Just a bit of a rant to get a load of things out of my head. I thought I would start a diary thread as I've seen other people do, rather than start different threads all the time. Not sure if this is the right forum for that, so please feel free to close/move if not. This is long, so don't feel obliged to read or comment! Its more about getting it out.
So. Feel like I/we are stuck in a bad day that's never ending. Our situation is my mum (74) has Alzheimers, she was diagnosed 4 years ago and I feel like she's gone downhill very quickly since. She doesn't communicate much anymore. She might say yes or no or the odd couple of words, very rarely really makes sense. She can't feed herself anymore, we have problems getting her to open her mouth to eat but when she does she chews and swallows okay. She's doubly incontinent. Spends a lot of time sleeping now. On top of everything else she is being assessed for Parkinson's disease, which is looking pretty likely she has as she's got a tremor which comes and goes and is now also having balance problems and rigid muscles which I think is called a parkinsonism.
My dad is her full time carer. He is 78. I help if I can but I work full time and have a 4 year old so can't be here full time. Also, if I'm honest, I'm definitely not cut-out for this job! I feel overwhelmed by it and stressed over it and I'm not even the 'proper' carer. Anyway my dad was reaching a crisis point where he felt he couldn't cope either. SS got involved and 2 weeks respite care was arranged, which went okay really - as okay as it could be. Mum came home on Tuesday. Things were okay at first but then on Thursday she started having mobility problems out of nowhere, like someone had flicked a switch. I don't know if that's down to the Parkinson's or dementia or both perhaps. Before she could shuffle-walk about okay, even if she didn't always want to go where you were trying to take her!
Thursday morning my Dad rang and said Mum had fallen (flopped down on the floor) and he couldn't get her up. My daughter wasn't at pre-school that day so we rushed round but by the time we got there, he'd got her up again. All was okay but then Thursday night she had another fall and banged her head this time. Again Dad couldn't get her up so I went round and we managed to get her up again ourselves (though I was close to ringing for an ambulance!) and to bed. Friday morning - another fall. Again we managed to get her up.
We called social services for help and the woman who deals with us was very helpful and supportive (she has been all through). She couldn't get a care home place for mum until next Wednesday - but managed to arrange carers to come in 3 or 4 times a day (until the care home could take mum) to help with getting up, feeding dinner/changing pads and bedtime. Phew, I thought, thank God for that, we should be able to cope til then. Well, the carers came today and they are less than useless. I remember a visit from a social services person before who suggested carers coming in to help and my dad said 'Well, what would they do?' And she replied, 'they will help with whatever you want help with.' Obviously this is not the case. My dad asked for help with moving my mum from bedroom to living room in the morning and back again at night, and he wanted someone to help feed mum. The carer said she can't help move her. It's health and safety. She has a wheelchair so it's only helping her in and out of the chair really. I can do this but my dad can't on his own, he needs someone to help him do it. The carer refuses to so now I either have to stay here all day or come back 3 or 4 times to do it, which renders having the carers (who we're paying for) pointless. They've also refused to help with feeding - except she said she'd get the breakfast ready - that's putting milk on wheetabix, so thanks thats a really big help. But she won't help feed. Don't know why. And it's only 3 visits, not 4. It's totally pointless them coming. The only things they seem willing to do is the things my dad didn't really need help with (things he was managing okay).
So looks like I'm here all day everyday until the care home can take mum. It's bank holiday but I'm supposed to be back at work Tuesday. It's okay today but I have no childcare from tomorrow as my partner is working so my daughter will have to come here with me, which isn't really fair on her. It's a bit selfish but I did have things to do this weekend which have all had to be cancelled too, so I'm sad about that as well really.
Rant over. Thanks if you managed to read this far!
So. Feel like I/we are stuck in a bad day that's never ending. Our situation is my mum (74) has Alzheimers, she was diagnosed 4 years ago and I feel like she's gone downhill very quickly since. She doesn't communicate much anymore. She might say yes or no or the odd couple of words, very rarely really makes sense. She can't feed herself anymore, we have problems getting her to open her mouth to eat but when she does she chews and swallows okay. She's doubly incontinent. Spends a lot of time sleeping now. On top of everything else she is being assessed for Parkinson's disease, which is looking pretty likely she has as she's got a tremor which comes and goes and is now also having balance problems and rigid muscles which I think is called a parkinsonism.
My dad is her full time carer. He is 78. I help if I can but I work full time and have a 4 year old so can't be here full time. Also, if I'm honest, I'm definitely not cut-out for this job! I feel overwhelmed by it and stressed over it and I'm not even the 'proper' carer. Anyway my dad was reaching a crisis point where he felt he couldn't cope either. SS got involved and 2 weeks respite care was arranged, which went okay really - as okay as it could be. Mum came home on Tuesday. Things were okay at first but then on Thursday she started having mobility problems out of nowhere, like someone had flicked a switch. I don't know if that's down to the Parkinson's or dementia or both perhaps. Before she could shuffle-walk about okay, even if she didn't always want to go where you were trying to take her!
Thursday morning my Dad rang and said Mum had fallen (flopped down on the floor) and he couldn't get her up. My daughter wasn't at pre-school that day so we rushed round but by the time we got there, he'd got her up again. All was okay but then Thursday night she had another fall and banged her head this time. Again Dad couldn't get her up so I went round and we managed to get her up again ourselves (though I was close to ringing for an ambulance!) and to bed. Friday morning - another fall. Again we managed to get her up.
We called social services for help and the woman who deals with us was very helpful and supportive (she has been all through). She couldn't get a care home place for mum until next Wednesday - but managed to arrange carers to come in 3 or 4 times a day (until the care home could take mum) to help with getting up, feeding dinner/changing pads and bedtime. Phew, I thought, thank God for that, we should be able to cope til then. Well, the carers came today and they are less than useless. I remember a visit from a social services person before who suggested carers coming in to help and my dad said 'Well, what would they do?' And she replied, 'they will help with whatever you want help with.' Obviously this is not the case. My dad asked for help with moving my mum from bedroom to living room in the morning and back again at night, and he wanted someone to help feed mum. The carer said she can't help move her. It's health and safety. She has a wheelchair so it's only helping her in and out of the chair really. I can do this but my dad can't on his own, he needs someone to help him do it. The carer refuses to so now I either have to stay here all day or come back 3 or 4 times to do it, which renders having the carers (who we're paying for) pointless. They've also refused to help with feeding - except she said she'd get the breakfast ready - that's putting milk on wheetabix, so thanks thats a really big help. But she won't help feed. Don't know why. And it's only 3 visits, not 4. It's totally pointless them coming. The only things they seem willing to do is the things my dad didn't really need help with (things he was managing okay).
So looks like I'm here all day everyday until the care home can take mum. It's bank holiday but I'm supposed to be back at work Tuesday. It's okay today but I have no childcare from tomorrow as my partner is working so my daughter will have to come here with me, which isn't really fair on her. It's a bit selfish but I did have things to do this weekend which have all had to be cancelled too, so I'm sad about that as well really.
Rant over. Thanks if you managed to read this far!
