Hi everyone, I am new here and read through some of the threads - recognise a lot re invisibles, plus the feelings that go with caring for someone with dementia, especially grief at losing someone while they are still in front of you. I live for the rare occasions she smiles and tells me she loves me, then I know she is still there, just hidden.
My mum had a few problems that made us realise she was going down the dementia road - I would get phone calls in the early hours of the morning when she had no idea what the time was, plus difficulty in always getting words right etc. It progressed slowly, nothing to worry about, and I took to calling her several times a day just to help her understand - time for breakfast, lunch, talking about what to have for dinner, and then to say goodnight. Dementia clock was a life saver as it definitely cut the disturbed nights. Then about 3 years ago she had a small fall, no damage but when she went into hospital to be checked she was having hallucinations, had no understanding of where she was and would get so distressed they would call me or my brother to talk to her to calm her down. After a lot of tests, they diagnosed her with Lewy Body Dementia and sent her home on the understanding she would have carers twice a day. Over the next few years, she slowly deteriorated until she couldn't cook for herself, would not recognise she was home (brought back in the middle of the night a few times when she was found wandering), losing or hiding things. But it became more and more apparent she was no longer safe at home and we found a care home for her earlier this year after an incident which involved a lot of poo and a lot of rooms and absolutely no memory or understanding of what had happened. She has since gone downhill so fast that in a matter of weeks she became more or less bedbound, is doubly incontinent and is withdrawn into herself so much that she does not seem to recognise me properly anymore, although I can still help to calm her when she is upset. I have never been advised, but I am guessing she is in the middle stages of dementia, possibly moving into the later stages.
We applied for Continuous Health Care funding, as the Home said she needed one-to-one care which was so expensive we could not have afforded it; plus mum does appear to qualify - she was assessed as severe in one category and then had several moderate needs in others. She has little or no understanding of her surroundings, cannot ask for help or explain what she needs, has to be coaxed to feed and take her medications - she has actually lost weight since going in and she was a sparrow to start with. The nurse from the home was of little use, as I had to correct several of his statements during the meeting - such as mum didn't need any pain medication, and there were no prescribed meds for her skin despite his having assessed it as at risk of breakdown!
Unfortunately she has been turned down. I have the right to appeal, but I have not been given a copy of the decision tool to show why they turned her down so I am not sure how I can build a case for appeal. Is there a reason why they don't share this document?
I feel totally at sea, and there doesn't seem to be much help around. There is a lot I am too stressed to share but I can see you have all been there so I am sure you will understand - I just feel I need pointing in the right direction, with a helping of "it's going to be ok" to give me the energy to throw myself back into the fray
I am my mothers daughter - a fighter at heart, but I just feel that nothing I try is making a difference and every avenue is being closed off. Sorry this is so long - I think I am feeling very sorry for myself tonight...
Thanks all
HunnyBee
My mum had a few problems that made us realise she was going down the dementia road - I would get phone calls in the early hours of the morning when she had no idea what the time was, plus difficulty in always getting words right etc. It progressed slowly, nothing to worry about, and I took to calling her several times a day just to help her understand - time for breakfast, lunch, talking about what to have for dinner, and then to say goodnight. Dementia clock was a life saver as it definitely cut the disturbed nights. Then about 3 years ago she had a small fall, no damage but when she went into hospital to be checked she was having hallucinations, had no understanding of where she was and would get so distressed they would call me or my brother to talk to her to calm her down. After a lot of tests, they diagnosed her with Lewy Body Dementia and sent her home on the understanding she would have carers twice a day. Over the next few years, she slowly deteriorated until she couldn't cook for herself, would not recognise she was home (brought back in the middle of the night a few times when she was found wandering), losing or hiding things. But it became more and more apparent she was no longer safe at home and we found a care home for her earlier this year after an incident which involved a lot of poo and a lot of rooms and absolutely no memory or understanding of what had happened. She has since gone downhill so fast that in a matter of weeks she became more or less bedbound, is doubly incontinent and is withdrawn into herself so much that she does not seem to recognise me properly anymore, although I can still help to calm her when she is upset. I have never been advised, but I am guessing she is in the middle stages of dementia, possibly moving into the later stages.
We applied for Continuous Health Care funding, as the Home said she needed one-to-one care which was so expensive we could not have afforded it; plus mum does appear to qualify - she was assessed as severe in one category and then had several moderate needs in others. She has little or no understanding of her surroundings, cannot ask for help or explain what she needs, has to be coaxed to feed and take her medications - she has actually lost weight since going in and she was a sparrow to start with. The nurse from the home was of little use, as I had to correct several of his statements during the meeting - such as mum didn't need any pain medication, and there were no prescribed meds for her skin despite his having assessed it as at risk of breakdown!
Unfortunately she has been turned down. I have the right to appeal, but I have not been given a copy of the decision tool to show why they turned her down so I am not sure how I can build a case for appeal. Is there a reason why they don't share this document?
I feel totally at sea, and there doesn't seem to be much help around. There is a lot I am too stressed to share but I can see you have all been there so I am sure you will understand - I just feel I need pointing in the right direction, with a helping of "it's going to be ok" to give me the energy to throw myself back into the fray
I am my mothers daughter - a fighter at heart, but I just feel that nothing I try is making a difference and every avenue is being closed off. Sorry this is so long - I think I am feeling very sorry for myself tonight...Thanks all
HunnyBee
