GP appointment for "confusion" - to accompany or not?

[MereDintofPandiculation]

Father is becoming "confused" and linking unrelated things into a single unlikely narrative, often ending in a perceived likelihood of bankruptcy of imprisonment. Particularly evident in appointment with health care worker last week, to the extent they raised their concern with his GP. GP suggests seeing him and persuading him towards a referral for further investigation.

I usually attend medical appointments with him (at his request), but am worried that if I attend this one, it will break his trust in me. He, of course, believes himself to be perfectly rational, it's other people who don't understand the problems or threats.

Anyone had any experience of similar? What did you do? How did it turn out?

Anyone?

As long as he consents I think it’s important that you go and be honest. You can always acknowledge his views and speak to him like an adult and hopefully he won’t feel patronised or press ganged.
He must feel anxious about his concerns -perhaps you could get him to speak about this anxiety in the consultation?

Alternatively (and second best) you can speak to the gp to give information. Confidentiality means that his medical info can’t be shared without his consent but does not mean the gp cannot listen to your information (they may not be able to share anything back though) .

Go in if your dad allows. Either way ask the GP if you could have a quick word afterwards - make up some admin type reason. Or perhaps that the GP phone you. (Perhaps have a quick word with the recpton in advance explaining that you dont want to lose your dads trust or undermine him, but that you have concerns, and that you understand that the GP will not be able to divulge anything, but it might help if he were aware of your concerns.)

I had both from DMs excellent GP. When she was discharged following a fall and hip op, she refused to let me into the appointment. However he somehow got her to agree to my request that I have a quiet word with him afterwards. "That makes more sense" was all he said when I went through her recent health history. He then phoned me essentially asking me which community team to prioritise. The memory one, given her apparent confusion, or some sort of post-op physical one. No contest for me.

I would suggest being there. IME a lot of people in similar circumstances will say they’re ‘not too bad’ because they don’t want to be seen as struggling, or like your Dad, don’t think there’s a problem. I think your best approach is to let him talk first and then when the opportunity arises, give a couple of examples of your concerns. He might say ‘That was their fault’ but the GP will probably see it for what it is.

We had to persuade my Dad to get referred when we suspected he had Parkinson’s. He was adamant he didn’t - he’d googled it! - even though he had loads of the signs. (This used to be my area of specialism in nursing so I was pretty sure). It was only me attending with him that showed it for what it was, such as:
Consultant: ‘Do you think you have a quiet voice?’
Dad: ‘No, not really’.
Me: ‘I think you do Dad, we struggle to hear you on the phone’.
It was definitely worth me being there but as Needmoresleep says. if you are worried, you could see if you could talk to the GP privately (the concern about that is if your Dad found out you’d done it without him, would he be more upset?). Not an easy situation, I feel for you.

I work in a surgery so what people often do is leave a message for the doctor with their concerns before the appointment the doctor can not speak to you about your dad's medical conditions ECT without his consent but they can take your concerns into consideration so I'd leave a message before the appointment and then go in with them to appointment

I've spoken to drs about my concerns about a parent (and in one case a friend's mental health) in advance of a visit. They can't discuss a patient but they can listen.

You definitely need to be there.

You have my sympathies, we went through this with my FIL who was becoming more and more forgetful and confused, culminating in him parking his car in a multi-storey car park and it being "stolen" only to be found by the car parking attendants 2 hours later on a different floor.

He also drove to a local Sainsbury's and didn't return. We lived about 1.5 hours away and in the end we had to inform the police who were able to check using the number plate recognition that he was two counties away but appeared to be heading back the right way. The police were fab and by the time my DH got to my PIL's house my FIL had returned but was distraught. His version of events was that he had just turned left instead of right out of the supermarket and it wasn't a big deal but he was clearly traumatised.

DH convinced FIL to see his GP and for DH to go in with him. Not surprisingly it led to FIL losing his licence and I don't think he ever forgave my DH as he blamed him for agreeing with the GP. It upset everyone but especially my DH but was the right decision in the end for FIL's safety and others on the road.

It such a difficult one as you have your DF's best interests at heart but he may not always see it like that. Sadly my FIL's forgetfulness got worse (we got him a mobility scooter and had to stick a label on it asking people to ring our number if they found FIL "lost"which happened a few times) but his forgetfulness also meant that he forgot if he was cross with us about something so occasionally worked to our advantage.

I definitely think you should go into the GP with him as sadly they will often be a little economic with the truth which in the end will not get them the help they need (if they need it). Good luck to you and just remember you have his best interests at heart even though he may not always see it that way!

I think you need to go. Could you discretely leave a letter with the GP or something with your concerns and examples of recent incidents of confusion (this has the added advantage that your concerns will be in writing and can go in your dad's medical records)? I had to do that with my Dad when he developed early onset dementia and was no longer safe to drive.

I have already spoken to the GP. He's going to invite my Dad in on the basis of the worries of the other health professional. My father will feel it is a waste of time because the whole problem is because the other health professional "didn't understand" the complexities of what he was trying to tell her. He'll feel the same about the GP. If I back up the concerns he will feel that not only have I failed to understand the important worries), but that I am now conspiring against him.

And since I am his main source of support and advice, that is a problem.

I can avoid saying things in the appointment, but my father will want to discuss it with me. I wonder if I can suggest it might be to do with his habit of wandering away from the subject (rather than having to suggest that I too fail to understand or credit his wilder fantasies)

What outcome do you want?

My guess is that you want a referral to the memory clinic. You can explain to your dad, though probably in a way that does not require him to acknowledge problems, that there are some physical ailments that cause confusion and memory problems, and that doctors will want to check for these. Plus some drugs (aricept etc) that can help stall memory loss.

Do go along to the memory clinic and sit through the testing if you can. It is useful to see what capaciity is lost and what remains. So DM had no problems with calculations and drawing clocks (with Roman numberals even) but thought Margaret Thatcher was Prime Minister and could not remember the names of her grandchildren.

Could you say that if you're there you can support him in getting across what he wants to say? That they might be less dismissive of two people saying the same thing? Could you also say it's useful for anyone to have a second person present for a medical appointment to take note of what the dr says (my 85 year old MIL finally bought that one recently).

Would he buy the suggestion of you being there to stop him wandering off the point? My DF was a gold medalist at wandering off the point but would get incredibly grumpy if anyone suggested as much! That also made me smile given DH's recent experience of trying to stop his mum from telling paramedics a long-winded tale about how her chest pains, fainting and palpitations were all brought on by the stress of DH taking her to choose a new fridge freezer and all the difficulties that entailed ...

Go with him and leave and sit in waiting room if requested to do so.

I’d go if you can.

I had this with DM - she became increasingly paranoid, made poor decisions, refused to eat and drink a lot of the time because she thought she was being drugged, behaved irratically and out of character. I could go on (a lot ). She was clearly not right.

Yet she retained a good memory and aced every single mini-mental state examination (MMSE)) she was given. Repeatedly, health professionals (and I’m one myself) told me that she was OK and had full mental capacity. Fortunately, I knew that the MMSE was not a test of capacity and was able to argue with the professionals, but I still had to do a lot of pushing to get anyone to take it seriously.

If I hadn’t pushed so hard, DM would have been allowed to stay, living alone, not eating and wandering in the street in inappropriate clothing. I honestly believe that she would have died within weeks.

I’d go. Then if the Dr asks questions that your Dad answers incorrectly, you have an opportunity to gently interject, well not always Dad, do you remember last week when you... at least then the Dr gets an accurate picture.

I also found the Alzheimer’s helpline incredibly supportive. I rang in desperation one day when I was really struggling to get anyone to listen to me - to such an extent that I was questioning my own sanity. It was such a relief to speak to someone who believed me, and I will always be thankful to the wonderful lady at the end of the phone who gave me the strength to fight on.

Good luck

Butteredparsnips - my mum was the same when her dementia kicked in. She was hospitalised following a fall and this seemed to unleash rampant dementia (whereas prior to that we'd only been starting to have suspicions). We were told initially that her test scores and scan did not indicate anything unusual in a woman of her age. I pointed out that, contrary to what DM said, my MIL wasn't really in the bed opposite, my ds was at school 200 miles away not one of the ward drs and my DF hadn't been in to see her as he'd died 3 years earlier.

The hospital also talked repeatedly about sending her home (a lot of the time she thought she was at home and kept asking me to fetch things from other rooms). She was in hospital for about 2 months while her condition gradually deteriorated (they were keen to improve her mobility but ignored the fact that when she was mobile she would set off walking to visit her own mother, who died in the 1950s). It was only about 3 days before they discharged her that we had a meeting where we were told there was nothing they could do, she couldn't go home, so had we decided where she was going to go.....

Sorry op - I'm derailing your thread. All still very raw for me.

Yes Blue Sky - it’s incredibly hard isn’t it? I found I had to keep saying no. Because Safeguarding. Constantly. It’s a frustrating road.

OP I hope you are believed. IME when a close family member notice a change, they must be listened to.

He'll want me there - he likes me to go to all his appointments as a notetaker. And I don't think there's any problem that the GP won't believe me. The problem is that my father won't believe either me or the GP that he has a problem - and if I'm there he may feel I'm ganging up with the GP against him.

I'm not so worried about referral to the memory clinic. Even he knows his short term memory is a problem. It's that I'd like to get to the bottom of the paranoid fantasies - he's spending a lot of time worrying about things he doesn't need to worry about, and it's screwing me up to, and making it less easy for me to support him.

Go, and take notes and don't say anything. I'm sure the GP will talk only to your father but if s/he does try to direct comment your way, deflect it back to your dad and say explicitly that's what you're doing.

That way you can have your own take on what the GP says without it being a 'ganging up' thing.

@Butteredparsnips It's so hard, isn't it, balancing safeguarding with autonomy? The Code of Practice for Power of Attorney makes it clear that "capacity" includes the capacity to make bad decisions. Sometimes it is possible to achieve physical safety only through causing mental distress - how to get the balance right? I'm sure this is all very familiar to you.

@Mookatron I suppose it's also "what happens afterwards?" - he'll go through what the GP has said, and how the GP obviously hasn't understood what he has tried to explain to him about eg the White Paper that The Minister is publishing in September, and how the onward referral is obviously a complete waste of NHS resources ... How to say "you do need to go" without saying "the GP is right" and putting thereby putting myself among the group of people who don't understand the "very real dangers" he's trying to explain, and therefore I'm another person whose judgement is not to be trusted.

Yes, I see it's tricky. Certainly not trying to minimise. I think all you can do is go along and see what the GP says/ how he or she reacts to your father and deal with it from there.

I don't want to make it worse, but are your father's fears grounded at all? Presumably you are pretty au fait with the narrative. Have you had an honest relationship up to now? I feel like if I said to my dad 'I'm not sure I understand either dad' and asked him to humour me by going to the appointment that would work in its way.

My dad is obviously not yours, but he is an intelligent man who could come up with some kind of unlikely but possible narrative that you're not completely sure is nuts (and might occasionally turn out to be true). Might that approach work?

My dad is obviously not yours, but he is an intelligent man who could come up with some kind of unlikely but possible narrative that you're not completely sure is nuts (and might occasionally turn out to be true). That's it precisely! One in a million chance of it happening - but cannot be proven to be impossible.

Your Dad's condition sounds like it has some similarities with the form of dementia that my father suffered from - Lewy Body Dementia, which was caused by his Parkinson's.

It is quite different from Alzheimer's dementia in that trying to reassure him that his fears are unfounded, or to distract him onto another subject did not help. In his case, it was often that he had woken from a dream and he could not differentiate between his dream and reality. He would have some sort of problem or dilemma that needed to be resolved, and he could not shake the 'dream state' until it was resolved. He did seem to be aware on some level that what he was experiencing was not true, but that did not help him deal with the problem or shift it.

The only thing that worked was for us (his family) to come up with a 'solution' to his problem, which then enabled him to put his worries to bed. For example, he was very distressed on one occasion by a concern about a missing child and he needed to "go to the river bank" to find this child. My mum tried to reassure him that no-one was missing, but he would not be convinced. In the end, I had to pretend on the phone to be a police officer (fortunately he also had poor hearing) and reassured him that there were no missing children currently on the national register, so the child had obviously been found and taken home.

I wonder if your dad could be in the early stages of something similar? If you feel that this could be a possibility then I would suggest finding some way of playing along with your father's worries. Could you maybe suggest that he needs to give his account of whatever conspiracy is currently bugging him to a 'person in authority', and as it is clearly too early to involve the police he should give it to the GP/other medical professionals, just so it is properly documented for any later investigation? Or something similar, but try to play along rather than deny or contradict his worries.

Good luck. My father was also particularly intelligent and imaginative. It was simultaneously heartbreaking and exhausting trying to keep up with the output of his imaginings so that we could come up with solutions to his problems.

I think you should go. The surrounding context you can give will help the diagnosis enormously. You can call in advance and suggest that the GP send your father into another room (perhaps a nurse can take his blood pressure), while you speak honestly and frankly to the GP.

Also, if it is dementia, prepare yourself now for the fact that at some point you are going to have to be the enemy. I spent too long trying to stay 'on side' with my mother, but eventually had to be the bad guy, and took control of her finances and life management. She railed against me and said some awful things. But by that time I'd positioned her social worker as 'the good guy', who could use coercion, while I had to simply be the mean bully.

Thanks everyone for your advice, it does help in clearing my thoughts