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
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
