After going to see mum's GP to raise my concerns, mum will get a visit next week, while I am with her and I want to be prepared. Please, if anyone has any hints and tips, I'd be so grateful.
On a 'good' day, mum is cheerful, confused but access she gets confused, has poor mobility but will accept physical support and guidance and can discuss things like her care needs if the conversation is kept simple.
Today has been an example of a bad day. She had an upset last night because she became confused after se overheard a tense and overheated conversation between two other family members and because she knew that today, her new carer was due to come over to say hello and have a brew with her..
She was quiet and in low spirits when I arrived to get her up, washed and dressed, but I hoped she'd pull round. However, getting her ready coincided (Sod's Law) with a couple of phone calls and the arrival of a visitor to the house. By the end of breakfast, she was in the state I have come to call 'down her black hole' and staring blankly ahead, occasionally crying and insisting she knew nothing about the carers coming. When they came, she managed to be polite and even quite chatty for a time - telling them all about her experiences during WW2 when an evacuee came to stay on the farm! Once they had gone, she was very angry with me - accused me of wanting to get rid of her, became obsessive over her money again and demanded I find her some money to 'pay people to help her to the toilet' and it culminated in a sort of toddler meltdown starting with when she tried to get up unaided to go to the toilet and nearly fell, after which I was able to help her back to her comfy chair and she fell into a deep sleep.
She has forgotten how to write; has lost all her fine motor-skills (I've even bought her a simple Lego set and the other day we had a real laugh making some models - contrast that with today, when she's accused me again of not caring at all!) her eyesight was good at her optical assessment, but the consultant said there was obviously a neurological issue because she insisted she couldn't see. She's forgotten her way around the home she's lived in for over 50 years and struggles some days to use cutlery.
After 2.5 years of this - with me giving up my job and eventually finding a job where I just need carers in 1 day a week, I have managed to convince the GP there is a big problem. He's coming next week and she will be there, as he's coming to see her. I have no idea what her mood will be, but I am desperate for the appointment to actually trigger a result. As I told the GP, this all started with vision problems, long before the other problems and mum put it down to AMD, even though actually, her AMD isn't that bad when examined.
I've read a bit about PCA and it was like reading about mum! However, I don't want to 'second guess' or wind up the GP by admitting to asking the dreaded Dr. Google!
So, ideally I would like the GP to persuade her that this is serious and she needs further investigation: maybe there are aspects that can be controlled by medication, like the mood swings and the anxiety. I want to know what has done this to mum, as she is in denial. After a bad spell, she can't even recall any of the hurtful thins she's said.
For my own sake, as I'm literally hanging onto my job by a thread because her behaviour is making it so hard some days to focus on work and there's been a big delay in getting carers to cover the 1 day/week, I'd like to know the outlook even if mum doesn't, so as a family we can have a proper discussion about care options in the future.
If you are still reading - thank you!!!
There's another aspect that I'd also appreciate some guidance on. We parted company with the previous care firm because of concerns about them not taking the information or advice the family gave them seriously. Mum is great at going into 'host' mode, but the agency suggested to me (and I have it in writing) that my worries over mum having some form of dementia or neurological decline over and above normal old age were obsessive and basically deluded because the care team hadn't witnessed any of the behaviour. I was advised it would be 'pointless' to seek a diagnosis because mum's general health was good (how do they know?) and the tests would be partly visual ones, so she couldn't do them anyway. Their conclusion was that (based largely on the account of 1 lady who saw my mum an hour a fortnight) mum's down spells are actually my fault because somehow she picks up on my 'anxiety'. The same lady has apparently been advised by mum that she is 'ashamed' of her lack of clothes and the state of the house.
I know where this has come from: to avoid confusion, I just put out enough clean clothes for mum for the day. I also (with mum's consent and before she deteriorated, about 2 years ago) had a big wardrobe cull with her and we sent lots of clothes to the charity shop, with her full consent, leaving only the basics that were way to get on and off. Likewise, a combination of her vision problems and lack of ability to find her way round the house means that on occasion, she has a beef about everything being moved around in the kitchen and 'stuff' all over! In reality, she only passes through the kitchen once in a while, as she struggles now even to use the downstairs loo. She can't cook, use the kettle etc.
I know I've said this before on another thread, but the way the agency treated me left me close to suicide. I can't be much blunter than that. I have given up all my free time and my career for mum and I am with her every day and take the mood swings with the happy times. If I was prone to anxiety or paranoia, there is absolutely no way I could have coped for 2.5 years like this.
Do I mention this to the GP? Do I make a complaint to the CQC? Do I wait for some formal diagnosis as proof that there is an underlying neurological problem?
On a 'good' day, mum is cheerful, confused but access she gets confused, has poor mobility but will accept physical support and guidance and can discuss things like her care needs if the conversation is kept simple.
Today has been an example of a bad day. She had an upset last night because she became confused after se overheard a tense and overheated conversation between two other family members and because she knew that today, her new carer was due to come over to say hello and have a brew with her..
She was quiet and in low spirits when I arrived to get her up, washed and dressed, but I hoped she'd pull round. However, getting her ready coincided (Sod's Law) with a couple of phone calls and the arrival of a visitor to the house. By the end of breakfast, she was in the state I have come to call 'down her black hole' and staring blankly ahead, occasionally crying and insisting she knew nothing about the carers coming. When they came, she managed to be polite and even quite chatty for a time - telling them all about her experiences during WW2 when an evacuee came to stay on the farm! Once they had gone, she was very angry with me - accused me of wanting to get rid of her, became obsessive over her money again and demanded I find her some money to 'pay people to help her to the toilet' and it culminated in a sort of toddler meltdown starting with when she tried to get up unaided to go to the toilet and nearly fell, after which I was able to help her back to her comfy chair and she fell into a deep sleep.
She has forgotten how to write; has lost all her fine motor-skills (I've even bought her a simple Lego set and the other day we had a real laugh making some models - contrast that with today, when she's accused me again of not caring at all!) her eyesight was good at her optical assessment, but the consultant said there was obviously a neurological issue because she insisted she couldn't see. She's forgotten her way around the home she's lived in for over 50 years and struggles some days to use cutlery.
After 2.5 years of this - with me giving up my job and eventually finding a job where I just need carers in 1 day a week, I have managed to convince the GP there is a big problem. He's coming next week and she will be there, as he's coming to see her. I have no idea what her mood will be, but I am desperate for the appointment to actually trigger a result. As I told the GP, this all started with vision problems, long before the other problems and mum put it down to AMD, even though actually, her AMD isn't that bad when examined.
I've read a bit about PCA and it was like reading about mum! However, I don't want to 'second guess' or wind up the GP by admitting to asking the dreaded Dr. Google!
So, ideally I would like the GP to persuade her that this is serious and she needs further investigation: maybe there are aspects that can be controlled by medication, like the mood swings and the anxiety. I want to know what has done this to mum, as she is in denial. After a bad spell, she can't even recall any of the hurtful thins she's said.
For my own sake, as I'm literally hanging onto my job by a thread because her behaviour is making it so hard some days to focus on work and there's been a big delay in getting carers to cover the 1 day/week, I'd like to know the outlook even if mum doesn't, so as a family we can have a proper discussion about care options in the future.
If you are still reading - thank you!!!There's another aspect that I'd also appreciate some guidance on. We parted company with the previous care firm because of concerns about them not taking the information or advice the family gave them seriously. Mum is great at going into 'host' mode, but the agency suggested to me (and I have it in writing) that my worries over mum having some form of dementia or neurological decline over and above normal old age were obsessive and basically deluded because the care team hadn't witnessed any of the behaviour. I was advised it would be 'pointless' to seek a diagnosis because mum's general health was good (how do they know?) and the tests would be partly visual ones, so she couldn't do them anyway. Their conclusion was that (based largely on the account of 1 lady who saw my mum an hour a fortnight) mum's down spells are actually my fault because somehow she picks up on my 'anxiety'. The same lady has apparently been advised by mum that she is 'ashamed' of her lack of clothes and the state of the house.
I know where this has come from: to avoid confusion, I just put out enough clean clothes for mum for the day. I also (with mum's consent and before she deteriorated, about 2 years ago) had a big wardrobe cull with her and we sent lots of clothes to the charity shop, with her full consent, leaving only the basics that were way to get on and off. Likewise, a combination of her vision problems and lack of ability to find her way round the house means that on occasion, she has a beef about everything being moved around in the kitchen and 'stuff' all over! In reality, she only passes through the kitchen once in a while, as she struggles now even to use the downstairs loo. She can't cook, use the kettle etc.
I know I've said this before on another thread, but the way the agency treated me left me close to suicide. I can't be much blunter than that. I have given up all my free time and my career for mum and I am with her every day and take the mood swings with the happy times. If I was prone to anxiety or paranoia, there is absolutely no way I could have coped for 2.5 years like this.
Do I mention this to the GP? Do I make a complaint to the CQC? Do I wait for some formal diagnosis as proof that there is an underlying neurological problem?
