Hello, friends,
I know many of you have been through this journey. I hesitated to put my experience on here because I thought I'd have nothing to say that many of you haven't said already.
Mum has been ill for a long time and lives with my brother in her home. He has schizophrenia so I've always been there for them both.
The last 12 months or so I have cared for my Mum using a 'personal budget' ie direct payments made by social services which enabled me to employ carers of my own. It was all going well till the last few months, when she has deteriorated quite rapidly.
In November she set her hair on fire while smoking a cigarette so I employed an extra carer to help me 'ration' her cigarettes and give me some time off from running up and down there every hour to give her a ciggy.
She became urinally incontinent, wetting the bed at night and less and less reliable in the day. She would get the urge to go to the loo, then forget why she had got up and get into bed and wet it.
I increased the care again so that there was someone there to prompt her to use the loo in between ciggy breaks, which by then had lengthened.
This all was impacting on my brother, who dealt with the situation by going out all day. The carer would come in 1st thing and he would be desperate to leave.
About two weeks or so ago, Mum started calling out for him and me during the night. My brother would hear her up till about midnight and was able to settle her. She was always terrified, but couldn't say what the problem was, so we decided to distract her as the best way to deal with that. My worry was that she would be calling later in the night and my brother wouldn't hear her because the drugs he has to take for his schizophrenia really knock him out. The thought of her being terrified with no-one to reassure her was tearing me apart. It wasn't doing my brother much good, either.
I had hoped we could have kept Mum at home to the very end but on Monday last I had to make the painful decision to get her some respite for the 4th time. She has never really settled in respite, just accepts it in the hope she will return home.
This time she has a bed in a new local authority home. It's a wonderful place with en-suite shower rooms, plenty of staff, meals almost on demand and (real luxury for Mum) a smoking room!
I have been offered this as a permanent thing if I want and Mum seems to be settling well. I've been advised not to visit for a week to allow her to settle. That's been hard, but I've phoned every day and she is fine.
My only problem is one of my sisters. She has never come to terms with the fact that Mum has dementia. She thinks it's 'just old age.' She is angry with my brother for not coping with her demands. He's 'just a spoiled brat.'
She says the house where Mum and Dad lived just won't be the same. Mum won't be there.
I explained that we are lucky. My brother will be allowed to live there still, most people in our situation would have to sell the house to pay for care.
She's upset that she didn't get the chance to look at the home before Mum went in. As it's LA we wouldn't haave had that chance anyway as it's SS referral only, but it's a better home by far than the best of the ones I've looked at and there's no top-up (which none of the family were prepared to finance and I only have DLA of £19 something per week of my own).
The SW will ring me on Tuesday for a decision on the bed. I don't want to lose it but I want to try and keep sis on side if I can. I know it's an impossible situation and I can't please everyone but I'm hoping she will go and see the home at the weekend and be blown away by it and solve all my problems.
If not, I'm going to be in the doghouse on Tuesday cause I'm not letting Mum lose the chance of a lovely old age.
Can anyone advise what they did about distressed siblings in similar circumstances?
Any advice on how to deal with telling Mum, or not telling her, that this will be permanent and she isn't going back home?
I know many of you have been through this journey. I hesitated to put my experience on here because I thought I'd have nothing to say that many of you haven't said already.
Mum has been ill for a long time and lives with my brother in her home. He has schizophrenia so I've always been there for them both.
The last 12 months or so I have cared for my Mum using a 'personal budget' ie direct payments made by social services which enabled me to employ carers of my own. It was all going well till the last few months, when she has deteriorated quite rapidly.
In November she set her hair on fire while smoking a cigarette so I employed an extra carer to help me 'ration' her cigarettes and give me some time off from running up and down there every hour to give her a ciggy.
She became urinally incontinent, wetting the bed at night and less and less reliable in the day. She would get the urge to go to the loo, then forget why she had got up and get into bed and wet it.
I increased the care again so that there was someone there to prompt her to use the loo in between ciggy breaks, which by then had lengthened.
This all was impacting on my brother, who dealt with the situation by going out all day. The carer would come in 1st thing and he would be desperate to leave.
About two weeks or so ago, Mum started calling out for him and me during the night. My brother would hear her up till about midnight and was able to settle her. She was always terrified, but couldn't say what the problem was, so we decided to distract her as the best way to deal with that. My worry was that she would be calling later in the night and my brother wouldn't hear her because the drugs he has to take for his schizophrenia really knock him out. The thought of her being terrified with no-one to reassure her was tearing me apart.
It wasn't doing my brother much good, either. I had hoped we could have kept Mum at home to the very end but on Monday last I had to make the painful decision to get her some respite for the 4th time. She has never really settled in respite, just accepts it in the hope she will return home.
This time she has a bed in a new local authority home. It's a wonderful place with en-suite shower rooms, plenty of staff, meals almost on demand and (real luxury for Mum) a smoking room!
I have been offered this as a permanent thing if I want and Mum seems to be settling well. I've been advised not to visit for a week to allow her to settle. That's been hard, but I've phoned every day and she is fine.
My only problem is one of my sisters. She has never come to terms with the fact that Mum has dementia. She thinks it's 'just old age.' She is angry with my brother for not coping with her demands. He's 'just a spoiled brat.'
She says the house where Mum and Dad lived just won't be the same. Mum won't be there.
I explained that we are lucky. My brother will be allowed to live there still, most people in our situation would have to sell the house to pay for care.
She's upset that she didn't get the chance to look at the home before Mum went in. As it's LA we wouldn't haave had that chance anyway as it's SS referral only, but it's a better home by far than the best of the ones I've looked at and there's no top-up (which none of the family were prepared to finance and I only have DLA of £19 something per week of my own).
The SW will ring me on Tuesday for a decision on the bed. I don't want to lose it but I want to try and keep sis on side if I can. I know it's an impossible situation and I can't please everyone but I'm hoping she will go and see the home at the weekend and be blown away by it and solve all my problems.
If not, I'm going to be in the doghouse on Tuesday cause I'm not letting Mum lose the chance of a lovely old age.
Can anyone advise what they did about distressed siblings in similar circumstances?
Any advice on how to deal with telling Mum, or not telling her, that this will be permanent and she isn't going back home?
