I have tried several times to start this thread but each time I end up going on and on and writing a book instead of a post and crying all the time.
Still got the crying going on. I'll try and keep it short. I think he started suffering from dementia in about 2006 but he refused to accept that anything was wrong. He wasn't officially diagnosed until February 2013, when he was quite bad and eventually I persuaded him to go to the doctors. When he had the memory test, and the doctor said that he was immediately going to cancel his driving license and that he scored so low (8) on the test there was no medication that would help him. I then contacted the social services and the alzheimers society for advice. I had visits from the SW, AS and the CPN, and he was always fairly ok on their visits, but the only help that was offered was carers coming in twice a day but that wasn't the sort of help I needed - he needed watching and helping when I wasn't there, not just flying visits. In the end I had to video him on one of the difficult nights to show them how difficult he could be.
Another blow was that in May 2013 I was diagnosed with breast cancer and had to have a mastectomy in June, chemo from August to December and a lymph node op in January 2014. I didnt have radiotherapy as my surgeon thought it wasn't necessary as my lymph nodes were clear, and I couldn't have left my OH every day for 3 weeks. OH never did understand what was going on with me - still doesnt.
I found it increasingly difficult to cope with his erratic behaviour and the "sundowning" which was originally in the evenings but then was all day. He used to bring some of his clothes from the bedroom and beg me to take him home and then he would go off anyway - even in the middle of the night. He even climbed out the window in the night when the door was locked, and a neighbour coming back from a shift had to wake me up at 2am to let him in. He alternated between insisting he had to go home and on the other hand telling me to get out of his house as I wasn't his wife. I suppose the wig and the scarf when I wasn't wearing the wig might have made him think I was a different person. He was also getting quite aggressive with me, but he could never remember afterwards.
In June 2014 the social services sent an assessment team out and he was sectioned but the horror of that day haunts me - he went quietly enough in the car of an aide of the CPS he had a good relationship with, but I felt worse than I had ever done when he was aggressive with me. He was not cognitively aware enough to take another memory test, but after a brain scan it was confirmed that he had alzheimers and some vascular dementia. I wanted to have him home again after the section had finished, but they said I wouldn't cope and put him on a DoLs as he was very aggressive when it came to personal care. He was assessed as being eligible for CHC, and as I couldn't find a home that had a vacancy that would take him due to his aggression, he was in the hospital unit for 4 months. Out of desperation to get him out of there, I placed him in the only nursing home that accepted him, realised after 1 week that it was no good, (even though it was on the list of homes receiving CHC funding) and I searched for better homes but they all had long waiting lists. Eventually 4 months pleading and letter writing and phoning, saying that I would have to take him out of that home and back to live with me, the CHC pulled some strings and got him into a really good care home at the end of January.
The home is as good as it can be, with kind, gentle carers. It has free access to the courtyard garden and I can take out dog in and I take him out for meals and outings but always he wants to come home, although thats what he always said when he was at home. He gets quite distressed sometimes -he hates the other residents coming near him and has hit out at 2 of the male residents. He mostly spends his time sitting alone in the corridor or in the dining room when others are in the lounge. He says to me, in his more lucid moments - that "these people aren't right and I just want to be with you" When I am there visiting, and he gets in one of those moods, I have to sneak out while he is wandering the corridors and then I cry all the way home. The carers say he's fine when I'm not there - he thinks he is there doing work, as he was a builder, and he thinks he built it. He also sometimes thinks that I live there with him.
Now, as I said in my original thread - they want to give him an anti-psychotic drug to try and calm the aggression down. After reading everyone's posts and reading the excellent book by Graham Stokes "And Still The Music Plays" I am so worried about this, and I wish I had discovered this forum and that book before I got desperate - I might have been able to manage at home. I am crying so much thinking I have let him down.
He was so adamant that he never wanted carers in the house (as there was nothing wrong with him), but I wish now that I had tried that option first, but would a carer have been able to cope with the aggression he had when he was determined to "go home"
And why do they have to shower him every other day anyway - he went 2 weeks between showers at home sometimes - when I felt he had to have one I had to plead and cajole and promise rewards until he showered - it took hours sometimes - but no way could I have forced him. He is such a private man, that it must horrify him to be forcibly restrained while someone takes off his clothes - I cant think that any drug will stop him feeling as if he has been violated. They say afterwards he is pleasant and happy and can't remember being aggressive.
I cant remember the name of the drug they are going to give him - sulpiride was mentioned but I read its not suitable for people with dementia - the doctor today mentioned a drug beginning with R -cant remember exactly what it was called - I will ring tomorrow and find out
Sorry about the long post - I felt it might clear my head to write down a bit of my story about this terrible disease
Still got the crying going on. I'll try and keep it short. I think he started suffering from dementia in about 2006 but he refused to accept that anything was wrong. He wasn't officially diagnosed until February 2013, when he was quite bad and eventually I persuaded him to go to the doctors. When he had the memory test, and the doctor said that he was immediately going to cancel his driving license and that he scored so low (8) on the test there was no medication that would help him. I then contacted the social services and the alzheimers society for advice. I had visits from the SW, AS and the CPN, and he was always fairly ok on their visits, but the only help that was offered was carers coming in twice a day but that wasn't the sort of help I needed - he needed watching and helping when I wasn't there, not just flying visits. In the end I had to video him on one of the difficult nights to show them how difficult he could be.
Another blow was that in May 2013 I was diagnosed with breast cancer and had to have a mastectomy in June, chemo from August to December and a lymph node op in January 2014. I didnt have radiotherapy as my surgeon thought it wasn't necessary as my lymph nodes were clear, and I couldn't have left my OH every day for 3 weeks. OH never did understand what was going on with me - still doesnt.
I found it increasingly difficult to cope with his erratic behaviour and the "sundowning" which was originally in the evenings but then was all day. He used to bring some of his clothes from the bedroom and beg me to take him home and then he would go off anyway - even in the middle of the night. He even climbed out the window in the night when the door was locked, and a neighbour coming back from a shift had to wake me up at 2am to let him in. He alternated between insisting he had to go home and on the other hand telling me to get out of his house as I wasn't his wife. I suppose the wig and the scarf when I wasn't wearing the wig might have made him think I was a different person. He was also getting quite aggressive with me, but he could never remember afterwards.
In June 2014 the social services sent an assessment team out and he was sectioned but the horror of that day haunts me - he went quietly enough in the car of an aide of the CPS he had a good relationship with, but I felt worse than I had ever done when he was aggressive with me. He was not cognitively aware enough to take another memory test, but after a brain scan it was confirmed that he had alzheimers and some vascular dementia. I wanted to have him home again after the section had finished, but they said I wouldn't cope and put him on a DoLs as he was very aggressive when it came to personal care. He was assessed as being eligible for CHC, and as I couldn't find a home that had a vacancy that would take him due to his aggression, he was in the hospital unit for 4 months. Out of desperation to get him out of there, I placed him in the only nursing home that accepted him, realised after 1 week that it was no good, (even though it was on the list of homes receiving CHC funding) and I searched for better homes but they all had long waiting lists. Eventually 4 months pleading and letter writing and phoning, saying that I would have to take him out of that home and back to live with me, the CHC pulled some strings and got him into a really good care home at the end of January.
The home is as good as it can be, with kind, gentle carers. It has free access to the courtyard garden and I can take out dog in and I take him out for meals and outings but always he wants to come home, although thats what he always said when he was at home. He gets quite distressed sometimes -he hates the other residents coming near him and has hit out at 2 of the male residents. He mostly spends his time sitting alone in the corridor or in the dining room when others are in the lounge. He says to me, in his more lucid moments - that "these people aren't right and I just want to be with you" When I am there visiting, and he gets in one of those moods, I have to sneak out while he is wandering the corridors and then I cry all the way home. The carers say he's fine when I'm not there - he thinks he is there doing work, as he was a builder, and he thinks he built it. He also sometimes thinks that I live there with him.
Now, as I said in my original thread - they want to give him an anti-psychotic drug to try and calm the aggression down. After reading everyone's posts and reading the excellent book by Graham Stokes "And Still The Music Plays" I am so worried about this, and I wish I had discovered this forum and that book before I got desperate - I might have been able to manage at home. I am crying so much thinking I have let him down.
He was so adamant that he never wanted carers in the house (as there was nothing wrong with him), but I wish now that I had tried that option first, but would a carer have been able to cope with the aggression he had when he was determined to "go home"
And why do they have to shower him every other day anyway - he went 2 weeks between showers at home sometimes - when I felt he had to have one I had to plead and cajole and promise rewards until he showered - it took hours sometimes - but no way could I have forced him. He is such a private man, that it must horrify him to be forcibly restrained while someone takes off his clothes - I cant think that any drug will stop him feeling as if he has been violated. They say afterwards he is pleasant and happy and can't remember being aggressive.
I cant remember the name of the drug they are going to give him - sulpiride was mentioned but I read its not suitable for people with dementia - the doctor today mentioned a drug beginning with R -cant remember exactly what it was called - I will ring tomorrow and find out
Sorry about the long post - I felt it might clear my head to write down a bit of my story about this terrible disease
Hindsight gives us 20/20 vision, but often we forget just how tough things were at home.
