Are we all missing something?

[stanleypj]

I keep reading on here about people with dementia who drive their family carers up the wall yet, when faced with professionals, are able to switch immediately and present as people who don't really have any serious problems.

Now my wife would probably answer 'fine' if asked by a professional how she was, but it would very quickly become clear that this was just a stock response. As I understand it, these people are much more convincing and professionals often seem to be fooled into thinking that family members are grossly exaggerating the difficulties. At least that's what is reported on the threads and there are always other people who quickly come along with similar reports from their own experience.

This is clearly incredibly frustrating for carers who are trying to get support.

But are we missing something here? If people with dementia are capable of this change in presentation, what else might they be capable of? Could they possibly be persuaded to try and 'switch' more often, to the benefit of their carers, and themselves?

I can anticipate the response: It's just a random result of their brains being damaged. But that doesn't really begin to explain the phenomenon does it?

 

[Saffie]

I think a lot of stock responses are from sheer habit. My husband will always greet a person approaching him in his nursing home with a polite greeting but is not able to carry on any sort of conversation. Equally he politely says please and thank you for tea etc. but cannot differentiate between yes and no.

 

[attorney]

I have noticed this too. Mum is staying with my brother atm and wants to be out of the house as often and as much as possible. There have been times when it has been impractical, eg 8pm at night when the children are getting to bed...and they have had to lock the doors to prevent her leaving. This is after she has been 'out' with them for 3 or 4 hours during the day. She complains daily that never goes ANYWHERE and hasn't been out of the house, when she has. They often have to take her out to calm her down. When speaking to someone on the phone recently, she was heard to remark "oh yes, it's lovely here, I go out every day". My brother was astounded.

 

[stanleypj]

Saffie, I know what you mean about stock responses and I'm quite prepared to accept that this is sometimes the answer. But I read of situations where the professionals suggest, after talking to the person for some time, that they can't see what the problem is.

 

[jaymor]

I think some things trip of the tongue without thinking. I can remember when I was at work that because I dealt with people all day, the question 'How are you' was asked of me a dozen times a day and my answer was always 'Fine, how are you?' A lot of the time I was far from fine but not going to tell them I felt sick, had a headache or had had just about enough of working for the bank. The right answer stops a question dead in it's tracks. So how does the dementia sufferer who can do very little for themselves, is in a constant state of agitation and confusion realise that professionals and those not taking care of them can be told something different and be presented with different behaviour that gives them the advantage of presenting as non dementional, if that is the right word for not having dementia?

My husband could be really challenging to the extent that doctors and police were called to the house frequently. Just the sight of the police officer's uniform would stop him in his tracks and when he was told the doctor was here, again he became so complient it was unbelievable. Minutes earlier he was brandashing knives, banging his head up walls, punching and kicking walls and furniture and threatening all manner of things. I used to feel terrible for calling them to someone who was sitting in a chair smiling at them. I did apologise to one policeman as he was leaving and he said he was not fooled. They often sood outside of a house where they had been called to for a dementia sufferer and knew that within 5 minutes it would all kick off again and they would go back in. he also said never be afraid to call us, we know that crisis help in this area is not good and most of the time all you have are us. Gone off topic here a bit but it does amaze us all how dementia patients can do what they do and no one seems to know how they know who to impress and who not to.

Jay

 

[Witzend]

I think it depends a lot on the person and the stage they're at, but IMO yes, some of them can control some of their behaviour when they want to.

Take 'nastiness', which a lot of us put up with, or have done. Just once I got really tough with my mother - said I wasn't going to listen to it and if she didn't stop it NOW, then I was going home at once. And she did stop, because she could see I meant it. She wasn't 'nasty' all the time, but looking back I sometimes wonder why I didn't take this approach more often, rather than listen to very upsetting accusations about my family.

Answer, because she'd get all upset, and very likely tearful, because as she saw it, I'd been nasty to her. And I couldn't face it. But she'd always been like this - it wouldn't matter how much she herself was in the wrong, if anyone said one word to her, they were the Big Nasty Unkind Beast that made her cry. And I'd had years of this sort of thing affecting my behaviour towards her.
If a carer is a close relative, there's nearly always a lot of emotional baggage/past history playing a part.

Having said that, I do think that carers are often brainwashed (if I can use that term) into thinking they are obliged to put up with whatever is dished out, however nasty or abusive, because 'it's the disease' and 'they can't help it'. They must never get cross or say anything, even though that person can almost at the blink of an eye behave like a sainted angel with professionals or casual visitors, who then think the carer's wildly exaggerating or making it all up.

I did say 'some' behaviour, though. I don't think there's a single thing I could have done to stop my fil flying into his terrifying rages - I was already walking around him on eggshells, with kid gloves on, and in just about every case the rage was triggered by something (usually tiny) over which I had absolutely no control.

 

[choccy]

It's deffinately odd. My Dad talks mumbled up 'dementia' talk to me (although I understand him) and everyone else including health professional's. Everyone except my son... its bizarre. He can hold a very normal conversation with him and he also remembers things from his last visits etc. I watch in amazement. I can see Dad is really concentrating when he does it, he is trying so very
hard.
I think he is conscious of what he's saying at the time. He has always tried to be a good roll model for his grandson and he would be mortified if he thought my son knew of his dementia.

where as he's never given a monkey's about authority, so doesn't really care what they think.

 

[Salli]

Maybe it's to do with level of alertness and being able to relax more with family/friends and therefore not needing to put in as much effort. Professionals are people they are programmed to be a little in awe of, perhaps (well, my mum is) and so some inner voice is saying they must say the right thing. Last time the psychologist (nice new doctor was all she was told) visited mum at home, she'd changed clothes, left the crossword part completed (done with aid of thesaurus which was sticking out from under her chair) on the coffee table where it would be seen. I had to sort her money and in her handbag was a newspaper cutting of David Cameron with his name written above! Needless to say, she reeled off day, date and name of prime minister off pat, and when asked how she was she smiled and said very well, thank you. If I asked her today, she would tell me she was having the worst day ever and she would have no idea of date, prime minister etc and won't have touched a crossword since and I know she is wearing same clothes as last Friday because neighbour has just told me.

 

[stanleypj]

Jaymor, thanks - not really off-topic at all. Goes to the heart of my question. How do they know? It clearly isn't just random. That's my point. I don'e expect anyone to come up with an answer but maybe the first step towards some kind of answer is an acknowledgement of the fact that some people with dementia are able to do this for a lot longer than it just takes to respond 'fine'.

Witzend, even allowing for what you say about your mother's nature (even before dementia) I bet there are few carers who haven't sometimes been tempted to respond to nastiness with the kind of response you used and if it works, even once, that again challenges the orthodoxy.

choccy, thanks - another fascinating example. If he can do this with even ONE person why can't he..........?

Salli, this behaviour involving a lot of awareness of what 'the right thing' to say also seems very interesting. It took a lot of planning on her part.

Thanks for all your responses. Real food for thought.

 

[Padraig]

I ask myself; "What if I was informed that I had AD, how would I feel?" I'm sure I'd be wracked with fear. The fear of being 'put away' and so would hide the fact from anyone I thought was unaware of my condition.
One day we were in town when I noticed three young women approach. As we hadn't seen them in almost a year, it was not till they were close up I could see they were our grand daughters. If I had problems with recognising them, imagine what it must have been for my wife?
In an effort to convey to them that their Nan had memory problems I asked Jean: "What day is it, I've lost track of the days?" Her reply: "If you don't know I'm not telling you!" There were other amusing incidents with her trying hide her illness from those that were unaware.

 

[stanleypj]

Padraig, that's interesting in itself - that she had the ability to make a conscious decision to hide the fact from anyone who she knew, or had worked out, was unaware of her condition.

 

[iamjanx]

hello stanleypj
you made me smile, in a nice way, you have hit a nail on the head as my mother is the same, she has dementia, she had a bad fall on saturday and was taken to A&E, the nurse appeared and asked mother how are you feeling, fine said mother, with blood pouring down her head and came over as normal
but there are tests that the professionals do and they do pick up on the state of mind
my mum had an assessment a few weeks ago, she didn't answer many and could not even remember the address
so although they come over to others as being quite normal, i think that they know what signs to look for
i am a carer for my mother, we are in the process of trying to find a nursing home as its getting too much for me

 

[amicalia]

Don't know if this is relevant, but I find it interesting that my mum doesn't really bother about trying to remember anything (names, dates, etc.) with me, I see this as her relaxing, even though she isn't sure who I am, she seems to know I'm someone who won't mind about her getting things wrong, we'll just have a laugh. There are some people she is much more wary/careful with.
But also - when she initiates a conversation about a person or a remembered event, she turns to mumbling very quickly, so it's hard to have much idea what it's about, but when we look at a book of art photographs, her vocabulary suddenly comes up and she finds some words that make sense much more of the time, refers to quite specific things, colour, light, etc. similarly a discussion on the topic of education/parenting/children, she makes more sense again and manages to convey her meaning. These are her favourite subjects and they seem still to stimulate more successful communication.

 

[kingmidas1962]

My dad has 'lightbulb moments' - sudden clarity which I always make the most of as its like having a bit of him back again. I had some particularly bright shoes on the other day and he stared at my feet for some time and said 'I like your shoes - very smart' .... and then he was gone again .... I've no idea what initiates them - but like so many others on here his response to the question 'how are you?' is always 'fine'

When he was first diagnosed one of the things he used to laugh at was getting yes and no muddled up - after a while he didn't realise he got them muddled which resulted in more confusion - but we always tried to handle it with humour - and still do.

We can always spark a conversation about golf - he told me off back in the summer for mispronouncing Jose Olazabals name! (sorry if I spelt it wrong)

 

[stanleypj]

Thanks iamjanx - I'm sure that professionals eventually get the true picture as reagrds memory and functioning. I doubt they ever get to see what some people with dementia can be like at home.

I'm glad amicalia that you've reminded us of the importance of recognising the range of many people's lucidity. See them in some situations and you would think they have very little language but then certain things, as you say, can show them in a much more positive light.

And I'm sure Kingmidas that many of us are really boosted by the occasional light-bulb moments.

 

[jasmineflower]

How true this all is! My MIL can sit there in two week old clothes, mumbling, incontinent and aggressive but the minute someone comes through the door on goes the "public face". The Alz Soc support worker came to visit my FIL the other week and as she came in my MIL stood up, gave her a kiss and said: "How are you? It's so lovely to see you again, I'm so glad you popped in". She certainly would have appeared normal to a friend. It didn't work this time though, as she'd never met the lady in her life before You have to laugh!

 

[amicalia]

Oh another really odd thing - twice since my mum's memory became really bad, she has noticed me heading off somewhere forgetting my bag and reminded me! Each time I've been stunned!

 

[nicoise]

All the "making an effort" for medics, professionals, other people rings so many bells for me.

Even when my mum was in a very poor state and down to what turned out to be her last two weeks, she received two separate visits from old friends where she managed to "perform" incredibly well given how debilitated she was by then.

I guess there just may remain a bit for some people of ingrained training that forces this conditioned behaviour when the rest of the time it seems impossible, or lost.

I have often wondered at this; and at times wished it could have been used in communicating with me. But perhaps equally to feel safe, relaxed, comfortable to just be yourself without performing was its own compliment....

 

[Kathphlox]

I'm thinking that too, no performance is needed when you are surrounded by people who you know love you and you can relax with.. or not.. if you're feeling a bit belligerent

 

[FifiMo]

I have had some insight to this from the side of my mother's psychiatrist. My mother had been hospitalised several times and like others have said, went spontaneously from being in an almost comotose state where we had literally talked about whether to call her minister and funerals etc. to leaping out of the bed when the OT arrived to assess what her needs were and what might be possible for her to achieve. She skipped in and out of the bed jumped up and down doing start jumps, you name it, immediately the person left she was in bed back to her previous state again!

One day her psychiatrist contacted me to say that the ward doctor had referred my mother to him and he had been to carry out an assessment. He said that he was phoning to tell me that he had diagnosed that my mother no longer had the capacity to manager her own affairs. I said to him that I wasn't surprised and that we had been trying to point this out to everyone for a long time but that none of the professionals seemed to have been paying attention. He explained that it is also very difficult for them because they are aware that people try to impress and are often fearful of being told something they can't cope with. He said the biggest problem is that they have to try and do assessments in just a few minutes - appointments are say 10 minutes long and a person can in the early stages of dementia, act out and impress for this length of time. He said that things become easier in the situation my mother was in because they can't hide their dementia for 24 hours a day and so the full extent of the problems become visible very quickly. The conversation was reassuring to me that these people are not against us but are constrained by the system in the same way as the rest of us are. I told him this and said it was a pity that time hadn't allowed us both to get to a conclusion about my mother a long time ago.

So there you have it, the view from both sides that I finally got to see.

Fiona