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Help - very dotty old dad has been told he hasn't got dementia...

(41 Posts)
Corygal Sat 29-Dec-12 23:46:35

Well, thanks for that, unknown GP. Mind you, I'd seen this one coming, and I badly need the wisdom of MN to deal with it.

The main problem is that dad,75, has been showing signs of dementia - losing his way, forgetting daily skills, getting bad-tempered, repeating himself endlessly, since he was in his mid-60s. He drinks heavily in the evenings, which makes all the symptoms a lot worse. A lot worse - he monologues for 2 hours, loudly, and slaps anyone who tries to speak/go to the loo, f'r'instance.

But he presents brilliantly - he's practically a professional raconteur, charming, funny, well dressed and urbane. He's also way too young, still, to have Alzheimer's and he hasn't had a stroke ie no vascular dementia. He comes across normal to people who don't know him.

So I can see why the doc signed him off so blithely. The tests for dementia set the bar so low that a washing machine could pass most of them, grrr.

The issues remain, however:

1) how the hell do we find out what actually is wrong with him (I suspect alcohol has a lot to do with it)

2) how do we cope with his uncreasingly unpleasant behaviour. In the past ten years, he's done things, partic to me, that I wouldn't have tolerated if I hadn't given him the dementia disclaimer. Serious, taboo-busting stuff.

WWYD? Wail.

HoleyGhost Wed 02-Jan-13 17:35:38

Vascular dementia sounds plausible.

Given that you don't like them and have been disenherited, why do you intend to take on their care?

Corygal Wed 02-Jan-13 16:32:23

You are brilliant, thanks. Will have a crack today - a million thanks again.

TheSilveryTinsellyPussycat Tue 01-Jan-13 00:03:31

My DFIL had several mini-strokes, which while not noticable at the time, had a cumulative effect, in that he forgot how to take photos and how to drive, really, but retained his marbles otherwise, if I can phrase it somewhat indelicately. I imagine that the effect of mini-strokes varies according to where in the brain they happen. DMIL was v worried, but either she was afraid to broach the subject, or DFIL refused to believe anything was wrong. In the end, DBIL turned up on a visit, and immediately made GP appt and went down with DFIL.

They were quite near a specilist hospital (talking 15 years ago now though) so I think he had whatever tests were being done at that time. He was also on Warfarin to thin his blood, don't know if that was to prevent more mini-strokes or not.

Hope this may be of some use, if only to rule something out. Support group sounds like a good sourcce of info.

cozietoesie Mon 31-Dec-12 22:35:58

The page I linked to has support group details. Maybe they would be best placed to advise you and you should contact them?

cozietoesie Mon 31-Dec-12 22:32:52

It's a range of problems, Corygal - Pick's is only one but I mentioned it because it might steer you. The personality changes generally come first, I think.

fronto temporal dementia

But you need to get a clinical assessment in some way.

The very best of luck to the family.

Corygal Mon 31-Dec-12 21:45:19

Yes i think so too, but he's had it too long -unless picks progresses v slowly. Also, one symptom of pick's is silence - Dad talks for England.

cozietoesie Mon 31-Dec-12 19:19:26

Corygal

It does sound rather like fronto-temporal dementia (mentioned above) which is, I believe, a less common form and may not immediately be recognized by ordinary health professionals. You might care to loook this up - with reference in particular to Pick's disease.

Corygal Mon 31-Dec-12 19:12:45

That's so interesting - smacks a bit of Dad.

fiventhree Mon 31-Dec-12 17:39:47

I know someone very well who got dementia at 65. That person certainly lost all inhibitions, and I was led to believe that was quite common. They did what they wanted and said what they wanted, without at all considering how it would be received, as they might previously have done.

I was also with this person when they were diagnosed, by an exert at hospital. The doctor wasnt fooled, BUT the patient would most certainly have denied to relatives that this was the diagnosis, as they did not want it to be true. I remember that no matter what the doctor said, the person just kept replying 'oh no, I'm fine, I'm fine.'

Surely that is a sign of dementia?

Corygal Mon 31-Dec-12 12:08:44

Hmm - Dad's orientation has been permanently screwed since his mid 60s - he doesn't know where he is 10 min from the house they've lived in for 40 years.

He does confabulate - as an eg, he told me a brilliant story, wildly convincing, about one of his old interns who became famous, which he blithely confused with said intern's fraud trial 30 years on. I only realised when I read the court report in the paper later that day that he'd 'made it up', and, to boot, that the intern would have been aged 6 when Dad was accusing him of fraud (and being an intern in the first place).

The worry for me is the personality,er, deterioration. All his flaws have become the dominant, and virtually only, personality traits he has. His snobbery is, for want of a better word, insane. He genuinely doesn't give a shit about anyone else, and happily expresses that. He genuinely cares very deeply for himself and his own wellbeing and pleasure. It's out of character because it's his character distilled to its worst, non stop.

His old friends have fallen by the wayside. You can see people's eyes widen when he blithely comes out with some comedy remark about a neighbour 'being in trade' (Dad was, obviously) - and some dismiss him out loud.

Is that dementia? I bloody hope so, because otherwise I have to think again.

Kundry Sun 30-Dec-12 20:23:54

GPs however won't refer someone for an assessment who has no signs of having dementia. Part of the problem here is obviously that your dad went by himself and doesn't think he has a problem. So GP could have been fed a load of misinformation. But you must be realistic about what a specialist opinion will do for him - it won't change his behaviour for starters.

However I am still struggling to fit what you have described as dementia as it sounds more like many years of being a drunken arse.

I also think you really need to address what you hope a diagnosis to achieve? At the moment I actually think it would make things worse for you - increased pressure to look after your parents, not upset your dad as after all, he has dementia doesn't he, your mum waiting on him even more and essentially a get out of jail card for all his worst behaviour.

I think you should persevere on the assessment front but most importantly think about your relationships, boundaries with your parents as at the moment they seem to have carte blanche to hurt you.

higgle Sun 30-Dec-12 20:05:41

GPs don't diagnose dementia, it is done by referral to a specialist at a memory clinic, usually. Alcohol misuse, TIAs that have gone un noticed and rarer forms of dementia can mean that the diagnosis is a complex thing to do. Could you ask GP for a referral? I am surprised GP seems to have been taken in as one of the classic pieces of behaviour of those fairly early on in the dementia journey is to cover up the problem, often very plausibly. (I work in care)

TheSilveryTinsellyPussycat Sun 30-Dec-12 19:01:18

When my friend's DM was drinking and showing signs of dementia, they refused to assess her till she was off the drink. Thankfully she has given it up (it's banned in their house now), and although it turns out she does have dementia, she is much happier.

Couragedoesntroar Sun 30-Dec-12 18:57:32

OP a one off spell of disorientation several years ago isn't really characteristic of dementia. A fronto-temporal dementia would very likely have a quicker course than that, although TBH so would an Alzheimer's pattern.

Alzheimer's would most likely have an insidious onset which it doesn't sound like from your description. It does sound a fairly complex picture with your dad, with potentially organic (brain) and/or personality factors. If he agreed to go to the GP with you before he might agree to go again whilst you request for specialist assessment.

It's hard to know at a distance but for me significant warnings would be forgetting (usually without any insight into it) and covering up (in a way different from 15 years ago), adding extra information in an uncharacteristic way (like filling in gaps to a story with inaccurate information), showing unusual behaviour, again in a way that is out of character.

I don't have any big alarm bells ringing about your dad and possible dementia, but if I was you I'd persevere on getting a fuller assessment. A specialist would possibly decide to do a brain scan. These don't give a definitive diagnosis of dementia but can rule in/out a mass such as a tumour or a stroke.

Highlander Sun 30-Dec-12 16:14:21

He needs to see a psychogeriatrician. Dementia is v complex, and cannot be diagnosed on the memory tests alone. His alcoholism is a co-morbidity that requires specialist attention.

Keep a diary of events. Stuff to look out for is confusion at the end of the day, waking in the night and being totally confused ( FIL used tomwake and think it was milking time; he hadn't milked for 30 years), visual and auditory hallucinations (FIL used to 'see' people in dim light), paranoia, aggression.

Always attend appts; you dad And your mum will play down his symptoms.

DO NOT let you GP prescribe sedatives or anti-psychotics. These should only be prescribed for very short periods of time by a psychogeriatrician.

The taboo stuff you mention may be sign of fronto-temporal dementia; itshallmark from what I remember is unsavoury sexual behaviour (masturbating in public etc!)

Corygal Sun 30-Dec-12 16:09:00

I am disappointed by them, and horrified. The inheritance thang was a vicious blow. I am beyond hurt, still.

Neither parent has been kind or supportive, indeed the thought of my parents being supportive actually made me snigger just now. You take all the laffs you can get, eh. grin

You may not be right. Alcoholism can also cause such problems to arise; memory loss can also occur.

Do you think your Dad is an alcoholic?.

You must be very disappointed in them (and that is an understatement). Your mother seems to be more than happy to act as her husband's enabler and your Dad is a lazy, letcherous old man and drunkard.

Corygal Sun 30-Dec-12 15:51:18

Courage you are brilliant. Trouble is, because Dad is waited on in better style than the last emperor of Rome by me mam, it's nigh on impossible to judge his living skillz because he doesn't do any of the stuff normal people do eg make cuppa. Never has.

Mum does everything from the garden through shopping to the finances. Dad does dress himself and he can put the telly on - both rather flamboyantly, but that's it. grin

Is there anything you know of that I could read to see what I can spot? Apart from the 'personality change', he lost his orientation about 10 years ago, and endlessly repeats himself, which I would class as dementia not drink. Am I right?

Couragedoesntroar Sun 30-Dec-12 11:18:09

It sounds like you took him before so wouldn't be unreasonable to fill out the picture to the GP and then you both can consider it together. The screening assessments used by GPs (mini-mental state examination or equivalent) are easy so if people do badly there is probably an underlying disorder, but if they do well there still can be IYSWIM. They're not sensitive. You could take a list of problem situations to the GP which is all part of diagnostic procedure.

Generally speaking, there is no definitive diagnosis for dementia, it is all down to best estimates. However, specialists (of all professions) will know about the covering up and we can spot it easily (usually). However, we do sometimes have to wait and see how things progress. One of the measures of difficulty we use is whether someone can carry out 'activities of daily living' ie can they manage finances, take care of themselves etc.

And sometimes people have a co-morbid (additional) illness like depression or addiction. Sometimes ageing has a detrimental effect on personality and sometimes dementia can exacerbate pre-existing personality traits.

MerlotforOne Sun 30-Dec-12 11:07:39

Corygal, you can phone and speak to the GP and express your concerns and your side of the story. They won't be able to tell you anything and it's difficult for them to act on it if you don't want him to know you called, but at least your side of the story would then be there on his medical record, so they'd be less likely to be taken in by him next time.

FWIW, I someone is able to pass the dementia tests and denies there's a problem, I would be very hard to prove that their capacity to consent was sufficiently impaired to get them assessed by the older perons mental health team against their will. Sadly, your situation is far from unusual.

Sorry you're going through this, it's enormously stressful sad

Corygal Sun 30-Dec-12 10:46:51

Yep, I suspect the GP saw a delightful old boy, touchingly concerned for his capabilities, in there for all of 3 minutes, and signed him off with a cheery laff at the latest anecdote.

How much can you tell a GP about their patient without the patient knowing you've grassed them up?

Couragedoesntroar Sun 30-Dec-12 10:24:20

If you want a specialist assessment for dementia ask to be referred (by GP) to the appropriate services, likely to be Community Mental Health Team for Older People or a Memory Clinic depending where you live. They can then consider the situation and, if it's not straightforward, potentially refer you to a Clinical Psychologist who may do a more detailed 'pencil and paper' cognitive assessment as well as considering wider factors and your collateral history.

Korsakoffs is usually associated with extremely heavy intake of alcohol and someone wouldn't be able to 'cover' in the way they could with, say, Alzheimer's.

OxfordBags Sun 30-Dec-12 10:22:35

I know someone who was diagnosed with Alzheimers a few days after their 50th birthday, so he is not too young. Becoming innapropriately pervy and aggressive was one of the things that made his wife take him to the GP in the first place, btw. My DH's gran had Alzheimers too, and she also became very sexualised, as opposed to the prim and proper snob she'd always been.

He could be suffering from MH problems - if you described his symptoms in a 30 yr old, say, that would everyone's first thoughts. Unfortunately, when someone gets to a certain age, any unusual behaviour is put down to senility or dementia. If they don't fit the criteria then, however, for either, then theya re basically sent away to continue being odd and making the lives of their nearest and dearest a misery.

To me - and I am not a HCP - he sounds like he has some MH problems, caused by, or certainly exacerbated by alcohol and some sort of senility too. Also, with many dementia sufferers, they suffer from something called 'sundowning', which basically means that they can appear normal(ish) through the day but undergo quite a change when night time comes and are very obviously suffering from dementia. This sounds like your father, but the fact that he is also getting blotto at that time could be masking it, ie you all think he is just drunk, whereas he might be drunk AND sundowning. Do you see what I mean?

Aso, did he go to the GP alone and come back to tell you all the GP said he was fine? Because he might be totally lying about what was said, have you considered that?

The main thing is, you and your mother can't go on like this. If he is that sleazy towards you, I worry aout what might be going on between him and your mother that she might bpnot feel able to tell anyone. You certaily do not have to tolerate the incestuous comments and attempts, even if he was diagnosed with every form of dementia and MH issue under the sun.

Kundry Sun 30-Dec-12 10:19:58

Have you thought about having counselling yourself to process how you feel about this? His behaviour clearly dates back years but you still feel guilty about not looking after him in old age - even though most likely you won't end up with a penny for it.

He sounds like a classic toxic parent with your brother as the golden child, with added alcohol and age.

You really are in the territory of not being able to change him, but you can change your reactions to him but need help and support to do it.

Corygal Sun 30-Dec-12 10:09:47

Thanks - most helpful. All the worst traits are exaggerated - you couldn't put it better.

DF lives with DM who waits on him hand and foot - hyper old school. So survival is not an issue at the mo - but I think she is being worn down by him, as are we.

I need help on how to cope with a next of kin who can be so bloody. There's two areas: the day to day stuff with him monologuing for hours, relentless snob talk (he's an awful Bucket) and endlessly repeated anecdotes about himself, interspersed with snapping. He lives in a posh fairyland, and it's getting worse.

And the big stuff. As an eg, he's tried for years to disinherit me, on the grounds that their small terraced house - the 'estate' , cackle - should 'go to the son'. I mind about this, partic as I'm on the one who gets dumped with their care in old age.

He's also, ewww, eyed up my cleavage, up me kilt, etc etc. He makes my skin crawl.

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