GP Visiting Next Week

Mousehill

Registered User
Nov 28, 2018
45
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?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,390
Kent
I would show the GP this post @Mousehill.

I`m sure reading this will give the GP a full picture of the stress you are living with and would hope something will be offered in the way of better support for you,.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
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?
your documenting issues is a good thing
But..
When informing the GP break it all down to basic concise terminology
- cognitive decline
- cognitive issues
- behavioural changes
- lack of ability to manage finances
- unable to care for own needs
- lack of awareness of surroundings
- mobility decline
- hostess mode , causing extreme exhaustion
- lack of ability to manage on her own
Etc
Remove emotion from any documentation when presenting this written evidence.

examples of issues are good but again make sure the most important points are covered in a concise way with a couple of sentences.

As for the carers - well incompetence & arrogance comes to mind. You cannot change someone’s mind who is adamant they are right.
By getting your mum an referral/ appointment at the community mental health team - a scan & diagnosis will back you up.

take satisfaction in being correct
Xxx
Good luck
Xxx
 

Mousehill

Registered User
Nov 28, 2018
45
Thank you Grannie G and Desperate of Devon. The GP appointment went really well and mum has agreed to be referred to Memory Clinic. She actually admitted to the GP that she 'sometimes says strange things' which is her way as acknowledging her really down and agitated spells. I'm typing with trepidation because it's now just over a week since she's sunk into one of her angry and confused spells although she's gone very tired and confused this afternoon and was definitely not with us at bedtime.

One thing that has helped massively is getting rid of the old care agency and streamlining when carers come in. We've found a new agency who send the same person each time and who spotted immediately that there is every reason to suspect dementia. Mum has said she's much happier now she has me based with her a lot more and is happy to doze in the afternoon while I work, with mornings given over to doing little things with her like manicures, simple crosswords etc. She's even done a couple of very little exercise sessions and enjoyed them immensely! We're all very aware that the slightest thing can throw her into 'the zone' and she definitely drops in cognition and mood as the evening wears on.

She has no idea what day it is most of the time and gets upset when she can't remember. She also gets very confused over the fact that she has a grandson and a son living with her and every day, she asks how many people live in the house and where they are. Today she asked when she was going to school!

I've had a call from the Admiral nurses who are coming to give me some training and I hope (fingers crossed) things are looking up now. For the first time in over 2 years, I actually feel I can breathe again. One one hand, I just want to forget we ever used the first care agency, but on the other, I feel their advice and approach were so harmful and they could do that to another family in a vulnerable position like we were, so should I be making a formal complaint? The difference in mum is so huge, I shudder to think what would have happened if I had followed their advice! I'm also so relieved that my concerns about dementia are being taken seriously now.
 

Pete1

Registered User
Jul 16, 2019
490
Hi @Mousehill, just coming to this thread a little late. Pleased to hear that the GP visit went well and the new carers are giving you and Mum the support that you need.
One one hand, I just want to forget we ever used the first care agency, but on the other, I feel their advice and approach were so harmful and they could do that to another family in a vulnerable position like we were, so should I be making a formal complaint?
I had some quite serious issues that arose with a Home Care Company I had the misfortune of dealing with (I won't bother with the details), when I had a new provider in place I wrote an email to the head office outlining my complaint (copying the Manager and Local Authority in - I was self funding but the Local Authority also used the company). I decided to stop at that (rather than extend to CQC as in reality they will do very little), I didn't hear anything back, but I needed to focus on Mum's care and I think that's the space you need to be in. I have to admit it caused me a lot of distress at the time. Stay strong and take care of yourself. All the best.
 

Mousehill

Registered User
Nov 28, 2018
45
Thanks Pete, I'm coming round to the same conclusion (although the Manager in this case is the person who I have the issue with) I've decided to put it on ice for now, but once we have a formal diagnosis, I may make a formal complaint on the grounds that they offered medical advice which was not their place to do. In reality, things are so much better now, I'm just breathing a huge sigh of relief :)
 

Mousehill

Registered User
Nov 28, 2018
45
I rang the GP's surgery today and the referral went in, but I've heard nothing from the clinic yet. The GP's receptionist advised me to hang on another week and then ring her back and she'll chase it up.

Things are still going much more smoothly without the carers coming and going, but now it's down to 1 day a week with care visits, mum is much more prone to getting distressed the night before. I did find out about a local, very good care home that offers daycare and she seemed keen on the idea, but as soon as I had word from the manager that she was welcome to come and look around, she threw the idea straight out and said it was stupid!

I think I can guess the reason behind this, but she won't be budged.
 

Pete1

Registered User
Jul 16, 2019
490
as I had word from the manager that she was welcome to come and look around, she threw the idea straight out and said it was stupid!
Hi @Mousehill, is it worth making an appointment and just taking her to have a look? I know it all depends on the mood at the time which is pretty impossible to predict? All the best.
 

Mousehill

Registered User
Nov 28, 2018
45
Thanks Pete, it's so difficult planning ahead with mum because on a good day, I'm sure she'd be up for it, but on a bad day there's no way I could get her there. I'm just hoping Memory Clinic can shed some light as to what's really going on. The problem is that until I have some 'proof' of what's happening, there are a few family members and friends who just don't believe there's any great problem because they haven't seen the really bad times. If I can keep her totally stress-free for the day, she's fine - although she sees things and says some random stuff, but it's not unpleasant or aggressive. However, the merest whiff of uncertainty sets her off.

For example, on Sunday, my brother announced that my cousin wanted to come and see her today. She's been panicking ever since and last night, to add to the confusion, he went out without saying where he was going and when I got to the house to put her to bed, she was in a complete panic, paranoid that I had to shut the door quickly to stop her grandson from getting away! Although she was fine when I tucked her in and left her, by morning, she had done what she always does when she's really stressed, which is taken off her night pants and urinated in the bed. She could hardly walk today and although I made drink after drink all day, she let most of them go cold and then complained she couldn't drink them. I also got the usual, "you do nothing for me! You keep changing things! Where is my money?" All because she had worked herself up so much about visiting cousin.

When my cousin (who is lovely) finally arrived, she did mellow and chatted to her, but a lot of what she was saying was very mixed up. However, Cousin clearly wasn't seeing what I'd seen all day (which I'm glad about in many ways) and I feel nobody in the family really listens to me about what's actually happening. Instead, I get told mum's mobility is going because I don't get her to exercise enough! I feel like I'm talking to a load of brick walls in denial sometimes.

Even my brother has noticed how confused she gets and how she can say things that don't make sense, but he shrugs it off and just tells her she isn't making sense and he doesn't understand, whereas I'll listen and let her tell me at her own pace in her own way. I feel like I just spend all my time picking up the pieces. OH has seen what's happening and full supports me and I have one uncle who is really on board and understands, as he saw his own mother go through something similar.
 

Pete1

Registered User
Jul 16, 2019
490
it's so difficult planning ahead with mum because on a good day, I'm sure she'd be up for it, but on a bad day there's no way I could get her there.
Hi @Mousehill, I totally get that, easy to say not so easy to do for sure!

The problem is that until I have some 'proof' of what's happening, there are a few family members and friends who just don't believe there's any great problem because they haven't seen the really bad times.
Yes, a perennial problem, it is one of the real challenges. I often experienced the same, although in many respects I was pleased they didn't witness it! It sounds as though everyone likes to give advice without realising the situation. There isn't any easy answer to it, although over time as Mum's condition deteriorates it will become more apparent, but that is little solace in any respect. It does sound as though you have some support from a few though, which is good. Stay strong and look after your self too.
 

Weasell

Registered User
Oct 21, 2019
50
Just to back up what Desperateof Devon says, you need a brain scan.
Do not be fobbed off. They tried to pretend my mother was borderline.
So many of us deal with ‘ hostess mode experts’, my best advice is to keep reading this forum. The last post I made contained the sentence’ mother with dementia or daughter with mental health’ which is how you can be made to feel. The only cure is the realisation you are not on your own!
make sure you have claimed any money available, gardeners and cleaners are part of my prescription!
if living on their own, community charge rebate.
Attendance allowance.
claim carers allowance if appropriate.