Nothing wrong with me....

[Rosalind]

Yesterday, my husband told me some utterly bizarre tale about lots of people who had been in the house, who he did not know. They apparently took 'things' away, including wine. I asked why he let a lot of people he did not know into the house, and he said he did know some of them, just not all of them. I asked who the people he did know were, only to be told 'I don't know'. I think this was all about the fact that while he was all alone in the house because I was out at a meeting he had consumed the only bottle of wine in the house. I came back exhausted, longing for some food and the odd glass, only to find he had had the lot, and was not pleased.
He said they must have drunk the wine. I pointed out that only one glass (a slightly chipped tumbler - very refined) had some dregs of wine in it when I came in, and not a dirty wineglass had been in evidence. I know this level of logic is pointless.
Anyway, I said I did not believe this story, and thought he was making it up. Big tantrums. So I said words to the effect of 'Look, isn't it about time you accepted that you have a condition that makes you get confused about things?' 'What condition?' 'You have something called vascular dementia. It damages parts of your brain so you don't remember things well'. 'I don't' 'Well why do you think we go to see Dr Emerson every 3 months?' 'I don't know' etc etc etc
Does he really not know he is not the same as he was 10 years ago? If so, is that good, from his point of view, or should the idea that he has an illness that accounts for why he gets so confused be introduced, so he has an excuse for it (He normally likes excuses, and is fascinated by things medical).

 

[daughter]

Hi Rosalind,

or should the idea that he has an illness that accounts for why he gets so confused be introduced, so he has an excuse for it

This seems like the kind thing to do on the surface, but I would be asking myself what good would it do if your husband does not remember the information and then you will have to explain it all over again? Will he be devestated each time to hear this news?

In my experience Dad has never known he had a 'condition' - he realised that he had trouble remembering things sometimes and also become depressed (perhaps this was when he realised something was badly wrong?) but his rationality was something that deteriorated fairly early on. He was confused thinking about what key opened which lock, or who had hidden his shaving gear, so I'm sure he would have had immense trouble trying to understand an abstract thing like a brain condition. (Unless this is all just wishful thinking on my behalf - not wanting him to know what was happening to him. )

Does he really not know he is not the same as he was 10 years ago?

I would say that he does not - or if he does he is fighting hard to not believe it - and this is also how Dad was (and still is sometimes) - I like to see it as his desire for dignity and independence still shining through. I'm sorry if this is not what you were hoping to hear. Others may believe that you should try to explain it all to him, and perhaps this may be the right thing for your husband, but reading about your tale just brought back memories of how it was with my Dad, and I still believe we were right not to try explaining it to him. Just my thoughts and opinions, of course.

 

[rummy]

Hi Rosalind,
He doesn't know he has a memory problem or if he ever did, he has or will forget it. He truly believes people were in the house and if you try to convince him otherwise you will cause him alot of angst and expend alot of energy that will be fruitless. If drinking too much wine aggravates his mental state, replace it with non alchoholic wine and maybe he won't know the difference.
My Mom drank entirely too much wine every day which made her condition worse. When she went into assessment, she actually had the shakes from not drinking any.
Early in the disease I could talk to Mom about her memory loss and she could reasonably discuss it but as it progressed it would just make her angry. She thought strangers were in the house all the time and thought people on tv were actually in the room. She was frightened and thought her life was in danger all the time. She left reality as we know it and entered the dimented world. If you want to communicate with them, you have to enter their world. In their world, all those things are real and you won't convince them otherwise.
If your husband says, there were people in the house, ask him how many? what did they look like? was it pleasant? when were they here? Everything but "why", they can't answer why. The point of the conversation is that they feel like someone believes them and that what they are saying and what they feel is being validated. And we also had to do alot of thereapeutic lying. It is so much kinder than telling them they don't remember things or that what they think is real, is totally wrong all of the time!
Also know that what you are going through is so normal for dimentia. We all have either gone through it or will go through it.
Take care and do take time for yourself too !
Debbie

 

[Brucie]

Hi Rosalind

I'd say that, as usual, I believe that Hazel is absolutely correct.

what good would it do

This is the mantra I always quote myself.

I know under normal circumstances I would do things differently, but given the condition of dementia, one has to do what works, not what seems sensible - if the two things differ. If something works, when something 'normal' doesn't, then it becomes sensible, by default.

 

[Cate]

Hi Rosalind

Heart felt sympathies go out to you, its a total nightmare for us the people who do the loving and careing. My mum has AD, and we have never discussed it with her, just our choice, we really didnt think she would grasp what it all meant, though sometimes, like you, I feel like screaming telling her, no, her dentures, hair rollers, telephone book etc. etc. havent been stolen, just she cannot remember where she hid them!!

It's tough I know, and I do think sometimes (not very often though) mum has some grasp that 'things' are not right', but I do feel it would only distress her to tell her she has Alzheimer's, and she would only forget the conversation in 5 minutes anyway, so what's the point. She has already told us that we can bring in as many doctors/psychiatrists as we like, her memory is as sharp as ever!! Um, who was that chap who was here yesturday (psychiatrist!!). Say no more.

I cannot offer you any advice, we all cope in different ways, one thing that saves my sanity is this web site, until I joinned up I thought I was the only daughter in the world to be going through this, its a real comfort to let off steam, ask for advice from those who REALLY are in the know, or just to have a chuckle in the Tea Room.

Sometimes its really is a struggle when you have answered the phone for the 20th time in a day/night to be asked the same question over and over (mums Groundhog day), but we have learnt that its easier to have the same conversation than try to tell mum that you have already told her whatever for the 19th time already.

Cheer up, off to the Offey with you, get another bottled and HIDE IT.

Love
Cate

 

[Rosalind]

Thanks everyone - will give up on saying he has any sort of condition. I did try asking who all these people were, and why he let them in, how long they stayed, and who was with them that he did know, but he had no answers.
In response to Cate's last piece of advice, I have this very day concealed 6 bottles in a wardrobe, and some whisky in the car! I now feel like a alcoholic, but intend to insert just one bottle of wine into the wine rack of an evening, and then go through the usual ritual of asking him to go and get us a bottle of wine. He doesn't often drink whisky, so that is my personal treat - a single malt that I will smuggle into my bedroom for a soothing nightcap after a fraught day.

 

[rummy]

I did try asking who all these people were, and why he let them in, how long they stayed, and who was with them that he did know, but he had no answers.

I know it seems like a futile excercise but I think it helps them to feel that someone takes them seriously. My mom would tell me, "thanks goodness, someone is listening, not telling her she is wrong." You know, they get to a point that they can't function in our world so we have to enter theirs. It's a scarey place and I think they need to feel they aren't alone.

If you would like to read a book on this subject, try "The Validation Breakthrough" by Naomi Feil. Helped me so much and I was delighted to find out that the personnel at my Mom's NH have had training with validation and been to her seminars. Might help, might not but is a good read.

Take care,
Debbie

 

[nice]

Yesterday, my husband told me some utterly bizarre tale about lots of people who had been in the house, who he did not know. They apparently took 'things' away, including wine. I asked why he let a lot of people he did not know into the house, and he said he did know some of them, just not all of them. I asked who the people he did know were, only to be told 'I don't know'. I think this was all about the fact that while he was all alone in the house because I was out at a meeting he had consumed the only bottle of wine in the house. I came back exhausted, longing for some food and the odd glass, only to find he had had the lot, and was not pleased.
He said they must have drunk the wine. I pointed out that only one glass (a slightly chipped tumbler - very refined) had some dregs of wine in it when I came in, and not a dirty wineglass had been in evidence. I know this level of logic is pointless.
Anyway, I said I did not believe this story, and thought he was making it up. Big tantrums. So I said words to the effect of 'Look, isn't it about time you accepted that you have a condition that makes you get confused about things?' 'What condition?' 'You have something called vascular dementia. It damages parts of your brain so you don't remember things well'. 'I don't' 'Well why do you think we go to see Dr Emerson every 3 months?' 'I don't know' etc etc etc
Does he really not know he is not the same as he was 10 years ago? If so, is that good, from his point of view, or should the idea that he has an illness that accounts for why he gets so confused be introduced, so he has an excuse for it (He normally likes excuses, and is fascinated by things medical).

This seems to be quite typical; my mother loses/hides/spends money, misplaces clothes etc and then when she can't find anything that she's hidden she says that 'someone' has taken them...it's always "they". She won't accept anything is wrong, though every now and again she admits her memory is bad and it frustrates her, a lot so she quickly moves on.

Rational and logic are not salient qualities when it comes to this condition, their existence becomes very confused; their wires are totally crossed. I think deep down inside most have a sense that something is not right.

 

[Nebiroth]

I have always thought that the "someone has stolen/hidden/moved it" is caused by an attempt to rationalise an otherwise inexplicable situation.

The person involved simply does not know, or cannot accept, that they could possibly put something away and then two minutes later completely forget about what they have done. So they attempt to rationalise the evidence by coming up with an explanation that (to the rest of us) is even more bizarre.

The login follows - "I have put this away. I know that I couldn't possibly have forgotten about doing that, therefore, the obvious explanation is that someone else has stolen or moved it"

Or "My glasses were there two minutes ago. They aren't there now. Someone else must have stolen them or moved them whilst I wasn't looking" (having completely forgotten going to the bathroom five minutes ago and putting the glasses on the shelf there).

I also think there is an element of denial, in that they do not want to face the unpalatable truth of failing abilities.

It is therefore a comfort to come up with a mysterious "someone" that is doing these things. In many ways it is a wall of unreality.

I think that if I put away my clothes in the clothes cupboard as I had been doing for the last twenty years, and then forgot the clothes or even where the cupboard was, I too would tend to grasp at the obvious explanation; that someone had stolen or moved the clothes whilst I wasn't looking. Sometimes, this is complicated by an old memory of where the clothes used to be kept, but aren't now.

So in some ways, the mysterious "someone" does make perfect sense!

 

[Norman]

Me thinks that Mr Nobody is still around!!
He is still in our house/garden/car,after 11 years.
My Peg will tell all that she has a poor memory and cannot remember things.
She does not accept that she has any sort of illness,I did try to tell her that she was suffering from Alzheimer's disease but she just blanked it out.
She often asks what is dementia?What is Alzheimer's?
I do try to explain what they are,but I will never again tell her she suffers from anything more than a poor memory.
Why should I? She is coping with her poor memory belief and if that keeps her happy? why spoil it
Norman