kami, thats so bad, im sorry....I can understand now, why there are the difficulties. Im very surprised they sent him out of the unit so quickly. I was in a unit in the North of England and someone with the same level as your brother would be in for months.
I hope that there is still support for him from a specialist? There is equipment that he can use..He should have been fitted for a power chair and taught to use equipment that would enable his independence in some aspects.
He always has the right to live in his own home and he has the right to have carers live with him. I have a friend who has someone live with her 24 hours a day..She has her 12 year old daughter live with her and she is a complete injury and doing well.
No one will suggest all this unless you push it, if pushing becomes an effort and you get nowhere, im happy to help in any way..I am stubbornly determined! lol
Thank you wavewolf. Next time I see him I will see if they will let me change his mattress to a foam one, and will also ask about possibly getting him an auto turning bed. We are all trying to persuade him to let the staff put him in a chair! Nice dog by the way.
Thanks for understanding Lara. He did try out an electric wheelchair whilst in Stanmore but after 15 minutes trying to get the hang of it by steering with his head they gave up because he kept crashing into the wall! He does have a chair ready and waiting in his room but doesn't want to use it. They also offered an iPad but, again, he wasn't interested in learning it. We were told that he would never be able to go home - too fragile - so he has now sold his house. Instead of getting better since the accident, he has just got worse. It's so sad but thank you everyone for listening.
He's had a bad weekend with another chest infection and also was getting blood in his urine. They found this was due to a trauma after being re-catheterised. Both these problems seem to be sorted but now he is drifting in and out of sleep and is often unresponsive. When his friend went in this morning he wasn't speaking and this afternoon he is sleeping again. He was also left with no top on as his clothes are ALL in the wash. After a chest infection, this is hardly desirable, and I wonder how much longer he will survive and in my mind conspiracy theories are working overtime. I'm glad you find your iPad a good help DJ, I do too, but I fear for my brother it's just too late.
He's on antibiotics for the infection but I think they're giving him other drugs too which are making him like this, although they won't admit it. Same thing happened with my Mum when she had dementia.
He's on antibiotics for the infection but I think they're giving him other drugs too which are making him like this, although they won't admit it. Same thing happened with my Mum when she had dementia.
That's not good kami. Maybe he is better off leaving that place!
He's had a bad weekend with another chest infection and also was getting blood in his urine. They found this was due to a trauma after being re-catheterised. Both these problems seem to be sorted but now he is drifting in and out of sleep and is often unresponsive. When his friend went in this morning he wasn't speaking and this afternoon he is sleeping again. He was also left with no top on as his clothes are ALL in the wash. After a chest infection, this is hardly desirable, and I wonder how much longer he will survive and in my mind conspiracy theories are working overtime. I'm glad you find your iPad a good help DJ, I do too, but I fear for my brother it's just too late.
Did your brother opt for DNR or was that thrust upon him? If he is in his right mind, it should be his stated wish, not decision of institution.
Has your brother had any psychological or spiritual intervention/counseling? With such an injury, we need help in coping and this could be a major help to him.
Really sounds as if his care is substandard by many measures. Is there a chance of alternate care? Do not know where he is located or what kind of medical system there, but future looks bleak if there is not some true change in care and motivation for living.
kami,firstly, contact Stranmore spinal unit, its never too late, his care needs to be consultant led right now. The nursing home doctors will not be specialized enough to deal with SCI.
Does your brother have an indwelling catheter in? Is he drifting in and out of sleep because he is sedated?