@Jackie66 i will look up Lewis bodies.thats ok if your happy where he is thats ok. I just know that people have to listen to the families wishes when people are very poorly. They don’t do ,but they are supposed to do. As long as they’re doing what you wish that is ok.
Have you got the CHC for his care. If not ring the integrated care board for checklist and assessment. I did not know you were unwell sorry. Low and worn out from all this but I did not know you needed to see psychologist and psychiatrists im sorry that you are suffering. So he has been in bed quiet along time . I wish they could do something. Are they a lot better in that home.is he in a care home or nursing home. I hope they are treating you better and him better.
@Jackie66@bowlingbun
Jackie66. I’m very sad to read your husband has Lewy Bodies dementia.
My husband didn’t suffer with that one , he had vascular dementia strokes and other health issues. So I am unable to advise. My husband was in a nursing home and one of the other residents suffered with LB. I believe she had Parkinson’s with it. Her partner had it tough. My heart goes out to you
Im not happy that hes in bed but he cant be hoisted anymore due to his legs they are bending up and he cant seem to straighten them. What i dont like is i dont think hes sat and talked to when im not there im going to try and ask about that tomorrow but if hes left alone apart from 2 hrly checks it doesnt seem fair. He has radio on. Its hit me since he became ill more so with low mood and i got very ill at Christmas i dont know how im going to be the further along he gets. The staff are mostly very nice but deep down i want him home but i couldnt cope and cant afford round the clock carers.
Ive not tried to reapply for CHC but i will see this week. Being unwell myself is making things more difficult i tried so long with cqc etc about the safeguarding issue and social worker wasnt sympathetic at all im waiting for a new one to get in contact. Its very wearing
He is in a care home yes and been nursed in bed for couple months i think now he was sitting in lounge but he leans alot and his head drops forward so they decided bed rest is best. I am still angry regarding the lack.of physiotherapy, the hospital.discharge team said going back to the care home after his infection and stopping being able to walk would be his best chance. But they hadnt set up a plan for him and i kept pushing gp and calling people but physios didbt visit for ages and by time they did he was worse. They needed care home to get a rotunder and that took more weeks theres been poor communication from start.
Inam considering writing to the ombudsman but i dont really know what they will do now
Thankyou John has what is called Parkinsonism which is the trembling and if he could walk still that would be affected, he is nursed in bed now but i get the feeling theres still an awareness as he is bored and ive mentioned it to one of the carers who says she will sit and chat to him. Its a horrible illness and i feel very helpless i cannot seem to cope very well living alone im overwhelmed with it all
Jackie, I was widowed suddenly when I was 54. We ran a business together, did everything together, so learning to live alone took a long time. I found a book called Starting Again by Sarah Litvinoff very helpful. Although primarily written for divorces, it has lots of ideas to help you decide how to find a “new” life. It’s easy to read, about £4 on eBay as a rule.
Thankyou very much i will see if i can get that book then, its hard isnt it when you have lived with someone for such a long time, im not sure i will ever like living alone now
It takes a very long time, so don’t be too hard on yourself. The next few months will be like “treading water”. Gradually looking at things in the house that will never be used again and thinking what to do with them now? I found it easier to give things to the Salvation Army or similar, to someone who really needs them. Spring is a lovely time of the year, everything is blossoming, growing, but so are the weeds! I was disabled in a car accident soon after my husband died and had to make some very tough decisions about the garden, half an acre! Gradually 40 year’s work had to be destroyed. It’s been flattened, even the apple trees have gone, but it’s very low maintainable now, and I can sit on my patio peacefully without looking at endless jobs. Maybe start a list of what annoys you / worries you most about the house and think about how you can fix it, or new skills you need, or who you can ask to do things you will never master? Is there a room in the house that needs redecorating? I found interior decorating very therapeutic, sadly I’m too disabled to do much now. I found evenings desperately lonely to start with, so I tried to go out during the day and do jobs, cleaning, paperwork in the evening.