Hope GP has not made it worse?

For issues specific to caring for someone with dementia.
We went to see the GP yesterday to discuss patches and constipation problems.Husband had an accident but even worse did not even know it had happened and was lying in his own mess not even able to smell it!!!!! I was searching round for a litter tray........I was worried this was something more than the Cosmocol sachets.......

His weight is still down. I am just leaving him to it = getting basics in but have nothing left to give re coaxing him to eat. Just praying he will go into hospital.

GP took him off the sachets and is arranging a scan for his lower back. She examined him and thought his muscle function was good. She did not think there was an impaction.

Whilst he was lying down she whispered he seemed 'confused'. I totally agreed and she did a memory test which he passed - mega simple - months of the year and 20 to 0! Plus remembering a short address.

All I got last night was 'what were you whispering about' and ' I do not have dementia'. I had to fudge and say that she was worried he was having too much of the liquid morphine.

District nurse came out with no warning last night but felt he did not have a pressure sore and the red scales are due to psoriasis not bed sore, but we are getting a follow up visit and some cream and a cushion.

We are seeing the GP in 2 weeks. He is on a higher patch with liquid morphine. He 'lost' a patch last week which is mega dangerous given the kittens. Yet he gets very angry if I try to help him stick them on.

So whilst I am glad the GP is aware there could be a problem, I just KNOW trying to get him to a memory clinic is just not going to happen. He did ask for a sample jar so he could test his own urine for blood!!!!!! GP not impressed with this. He also tried to give the sample jar to the chemist a couple of weeks ago because he thought the liquid morphine came in it!

The deafness is getting very bad but he won't wear his Hearing Aid. I think my way forward is to 'back off' at the GP visit and let him talk or struggle so she can see for herself.....she did pick up the confusion without prompting so maybe given his alcohol abuse, she will realise something is going on? I do think he could convince most people that he has mental capacity including many medical staff. I do have to keep myself safe. I do think that he is physically frail so not at risk of physical abuse.
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ll I am doing is keeping a diary and I may write to the GP. My GP suggested going to see her but frankly it is hard to get out of the house and I am not a patient there. Given how he responded yesterday not sure I dare progress given we are together 24/7. But if he went into hospital I would push very strongly.

Thanks for reading. Not sure if this should be in the dementia section but I know that there are several who do understand
Hi Helen
You mentioned liquid morphine, I remember when Dad was given Oramorph, prior to him having any significant dementia issues, it produced excessive confusion such as you have described. He was taken off the Oramorph and replaced by Oxynorm which seemed more compatable with his kidney issues and produced less confusion althought still I think a morphine medication. Dad is also on a Fentanyl patch (more morphine) but The high dose of 25mg increased confusion an dnow on a low dose of 12.5 mg patch. I think it worth considering a pain management review as this may be adding significantly to problems. I's all some years ago now for me but I think there were incidents of incontinence caused by the morphine as well so perhaps all linked to medication and not new symptoms as such.
Dad's never really ever used the Oxynorm at home but it is there as a top up if the patch and paracetamol aren't sufficient.
Oramorph made me weird when I had it after knee surgery for a couple od days. Really noo myself at all.
Well tbh been worried about dementia for several years now but I do take your point Henriette and BB.

Right now he has been put up to 25 and 12.5 patches - 37.5 plus 10mg Morphine up to 4 x a day but GP did say he should not take it unless he really needed it - frankly did not think she was going to let him have it as he had got through 300 liquid morphine in 2 weeks.

Not sure what he can have if he goes off the morphine as has tried high dose Tramadol and other painkillers - the patches seem to be a bit of a 'last resort'.

I think I will consider a letter to the GP giving examples over the last months even years of what could be dementia. The problem I have is that he is so abusive and if he thinks I am progressing dementia diagnosis then it is going to cause real problems. That said I cannot understand how he can threaten me with legal action given the facts, 78 years old, history of brain atrophy and heamatoma plus more years of heavy drinking than I have been born, dementia seems a potential illness he is suffering from? Frankly I think this total 'denial' as in 'you cannot say i have dementia as I could beat anyone at chess' is confabulation and suggests deep down he knows something is wrong.....he did say he was scared I would have him committed when he had the heamatoma.

HOnestly this has been going on way before morphine came into play.
Might be worth looking into Oxynorm, that does seem very high dose of Morphine he is on- enough to confuse and befuddle anybody's insides and head. Can you ask for a referral to pain management?
Can I ask what is initially casing the pain?- sorry if this has been discussed elsewhere.
No problem. It seems to be mainly oesteoarhritus in his back that is causing the worst pain - I have asked about a steroid injection but there is a lot of damage so GP did not think this was an option. He also has lupus (now dormant I think) and Psoriasis plus irritable bladder and Acid Reflux. He has had kidney problems but apparently that is now 'better' I think it was AKI although never really got an answer re the cause - think it may have been antibiotics/painkillers.

He also has blood in his poo but that seems to be down to divictullitus and GP does not seem too worried although she did say that the constipation would make it worse. He has had blood in his pee but has to take another sample when we next go - think last one clear.

I think the confusion and abuse started way way before the morphine frankly but I am frightened of him and not in a position to leave and I think deep down he knows something is very wrong. He has not been doing his teeth for nearly a year and is living off the Fortisips despite help and support from a 5& dietician. I honestly think this self neglect is a sign of dementia although it could well be depression. I will mention the diet again to the GP but what can she do? I cannot afford to keep binning food that I have been buying to get him to eat - he has no interest. I think his constipation may cause a bad taste and he says the fortisips just slip down his throat.

He tends to take swigs of the morphine but we do have a syringe. However I do monitor it and he seems to be keeping to the dose even max dose. He uses it downstairs in the night, as he tends to sleep a lot in the day and be awake at night if he is pain. Frankly if he has 'mental capacity' he should be able to work out if he is overdosing and I do not think he is.I feel GP will try to give him less morphine next time as hopefully the patches will have kicked in.He did not seem to do well with the 12.5 then the 25 and has just given me a long lecture re how patches do not work. Apparently he knows more than most GP's. Surely this 'aragonance' is a sort of confabulation?

I have noticed the struggling with the computer short term memory loss for several years BUT he was drinking heavily so some may be linked to this.

All I can do is step back at the GP surgery and step in when asked a direct question. He is very deaf and I have tended to jump in maybe too quickly. I think she has to see again how confused he is and then it is her decision if she proceeds or not. I know my late father was quite bad and he refused a Memory Clinic - I did not know this for several weeks. My husband would never willingly allow himself to be labelled as having dementia as then it would mean a loss of control.......I do think he is terrified of being sectioned because when he had the heamatoma they would not allow him to discharge himself....

Thanks for reading Henrietta...
Oh Helena - talk about not single spies but battalions (or whatever that quote is!). What a lot you have to handle in your husband....

To be honest, does it really matter WHAT is causing the confusion, or whether it's formally labelled dementia or not? (Except for the issue I'll raise below).

After all, there are (at least!) four possible causes your posting indicate -

(1) Actual dementia
(2) Alcohol 'dependency/addiction' - overuse
(3) Pain meds
(4) Any other meds/ailments (eg, kidney infections etc etc)

Any or all of these could be causing his current condition.

BUT, and I tread carefully here, there is also the 'endemic' problem of his own personality/character. He does show 'hallmarks' of having what might be called a tendency towards a 'controlling personality'.....or, at the very least, him having got into the habit of assuming, because of the substantial age gap between you, of 'he knows best'. I try and be generous here, and remember that I will probably, for example, always think of my now grown up son as a 'kiddie' (!) and that therefore 'mum knows best' and that is an automatic assumption. So it could simply be with your husband that having, all your married life, thought that because of the age gap 'he knows best' he has no reason to change that attitude even though you are now 'well grown up' yourself!!????

I think all of us fear 'losing control' but if one has spent years and years being the one 'in control' in a marriage (for whatever reasons), then that would be extra frightening. He may fear, at some deep level, that you will 'abandon' him (looking at the psychology now of those who are 'actual controllers', one explanation for their 'coercive' attitudes and the mechanisms by which they attain psychological 'dominance' over their beleaguered partner, is that they have been scarred by abandonment in their childhood, and therefore seek to prevent that ever happening again by whatever means possible, even condign ones....).

You do seem to have put up with a great deal from him, and that is only increasing. May I offer a thread of 'comfort' perhaps?

IF his confusion IS caused fundamentally/mainly by dementia (possibly exacerbated by the other factors above), then, eventually, if he survives to that stage (which might not happen given all his other ailments etc), he should 'gentle'. It will be sad when it happens, but eventually they sort of 'give in' perhaps is the way to describe it. I've seen this with my MIL, it's as if 'the fights gone out of her' - she simply now is passively 'acquiescent' in almost every respect (except me wiping her face with a damp cloth after getting sticky jam on it from the cream teas I bring her!!!!!!). So you may well find this happens with your husband. It will be sad, as it will show how 'far gone' he is in his journey towards the end of his life, but it should, though, make your own passage beside him the easier to cope with.

Wishing you all the best that can be, in such a difficult and ongoing situation - kind regards, Jenny
The 'issue' I mentioned is, of course, financial. Unless, really, his confusion is, indeed, diagnosed as dementia, and it has reached/will reach a point where he is deemed to be without legal capacity, then, of course, you will be able to 'take over' control of finances, and health and welfare, even if that's via the Office of the Public Guardian.

At that stage then you will be able to make the decisions that may then, sadly, need to be made about him - such as permanent residential care maybe???

That said, of course, if he is self-funding, then the dire financial implications for yourself will have to be assessed. Like so many wives/husbands, you may be 'trapped' into continuing to care for him yourself, at home, (hopefully with the help of care-workers to lighten the load), simply in order to preserve the estate and your eventual inheritance, to secure your own financial future. Not an easy decision to make - so much, sadly, all boils down to life-expectancy.....

(I'm sorry if that sounds callous towards your husband, it's just that, as a widow myself, I know how incredibly important the financial side of widowing is - I was extremely fortunate that my husband's annuity-based pension kicked in, so I get half of that, plus he'd saved hard all his working life, so was able to put my son through uni without him being burdened by a student loan, etc, but I know, scarily, that I have to be able to 'provide for myself' in terms of housing/cost of living ,etc, now there is 'no one else' in my life. That's why I urge you to 'think ahead' to what the situation will be in various scenarios in respect of your husband - ie, what impact his longevity will have, and what impact his care needs will have, on what will eventually be your future.....)

(Sorry if that's a painful issue, ie, the prospect of widowhood at all, but it is, given women's general longer life expectancy, let alone any other factors, something we all have to deal with most likely - yet when one is 'firefighting' in a difficult care situation, as you are, it can be something that is pushed to the back of the mind, as too horrible, and too scary to think about....)
PS - (sorry third post!)

I completely agree with your plan to let your husband 'do the talking' when he is next with his GP (or any health professional or 'official'), so they see just what he can and can't do right now at this stage.

I know that when I took my MIL to her second care home for her 'interview', the manager sat us down with a cup of tea, and 'chatted' to my MIL. I 'automatically' started answering for her, and got told to 'schtum' (very politely!), as it was my MIL's ability, or lack of, to answer questions, that the manager needed to hear in order to assess the level of her dementia. We do get into the trick of 'automatically' attempting to 'speak for them', and it can be hard to realise that that is what we are doing.

By the way, in general, I think those cognitive memory tests are quite irrelevant. My friend's father could answer them all perfectly, but the point was he could no longer make himself a cup of tea, prepare his own breakfast, have a shower, get dressed, etc etc, and would wander off down the road not knowing where he was.....THAT was what made him count as having dementia!

A very apt, if artificial term, I read in relation to describing levels of dementia is 'acopic' - it simply means 'not able to cope with everyday life'. If that is there, then, for all practical purposes, they need a carer, and that's that.

(But it's perfectly understandable your husband is scared of having dementia - aren't we all terrified? !!!)
Yes Jenny you have hit the nail on the head. Long term residential care would be financially very hard as they would take his state pension and half his private pension BUT if it happened early enough then I could at least look for a job and equity release would be an option further down the line. I would need a year to build up my confidence and do a computer course. Frankly I think he would need to be drugged/sectioned if he went into long term care.

I have to say I would struggle to offer long term personal care to a man I stopped loving and no longer even like most of the time although I feel pity.

I have no fears of being a widow - it would be a relief right now although yes i would feel a sense of loss.I do feel the man I married back in 1990 would not want to be the way he is now. He always said he would die young because of the drink and I never thought he would be alive into his late seventies.

I think I simply outgrew him and he could not handle it. I should have left back in 2004 but with being totally isolated, and no family support I made excuse after excuse.

So I will hold fire and just do my best to keep him clean and medicated as Gp ordered. But yes I do hope he goes into hospital as I am personally convinced if there was significant brain atrophy back in 2013 it could be dementia now even though in fairness, the drinking is much less - my GP said he would have been dead by now if he had kept drinking a litre of vodka a day.

I do feel he is depressed as I have been really trying to sort out the office as he sleeps on the sofa and I thought a bed might be an option. He has threatened to have me arrested if I move or get rid of his things - old computers printers/vidoes and says he is not going to be around much longer and I can do it when he is dead. He has also said he would have tradesmen arrested if I try to get the house improved and it took 3 years to get the curtain rail back up - he kept saying he could do it. Thankfully I have a friend who is good at DIY and eventually she was allowed to do it. He has also threatened to burn my clothes. He is often saying he was MD of a PLC (30 years ago and in a dirty stained dressing gown and stinky breath how impressive is that now?) and if I tell anyone I will not be believed.I am starting to see him as he is...........I do feel sorry for him .

Well thanks Jenny - I think I am aware this is an abusive relationship and I should have seen the 'red flags' and left a long time ago. But what is done is done and no way can I leave my cats. But I will have a think about the best way forward......