Hi there, my mum is 71 and was diagnosed with Lewy Body in January.
Of course I’m sure this would have been building up for years but it all happened very fast due to delirium from a UTI. Our first trip to a&e was October then we had a diagnosis of LBD by end of Jan. Mum has 2/3 of the main symptoms of LB - she does not have the sleep disorder.
So far the cognitive side of the LB is rapidly declining and mums anxiety and depression are disabling for her so she cannot be alone and has 24/7 carers living with her in her home.
All of the advice we are given is that you should keep people at home for as long as possible and that a care home is a last resort. The CPN says that people can rapidly deteriorate in a care home environment. Believe me I want the absolute best for mum and I value the opinion of the professional but I can’t help but think they are wrong and that a home would be much better for mum.
I say this because when I visit mum she just does not seem happy at home all the time with one carer. They don’t do anything...I know it’s lockdown no one can do anything...but even so they are just in a small flat with one bathroom and no outside space watching tv all day. With the LBD mum well formed delusions, so she thinks the carers are stealing from her and everyone’s tricking her for money. She doesn’t understand that she’s the only one taking the meds and wearing the patch...she thinks she’s in an experiment.
My thoughts are that mum would be much happier and distracted from these delusions if she were around other people with dementia she could talk to and have activities or more space to roam around.
Whenever I mention it to the CPN she just says that mum is no where near needing to be in a home and that it’s a last resort. But to me that doesn’t make sense as what if mum were not able to afford to have a 24/7 private carer....she would 100% be put in a home by the NHS. Surely the answer is that either a private live in carer or a home is the same same in terms of 24/7 care which is what mum needs.
Eventually mum will have to go into a home as when the Parkinson’s side of the LB she will have troubles with movement so this will happened eventually it’s just if we make the move sooner that the professionals believe is necessary.
We are not able to visit any homes at the moment due to covid but my hope is mum will settle into one nicely and have the day to day anxiety’s and worries taken away simply by being in a likeminded environment, friendship, activities and of course clinical care from a team of people.
I guess the advice I’m looking for is peoples experiences with care homes and dementia? Is it wrong to think that a care home is the best place for mum even though the professional advice is she isn’t ready to go?
Thanks so much for everyone’s time. I honestly have spent hours on these forums in the recent months I have found it a huge source of support and information.
x x
Of course I’m sure this would have been building up for years but it all happened very fast due to delirium from a UTI. Our first trip to a&e was October then we had a diagnosis of LBD by end of Jan. Mum has 2/3 of the main symptoms of LB - she does not have the sleep disorder.
So far the cognitive side of the LB is rapidly declining and mums anxiety and depression are disabling for her so she cannot be alone and has 24/7 carers living with her in her home.
All of the advice we are given is that you should keep people at home for as long as possible and that a care home is a last resort. The CPN says that people can rapidly deteriorate in a care home environment. Believe me I want the absolute best for mum and I value the opinion of the professional but I can’t help but think they are wrong and that a home would be much better for mum.
I say this because when I visit mum she just does not seem happy at home all the time with one carer. They don’t do anything...I know it’s lockdown no one can do anything...but even so they are just in a small flat with one bathroom and no outside space watching tv all day. With the LBD mum well formed delusions, so she thinks the carers are stealing from her and everyone’s tricking her for money. She doesn’t understand that she’s the only one taking the meds and wearing the patch...she thinks she’s in an experiment.
My thoughts are that mum would be much happier and distracted from these delusions if she were around other people with dementia she could talk to and have activities or more space to roam around.
Whenever I mention it to the CPN she just says that mum is no where near needing to be in a home and that it’s a last resort. But to me that doesn’t make sense as what if mum were not able to afford to have a 24/7 private carer....she would 100% be put in a home by the NHS. Surely the answer is that either a private live in carer or a home is the same same in terms of 24/7 care which is what mum needs.
Eventually mum will have to go into a home as when the Parkinson’s side of the LB she will have troubles with movement so this will happened eventually it’s just if we make the move sooner that the professionals believe is necessary.
We are not able to visit any homes at the moment due to covid but my hope is mum will settle into one nicely and have the day to day anxiety’s and worries taken away simply by being in a likeminded environment, friendship, activities and of course clinical care from a team of people.
I guess the advice I’m looking for is peoples experiences with care homes and dementia? Is it wrong to think that a care home is the best place for mum even though the professional advice is she isn’t ready to go?
Thanks so much for everyone’s time. I honestly have spent hours on these forums in the recent months I have found it a huge source of support and information.
x x