A very sad up date. My brother was allocated a social worker, she couldn't do sign language but as my brother is used to a world where people don't speak his language, that wasn't too bad. Unfortunately, she was part time, a strange choice for such a vulnerable person, as she was only available a couple of days a week and never got back to me after any messages were left.
We got off to a bad start, she had read the notes saying that I had refused to have a team of strangers going into his house four times a day to change his pad, pick him up if he had fallen, get him his meals, we didn't need that, we as a family looked after him till he needed full time care then he moved into my sisters home while we waited for a nursing home place. Because I had refused their offer of him going back to his flat and them sending people round, she decided he didn't deserve care.
She insisted that because it didn't say terminal on his notes, then I must be lying about how ill he was. I had read the National framework for Continuing Care and requested his assessment, she refused him one saying he wasn't ill enough and didn't meet the criteria to even get an assessment, though she has still not sent us the results and reasons in writing.
After many weeks the district nurse finally turned up, with the social worker, the delay was caused by the SW being part time. DN insisted if hes as ill as I said he should go straight into hospital or at least see a GP, she made a big fuss about how was he going to eat during the 4.5 hours my sister and I were about to go to work for. They said he could go to an assessment unit if a GP was sent for and agreed there was a need.
Duty GP came out, no idea about him or condition, said he was fine. That was on the Monday, I took him to see his own GP on the Tuesday, and she said he should be in a nursing home and wished me luck with it.
ON the Friday he reached the stage of not being strong enough to take the few steps from wheelchair to bed, even with my sister and I trying to part carry him. Due to lymphedema and ascites his legs were up to about 7 stone each and he was barely mobile. The locum Dr came again, while he was laying on the floor, we just couldn't lift him into the bed, and he was too weak to help. I had already called an ambulance, we were just waiting the 4 1/2 hours for it to come. In hospital they quickly assessed he had very little time left to live, which I had been able to see myself for weeks, and the reason for trying to get him into a nursing home. He had a fast track assessment for continuing care which was allocated but was now too ill to travel to a nursing home, and no hospice space was available. SW phoned me on the Monday, a week after she was still insisting he wasn't ill enough to even have an assessment, and after having refused him a Specialist Deaf Blind assessor, (his legal right to have one). In her phone call she tried to suggest his having had a sudden worsening and a 'fall' were the reasons for his hospitalisation, not the kidney and liver failure he was dying from. Sadly his last days were spent on a busy ward with a demented patient in the bed opposite shouting out "for gods sake hurry up and die, and do it quietly" and other even worse obscenities throughout the nights, as my brothers lungs filled with fluid and he was coughing. I stayed at my brothers bedside, day and night, 3 days and nights before a side room became available, and I stayed for the remaining 2 days and nights with him, there, untill he died on the Thursday morning. It was so traumatic, a terrible strain on the nursing staff on the first ward, it was so wrong, he shouldn't have been there to die.
I had previously found a lovely nursing home, where he would have had his own room, care for his legs which were oozing lymph and splitting into open wounds for weeks before he died, and most of all they had staff that could communicate in sign language. I feel so angry that a know it all but knows nothing social worker had the power to deny him that, to basically call me a liar because what I said wasn't written in his notes, that I was exaggerating his illness, and because I wouldn't go along with her idea of care, would get no help. I miss him dreadfully, but mostly I feel I let him down because I couldn't get him the help he needed.
You and your sister are to be comended for all the care and stress yo have both been through. I hope you both can have some well earned rest to get over all of this . Be kind to yourselves.