had just one chance to get him out and it was a terrible experience for him more than me,,,,He has complex partial seizures as well as severe autism but they would use P.A.LO.V.A. restraint during his forced hospital stay,,,During the stay he was allowed home leave but of course didn't want to go back to the hospital ,,,,They sent riot police to pull him out of his room at home on one occasion and on another they handcuffed him to an ambulance trolley,,,
    5 years he's been out of hospital,,,and his package has never been right,,,,You see and as you know it's the lack of support that courses a breakdown of care,,,Too many hrs,,,My son has no social worker nor can I get one,,,These days I am scared to ask for assistance because I always have that fear they will section my son not for mental illness as he hasn't got that but me needing help,,,It's hard on your own,,,,
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