Hi everyone, haven’t been on here for a while. I don’t know where to start, my husband’s MS has worsened over the past 6 months, he has PPMS, diagnosed 9 years ago. He needs to be hoisted now most of the time, some days he is able to use the stedy. It’s the fatigue that’s hard to deal with. He sometimes sleeps all day, but is always awake from 6pm onwards, it’s as if his body clock is out of zync. He has carers 5 times a day, I go to work 3 days a week but the rest of the time it’s just me, we don’t have any children. I’m getting more and more depressed as we don’t have a life any more and I suppose I’m grieving for my old life. I know I sound selfish, that it’s all about me but I only want the best for my husband. Things came to a head over the weekend, the carers were not happy with his recliner as he had slipped down one night, I told them it’s only because he was soaked through. He wears pull up pants. To cut a long story short, they refused to shower him, from Saturday until Tuesday, bed wash only. They refused to hoist him to the commode and refused to hoist him to the wheelchair for me to take him out. We like to go shopping and fir a coffee on a Saturday, I had to get my brother to help me get him to his wheelchair. I was so angry, I reported them to the out of hours, nobody called me back. The OT came out on Tuesday and told them exactly what they had to do. I have taken it further now with someone higher up in the local authority. We’ve had no explanation as to why he was treated this way, they have made him worse, we’ve had to move him downstairs now in a hospital bed, to make it easier for them. I feel so angry with how he is being treated, they are supposed to take him out in the afternoons, they are here for an hour and a half, they keep saying he’s sleeping, they couldn’t take him, funny how he’s awake when i’m home! I’ve really had enough if them now but I need to work as we need the money, and also for my own sanity. Rant over, I feel better now
Do you not get self directed care that you can choose the carers and the council pay for it?