Dementia CXR?

[FlatOutAgain]

Hi,

my mum was in hospital yesterday having a mass of tests that were not needed (there is another thread on elderly parents). We have access to her hospital records and saw a letter they sent to her GP this morning. On it, it said:

Clinician's comments: dementia CXR

The letter also says she had an X-Ray. She went into the hospital with chest pains (she does not have them and we have been through this so many times with the hospital) so they gave her an X-Ray which I assume was chest given her assertion it was her chest.

I googled it but can't find much apart from some really old studies.

We are waiting for her to be assessed by OPMH and she has had the CT scan which shows brain shrinkage although no final diagnosis as yet. Has anyone experience of knowledge of what Dementia CXR means?

thank you very much

No idea on that one sorry OP but Dementia U.K. have a helpline, they might be able to answer that for you?

CXR is chest X-ray.

Thank you. I have called and left a message to be called back. I guess they are very busy

There were lots of things but clearly Dementia CXR was one single part rather than being two separate parts. As we are waiting for a diagnosis on mum it could be that this is very important as when she went to the hospital yesterday we had not spoken about dementia so for them to mention it in the letter seems a real event for us. Thank you

CXR means chest X-ray. Impossible to comment on what they meant without seeing the rest of the letter which hopefully would give a bit of context but it sounds like she came into hospital, they think she has dementia (CT scan may be enough if they can see the report) and they did a chest X-ray. Which they did.

I've had a look at your thread in Elderly Parents. Without being there I won't get into the rights and wrongs of the paramedic taking mum into hospital but essentially you don't need a formal dementia diagnosis for the LPOA to be valid, just whether or not she has capacity.

What I think would be a lot more useful to you than the LPOA would be some advance care planning with your GP - there are usually electronic registers your mum can be flagged on so she doesn't automatically go to hospital, the GP can highlight that she rings about chest pain repeatedly and create an individualised care plan with you rather than just going to 999 every day which the ambulance service and hospital are going to be just as fed up of as you are. Even down to having something in a folder your dad can show any HCP who does get called to the house.

Something like:

Mum has a diagnosis of dementia
She calls 999 reporting chest pain when she is X
Her GP is Y
FlatOutAgain has LPOA for Health and Welfare and MUST be contacted immediately for all health problems (photocopy attached)
Her agreed care plan when she reports chest pain is to do Z
Her Treatment Escalation Plan is:

Most areas will have a formal Treatment Escalation Plan document.

This will carry a lot more weight with a random paramedic turning up than you just saying you are LPOA and want such and such as they will have evidence that this is a recurring problem, lots of thought has gone into it and they will feel protected in the decision they make.

@AnnaMagnani you wonderful person. Thank you very much indeed

The paramedic said he had carried out a cognitive test and she had passed it. I have no idea what that was but he said it was enough to show she was able to make her own decision. The last paramedic, before the hospital stay, made his own judgement after speaking with us and did not take her to hospital. He did and ECG and told her she was fine. She did not accept this but at least did not get taken to hospital. We know therefore it just depends on which paramedic you get. I would never criticise them as they are all brilliant and have all been very kind and understanding with us.

She only started doing this when the GP surgery stopped seeing her as it was out of control. She would turn up saying she needed help but they would say she needed an appointment and that they were busy. She then worked out that she could call and ambulance directly and after several attempts worked out that chest pain was the one to go for as she was more likely to be taken in. We are finding out that dementia, in my mum's case, has a level of deviousness that is at odds with the person being able to function. For those who read the other thread she waited until dad was settled by the paramedics until she went for it. Same in the hospital, she waited for her chance and got out of there. She used to call us really early in the morning when dad was in bed to say she needed help, that she was dying and to take care of dad etc. We stopped taking the calls and it just escalates until she hits the jackpot which is where she is now.

Once again thank you. I am taking the time to post as I am desperate to find any kind of resolution that will give my dad and us some kind of respite.

thank you.

Thanks. There is no pass/fail cognitive test your mum could have done and I am guessing she is very convincing.

I have seen patients with dementia who have a singular topic of interest like your mum wanting an ambulance, and if you didn't know, you would in no way guess they had dementia at all. One let me into her house, 'Oh I forgot you were coming' and we were a long way into the assessment until it became clear she had no idea I was a doctor at all. It was the 4th time we'd met and I introduced myself every time!

Paramedics are under a lot of pressure to 1. Get the call finished as quickly as possible and 2. Not be in trouble for missing anything dangerous. Their whole training will have focussed on chest pain=medical emergency so faced with a lady who is saying she thinks she needs to go to hospital, it will be a big deal for them not to do that.

The ambulance was for dad as he had collapsed onto the floor with covid and he has too many underlying health conditions to mention. When he was on the floor, mum loosened his trousers and took his wallet and then hid it. Incredible that her brain was prioritising the wallet over his health. The ambulance took around 15 hours to arrive due to a mix up. Mum saw her chance to muscle in on the ambulance and she took it. Honestly the paramedics never stood a chance. She desperately wants to be in hospital and once there she desperately wants to be at home. Its groundhog day and has been for a long time.

Her ability to work out how to get her needs met is spectacular given that she really can't manage even basic tasks.

It is a very very cruel disease.

Thank you so very much for you kind help. Despite being sleep deprived and having to try and catch up today I feel somewhat hopeful. Thank you

@FlatOutAgain I'm so sorry to hear this. One thing that strikes me about your Mum's actions is that they mostly seem to stem from her feeling unsafe or under threat in many ways. She is constantly at the level of the 5 alarm bells for the big fire isn't she? That must be so difficult all around. Would it help to do little things to acknowledge her sense of threat, like make a small plan for her and for your father's valuable items?I'm not sure what would 'stick' for her, but something like agreeing that purses and wallets will go in a certain box in a cupboard, her rings can go in a lock up box to which she has a key (keep a spare..). I've found it helpful to acknowledge the fears around strangers being in and out of their home, and to make them feel that little bit more in control. I wish you well and I hope this helps a little. You're probably already doing this sort of thing!

Thank you. Just to keep things simple I have a thread on elderly parents but posted on her as it was dementia specific for the Dementia CXR. On that, when I spoke to the GP she thinks that there is a full stop missing and that it should be Dementia. CXR in the list.

Regarding the security it would be difficult to have a single secure place. Mum is obsessed with even windows being open. Dad was going down to the garage when we turned up and whilst he was saying hello to us, mum had padlocked the side gate and locked the garage. She then hid the key. Dad couldn't get in the garage and was really angry with her. This is played out on a regular basis. Even on Friday night when we stayed the night it was very hot so we opened the windows and mum would not stop asking for the windows to be closed. When I popped to the kitchen she got up and closed the windows. We had the cooker raised recently to help dad and we found 'valuables' underneath the cooker.

@AnnaMagnani Thank you again. I replied in my other thread that the GP will put an 'Ambulance Plan' in place. Many many thanks

www.mumsnet.com/talk/elderly_parents/4586316-mum-update-bad-to-worse

@AnnaMagnani Just received the 'Anticipatory Care Plan' from the GP.

Thank you so much it will make a huge difference. The power of Mn :)

Really pleased, have replied on your other thread.