Dinkie's in Denial

[Leymoorlord]

It began, I suppose, about 18 months ago. My lady, who has always been sharp as a tack, runs the home with military precision, clean as a man called David, put a 3" varnish brush away - in her underwear drawer.
The relationship, always lively, became gradually volatile, with waves of depression and unpleasant outbursts alternating with subdued hymn-singing.
I took the precaution of mentioning the 'varnish brush' episode to my GP when it happened, and she confirmed this was 'important information'.
Last October, her own GP picked up on lapses in speech and, reluctantly, Dinkie agreed to be visited by a nurse from the local Mental Health unit, which has gone on until, last month, as I was working late one evening (still part-time consultant in a specialised field), my wife walked into the room and said, "Who are you?"
A 30-minute conversation followed, during which she was shocked to hear that we have been married for over 20 years, have lived in the same property for 15+ years.. It was only when I showed her our wedding photo that she was at all reassured.
Now diagnosed, she remains in total denial and refuses to take her medication. What a fascinating conundrum!

 

[Alicenutter]

Sounds like anosognosia. This means literally not being able to be aware that one is ill. I finally managed through subterfuge to get my husband diagnosed after turned to me and said "But where's my wife?". It took a few weeks, but I learned not to challenge this (it's called Capgras Syndrome, when somebody thinks somebody else, usually their spouse, has been replaced by an imposter) but to go with the flow. Often it helped if I left the house and called him. I had to keep on talking until he could see me for him to believe it was me. My husband was diagnosed with FTD ( a very different beast from Alzheimer's, at least in the early/middle stages) last year. I hope this helps.


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[Leymoorlord]

Thank you Alice...

Sounds like anosognosia. This means literally not being able to be aware that one is ill. I finally managed through subterfuge to get my husband diagnosed after turned to me and said "But where's my wife?". It took a few weeks, but I learned not to challenge this (it's called Capgras Syndrome, when somebody thinks somebody else, usually their spouse, has been replaced by an imposter) but to go with the flow. Often it helped if I left the house and called him. I had to keep on talking until he could see me for him to believe it was me. My husband was diagnosed with FTD ( a very different beast from Alzheimer's, at least in the early/middle stages) last year. I hope this helps.


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Thank you Alice... All very new to me, this stuff.

 

[Essie]

Hello Leymoorlord, welcome to TP, sorry though that you find yourself here...

I would say that it is possibly not so much 'denial', as that suggests an active choice, and more just various aspects of Dinkie's dementia - she may simply be unable to comprehend the situation fully. If she is able to grasp what's happening - and sometimes PWD can 'feel' that something bad has happened even if they couldn't articulate what exactly - then fear is a very common and more than understandable reaction and can make someone retreat away from 'reality' .

This link https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired gives info that is very useful in helping when talking to someone with dementia and also seeing things, just a little, from their perspective. It's a tool that benefits both of you I think as sometimes frustration can take over and having a 'plan' to follow can really help.

There's so much useful info here on TP and support, whatever you need to ask about or have a whinge about ( ) someone on here will have been there, seen it, done that and hopefully be able to help.

 

[Leymoorlord]

Fri 31.03.17
Thinking about what 'Alice..' wrote, we've reached the stage where D wants to sack all the medics, both GP and Admiral.. 'There's nothing wrong with me!!' Another aspect has become clear, that of imagining that, although we have lived in this dwelling continuously for the past fifteen years, D arrived here just six weeks ago, having been recommended to come here as it was supposed to be a quiet place for a break. She had apparently taken the bus from town, walked into the development, to find me (well, it LOOKED like you) standing at the door, waiting to welcome her.
No amount of patient discussion of the ACTUAL course of events is able to persuade her of any different opinion, and, according to D's nurse, one just goes along with such things. At least, that is, until we reach the point where she asks me, 'When will you be going home?'
Heated discussions are, clearly unhelpful, as they end up with D announcing that SHE is going home.. Well, at least the Admiral nurse has an email address; the previous team were very coy about divulging such details.

 

[Leymoorlord]

It's a beautiful Sunday morning, really the first time we've been able to open the patio door and sit out a bit. D had to see an 'out of hours' GP yesterday, with a severe pain at the right side of her ribcage every time she tries to breathe in - pleurisy? She has been very hot for two nights, absolutely refusing to see a medic, so I booked it yesterday, and now we have the medication, we begin the terrible battle to decide what is actually INSIDE the capsule, will it poison me, why am I sweating so profusely, and DID I take the capsule at 8 am??
Amid all this, there is the overriding grief about an older brother, who cannot even stand on his feet, or unwrap a sweetie (CIDP), who has been in residential care for three+ years, after D had cared for him for 40+ years, a batchelor with psychiatric problems, never able to work, never married, and who must nevertheless be visited every other day...
In the light of this, is the moment when you realise that you are nowhere in the same league as this organizing, controlling, cleaning, caring whirlwind - who has now been halted in her tracks, crying out in anguish for her 'mummy and daddy', and screaming to go 'home' (although here has been 'HOME' for the past fifteen years) as she only came here last week, since someone had told her it would be a restful place to go for a break, even though I am definitely NOT the man who was here before...

 

[LadyA]

Sounds like you need to contact the doctors/mental health team again quite urgently. There seems to be quite a rapid deterioration, unless the infection is still affecting her. My husband was also very paranoid, and (with his doctor's approval) I had to hide medication in food like ice cream, either opening capsules and mixing the contents or, with tablets, crushing them to powder.

 

[Leymoorlord]

Repetition

Things have changed a bit lately; not being able to spend time on here, but, when I do, I see that some threads show common features.
Our latest development is to have more than one item in her hand at the time of speaking. Dinkie is, truly, one of the most persistent souls I have ever had to meet. From a small child, aged seven, who, on the Xmas pantomime photograph, has pushed her way to the front line, magic wand in one hand, other fist clenched to match her teeth, 'I was smaller and should have been at the front', apparently (remarried) she has been the same with her two daughters. What I now find is that she is asking questions, misguided questions, which cannot really be answered truthfully without a fearful row developing - the 'there's nothing wrong with me' tactic, but she will continue to ask, re-ask and, twenty times over, until she receives and answer which stacks up to her mental perception of the status quo. The other aspect is that she only came here last week (15 yrs in the same bungalow together) because someone had recommended it as a good place to rest, and all attempts to outline the true state of affairs meet with confrontation. Yesterday, we got, 'Are you married?' and this morning, 'Do you have sugar in your tea?'. When I came back from the fortnightly soccer match, it was 'Oh, you decided to come here, I thought you'd have gone straight home' after which I am shown around the bungalow as you would a complete stranger.
The poor soul had to undergo a second endoscopy lately, having absolutely no recollection of the one eight weeks previously, and, understandably apprehensive, on the two days before, she brought the appointment letter to me no less than fifteen times, reading and re-reading it, perhaps in the hope that the wording might change. Sitting in the waiting area the following day, D had no memory of the letter, accusing me of having arranged this behind her back. Hard yards still to come, I'd say..

 

[AlsoConfused]

Hard yards still to come, I'd say..

I'm sure you're right ... but I like the old advice "Never trouble trouble 'til trouble troubles you".

 

[Leymoorlord]

Repitition

We are having an episode now where we have apparently been away on a 'break' for a few days, but the place that we went to proved to be not very congenial, people were not very nice, and she will not be going on any more holidays. The other feature is that, suddenly, D is not able to read the kitchen calendar. Tablets continue to be an issue, given out by 'folks who aren't really qualified'. What I am finding is that, when that question comes, to which there is no suitable answer, take a breath, count to five and answer in a very subdued voice.

 

[LadyA]

My husband asked me now and then if I was married. I would just say "yes" and not elaborate. Once, he asked what my name was. I told him my first name, thinking that was what he meant, but he said "no, your other name". So I told him. He looked astonished and delighted, and said "Ha! That's the same as me! No wonder I like you!"

 

[Casbow]

I love that LadyA.x

 

[Leymoorlord]

Cold Comfort

Not having been on here for quite some time, I was re-reading some of the helpful comments. Bad sessions seem to come in waves, like breakers in the ocean. There are days which seem almost 'normal', then a comment comes out which shows the mental confusion going on inside. The inability to know which day of the week we are in, that's fairly routine now. Cooking has had to be reduced to the minimum now, so, last Monday, with rain expected within the hour, I saw that I just had time to mow the front 'field'. Dinkie came aout and asked me 'What do you want for tea?' She has NEVER been able to make that decision for herself, not in over 20 years marriage. It came down to a choice between trout fillets and mackerel fillets. We chose the mackerel. Imagine my surprise, 30 minutes later, to go in and find the trout on our plates, served up with frozen peas - straight from the freeser box.. Apparently, she and her daughters have eaten frozen peas like this for over thirty years. What do I know?

 

[Rosie4u]

My husband asked me now and then if I was married. I would just say "yes" and not elaborate. Once, he asked what my name was. I told him my first name, thinking that was what he meant, but he said "no, your other name". So I told him. He looked astonished and delighted, and said "Ha! That's the same as me! No wonder I like you!"

I had this last week for the first time - will try this next time as I was so taken aback I tried to explain that we were married which upset him tremendously.
I wish I could remember to just agree

 

[Everton Annie]

Rosie you will do. I think in the beginning I hoped by reminding him we were married that it would kickstart his memory, I had to learn there is no memory to kickstart. Like Lady A I just say yes and if he asks if I have children I say yes. It is a learning curve and we have to go against our instincts to be honest time and time again. I now go for the path of least resistance whenever I can.

 

[LadyA]

Exactly. Explaining that they are wrong will cause great distress (and often temper). They need to be right, because if they aren't, then it's something else that they have "lost". And there's no point in showing them every little thing they are "losing" to the dementia! It must be frightening enough!

Leymoorlord, I hope at least the mackerel was cooked?

 

[Leymoorlord]

Friday 13.11.17
Here we are, at least we're all still alive.
ALL tablets have now been stopped - by her. When the Admiral Nurse cam last visit, we addressed the 'elephant in the room' and I got D to tell her what had been going on - tablets thrown into the waste bin, cursing the stupid, half-educated consultant who had decided that D is suffering a 'mixed dementia', etc..
She thought she had won a major victory when the nurse told her, that, as she was still of sound enough mind to make such a decision, the department will accept it, and 'I will let the consultant know, but you will go downhill faster without the medication'.
Today, I made the mistake of removing ten kitchen tea-towels from her underwear drawer (and she caught me at it) which led to a terrible altercation because I, stupid pig that I am, should know that tea-towels have ALWAYS been kept in there.

 

[Shedrech]

oh well, Leymoorland, at least the Admiral Nurse and the consultant now know exactly how the land lies
it's tough on a partner and carer when the person makes a decision that seems so unwise, but we all have the right to make bad decisions - we then take the consequences, though, and in this situation, sadly, so do you
shame about getting caught with the tea-towels - apparently in Sparta stealing wasn't the misdemeanor, getting caught was - it was considered a talent and life skill to be able to steal efficiently, and therefore survive! - I just used to apologise about anything, and say how silly I was, so dad could feel OK, and let the matter drop; then sneak back and sort out whatever it was ...... just don't get caught

 

[Leymoorlord]

At present, we are surrounded by a sea of mishaps and difficulties, living beneath a huge black cloud, under which just about EVERYTHING is wrong. This morning, the washing machine broke down mid-cycle, with a knocking noise like a machine-gun. A new machine was needed, so, having looked online we went into town to order the favoured model. Alas, by the time we reached the store, D had forgotten why we were there. On the way out, having placed the order for delivery the next day, D selected a new kettle, because the one in the kitchen had a scratch on it. Cash purchase, but, again, by the time we reached home, D had no recollection of the purchase of either washing machine or kettle. She has now refused ALL medication, and, the nurse, having seen her, has accepted her choice and informed the consultant.

 

[Shedrech]

hi Leymoorlord
something we would maybe throw a curse at then take in our stride becomes quite a fiasco with dementia messing everything around
at least you had an outing and did get to order the machine you wanted - I hope it arrives soon and the delivery folk get it plumbed in OK (would you believe I once had a delivery and they linked up the cold water intake pipe to the hot water tap; lost a lovely mohair cardigan to that, came out doll's size - I was impressed with myself that I realised and swapped the taps over myself)
keep monitoring the medication situation - people do change their minds or forget their previous refusals (no chance of hiding the meds in yogurt or a drink?) - for now, it's one less battle to wage