This probably ought to go in the Family posts, but I'm really just thinking aloud, and it helps to sort things out in my brain by writing it down.
Many of you know about Clutterbug, my very poorly, 69 year old, learning-disabled, brother. Well, just recently he, and I, are having a difficult time. He's in a lot of pain now, not because of the lymphoma (which is obviously an on-going problem and does cause him some pain and other symptoms), but because of severe spinal arthritis (aggravated by the steroids he's takes because of the cancer), which has pushed his back into an S-shape, and which causes him to walk with one hip much higher than the other. His mobility is very poor, and he uses sticks, or a frame, to get about He's becoming very distressed about his situation, and is constantly pulling the emergency cord in his flat...not because he's fallen (although sometimes he has), or because he feels really ill, but because he's alone and scared, especially at weekends, when there is only a skeleton staff on call. The Paramedics are beginning to complain about him wasting their time, but the people on-call are duty bound to call them out if my brother requests that they do, so it's a vicious circle.
In addition to his reduced mental age, he also has a personality disorder, which causes all sorts of problems with people he comes into contact with. He's often bullied and ridiculed...and emotionally he's now far from good. He's been phoning me day, and night, for several days now, either in a rage, or in floods of tears.
He lives over 150 miles away from me, and has no other family. He has a support network where he lives; a very good GP, a lovely Housing Warden, and a Support Worker, but the Social Services keep moving the goal posts, and they say he has 'capacity' to make his own decisions, so when he says that he doesn't want them to help him, they withdraw their services...instead of realising that he's simply not able to make that sort of decision, and helping him anyway.:(
I'm beginning to find the situation almost intolerable. It's causing me so much stress. I'm permanently on the phone to him, or his Doctor, or the Social Services or the Warden, and hearing the fear, and the loneliness, in his voice is breaking my heart.
I've reached the point where I think that the best thing to do would be to have him transferred here. His accommodation is run by a Housing Association, and they do have sheltered flats/supported accommodation in this area. The problem is that he's currently in a little seaside town, so moving him to this area would be a real culture shock for him (although he was born here and lived here until his twenties). It would just be so much easier for me if he were local. Trying to arrange his care, by phone and email, from over 150 miles away is almost impossible.
I simply dont know what to do for the best. Do I try and carry on as we are? Or do I set the ball rolling and try and get him moved here? Asking him what he wants isn't really going to be helpful. He doesn't have a clue what he wants...or needs.
I had a long talk with Mr R about this today, but I'm still confused. I'm sorry to ramble on, ladies, but does anyone have any thoughts?
A Big Decision...and I Need Help to Make It
Many of you know about Clutterbug, my very poorly, 69 year old, learning-disabled, brother. Well, just recently he, and I, are having a difficult time. He's in a lot of pain now, not because of the lymphoma (which is obviously an on-going problem and does cause him some pain and other symptoms), but because of severe spinal arthritis (aggravated by the steroids he's takes because of the cancer), which has pushed his back into an S-shape, and which causes him to walk with one hip much higher than the other. His mobility is very poor, and he uses sticks, or a frame, to get about He's becoming very distressed about his situation, and is constantly pulling the emergency cord in his flat...not because he's fallen (although sometimes he has), or because he feels really ill, but because he's alone and scared, especially at weekends, when there is only a skeleton staff on call. The Paramedics are beginning to complain about him wasting their time, but the people on-call are duty bound to call them out if my brother requests that they do, so it's a vicious circle.
In addition to his reduced mental age, he also has a personality disorder, which causes all sorts of problems with people he comes into contact with. He's often bullied and ridiculed...and emotionally he's now far from good. He's been phoning me day, and night, for several days now, either in a rage, or in floods of tears.
He lives over 150 miles away from me, and has no other family. He has a support network where he lives; a very good GP, a lovely Housing Warden, and a Support Worker, but the Social Services keep moving the goal posts, and they say he has 'capacity' to make his own decisions, so when he says that he doesn't want them to help him, they withdraw their services...instead of realising that he's simply not able to make that sort of decision, and helping him anyway.:(
I'm beginning to find the situation almost intolerable. It's causing me so much stress. I'm permanently on the phone to him, or his Doctor, or the Social Services or the Warden, and hearing the fear, and the loneliness, in his voice is breaking my heart.
I've reached the point where I think that the best thing to do would be to have him transferred here. His accommodation is run by a Housing Association, and they do have sheltered flats/supported accommodation in this area. The problem is that he's currently in a little seaside town, so moving him to this area would be a real culture shock for him (although he was born here and lived here until his twenties). It would just be so much easier for me if he were local. Trying to arrange his care, by phone and email, from over 150 miles away is almost impossible.
I simply dont know what to do for the best. Do I try and carry on as we are? Or do I set the ball rolling and try and get him moved here? Asking him what he wants isn't really going to be helpful. He doesn't have a clue what he wants...or needs.
I had a long talk with Mr R about this today, but I'm still confused. I'm sorry to ramble on, ladies, but does anyone have any thoughts?
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