Dementiaville

annsixty I only had to look after relatives with dementia on a short term basis and I can remember the frustration of dealing with a couple whose dementia was far worse than it superficially appeared.

My sympathy really does go out to people in your position. I can remember at the time wondering how those whose life is tied to providing full time care for a person with dementia manage. I do hope Social Services or others have arrange for you to have at least half a day's respite every week.

Thank you all. One day when I'm more up to it I will write a blog telling just how it is. All these people, and I am pleased for them, who find it so rewarding to look after their loved ones are not in the same state of mind as me. I have just come in from the garden where he has lost his temper with the hose pipe!! I know he can't help it, I have been told so,many times , but it doesn't help me when I live with it 24 hours a day.
Oh that feels much better, I will think about lunch now.

Annsixty that is so sad, especially when we get on a bit and are looking forward to companionship and instead cannot even have a meaningful conversation. So isolating. I hope you have friends or family to talk to.

It is an awful condition, and can take different forms. I used to visit a lonely old lady, until one day she wouldn't let me in, saying I'd stolen from her. She stopped others from entering too, and soon after that was taken into a Care home.
On the other hand, another old lady I visited lived completely in the past, but seemed quite content with her happy memories, nothing upset her.
I agree, best to try to enter their world.

I'd have done the same as you jen.
One of the worst moments of my life was when I visited my mum in hospital after she had had a fall. Her memory loss had been getting progressively worse for over a year and she had been living with my sister mainly but sometimes staying with me for a few weeks.
She looked at me and said (very pleasantly) 'who are you? I haven't seen you before, have I?'
I couldn't stop myself bursting into floods of tears as I told her who I was, but one of the things I won't forget, amongst all the awful memories I have of the 18 months before her death, is the look of joy on her face as she did recognise me and remember. It seemed to bring her back to the real world, for a while anyway.

I haven't seen the programme and wouldn't like to generalise from my own limited experience, but one of the hardest things was that, as annsixty says, my mother had insight into her condition. She knew she was 'going batty' as she put it and found it terribly distressing.
The other thing was that she varied from day to day so much, sometimes she seemed to be able to make an effort and be more like her old self and at others, completely lost.

I would generally go along with the advice to inhabit the person's world, but to me each day seemed different for mum and I had to respond to her in a way which seemed right for her on that particular day.

Ann and Jen for you, and anyone else coping with this awful thing.

Last week I visited my mother-in-law who has dementia. She kept insisting that I go and get my husband, who was supposed to be in the restaurant eating a sandwich. When she decided to get up herself to go and get him, I told her he had died three years ago.
She said, "was I told?"
What would you have done?
I have spent hours pushing her round the home, up and down corridors, looking in rooms for dead people who she insists she has just seen.
Sometimes it's just too upsetting to go along with the lies. I refused to go looking for my husband.
Ten minutes later she thought I was her parents cousin.

Ethelbags1. 'They' are not 'inmates' 'they' are residents.

I know little of dementia but did work as a receptionist at a mental health charity for many years. Mental illness is seldom visible. Telling client from visiting psychiatrist from delivery man could be difficult and anyway I didn't have the relevant training. I never knew what the person standing before me was seeing, what his/her 'reality' was. And who was I to say what was real? I was told by my trained bosses to try to enter their world. (For safety's sake as much as anything)

I remember having a very serious conversation with one gentleman who was about to meet his Russian contact on the city hall steps to get his payment for some spying he'd been doing. Sounded very plausible he did! (He was meeting his mum.)

By entering their world they felt safe. I once brought my morphined up mum back when she thought she was standing on a ledge of a high building and was clinging to the bed rails for grim death for fear of falling. The nurse just kept telling her she was in bed and safe, but this wasn't where mum was in her world. By joining her on the ledge and holding her hand we were able to return to the bed together.

I didn't see the programme but wished I had. What channel was it on?

Towards the end of my mother's life she confused me with her youngest sister and would talk about where we both sat around the family dining table – she was very proud that she always sat next to her father (who died before I was born) but "I" sat the end. I loved, admired and respected my youngest aunt and knew exactly how she would have responded in the same situation – she cared for my grandmother in old age when she became somewhat confused. Similarly, one time when my mother was in hospital for a minor problem she told me how my father had visited her. I realised that it was, in fact, one of my friends – a very kind, courteous, soft-spoken gentlemanly man just like my dad, who had died in 1979. Why should I have disillusioned her and destroyed her happy moment?

I'm with Henry James on this one: be kind, be kind, be kind.

I have recorded this programme as I want some help with how to deal with my dad as his dementia will get worse. I am new to all this and as much as I can read online about how it will progress, it is good to get some tips from those who have gone/going through it which is the best way to deal with someone with the condition and make life easier for both of us. I do not want to leave him after a visit upset and distressed. I have been told it is not what is said to a dementia patient, but how you leave them feeling so to go along with what they are saying sounds like a better way to treat to me and then they are left with a good feeling and not confused and hurt. Any more help is going to be nothing but beneficial to patients, carers, families. I am glad they have done these programmes, I need them.

When I was practising as a RMN I worked for many years in a dementia unit. I was sent on a course entitled Reality Orientation. The speaker impressed upon us the importance of keeping people in reality, telling them the truth at all times. What a load of tosh! When someone asks where his father is, I never told him his father was dead, as the speaker said to do. Why distress him further, it must be like being bereaved all over again! Good for the home on TV. I didn't see the programme, but I may well watch it on catch up.

I've always been bemused by the attitude that dementia patients should always be 'told the truth', it seemed needlessly cruel. Was it some guideline issued by the health department?

I'm glad anyway that the professionals now seem to be changing tack.

Thank you I am grateful for understanding. Like everyone else we never thought it would happen to us. H was an intelligent professional ( a FRICS ) and enjoyed all sports.It is a condition that respects no-one, age,intelligence , social position or anything else.

Sorry to hear that Annsixty, I can see that those ads, which are constantly on tv would be upsetting for the both of you in the circumstances.
I read today that 1 in 14 people will get dementia of some kind, and I suppose it adds to the awareness of it and hopes that people will pick it up in the early stages so that it can be managed or improved.

I haven't seen the programme but I think this belief that dementia patients should be forced to confront the 'truth' of what has happened (husband died etc) is arrogant and insensitive behaviour that shows no respect for the demented person involved.

People with dementia do not live in our world, they live in the world of their dementia and our reality is not theirs. Why should we insist that they have to live in our reality when we will not live in theirs?

I have been official carer for several relatives with dementia and I always did my best to inhabit their world. When my uncle went into care he had a constant worry that he had got an appointment to see the bank manager and was going to miss it. After several weeks of trying to reassure him that he did not have such an appointment, I decided to change tack. I told him that I had spoken to the manager, told him that my uncle was away from home so the appointment had been cancelled and would be rebooked when he got back home again. My uncle never mentioned the subject again. Once he got an answer that accorded with his reality he was able to relax and stop worrying.

I mentioned this to a member of staff, who gave a sigh of relief. She said that people, mainly relatives, constantly correcting resident's 'errors' just left their family member distressed and confused and that care staff were encouraged to go along with residents thought processes as long it did not cause distress or behaviour that endangered themselves or others.

Oh, ann, how very sad for you both...

I didn't watch this as I am living with an H who is some way along the dementia route, and he is well aware what is wrong with him.We are particularly upset at the moment with all the adverts for more research funding for the Alzheimer's society which says there is no help and no cure and it will only get worse. I can't switch off and to divert his attention is so obvious.To live with it as I am doing is something I would never, ever, wish on anyone.

I liked this programme and found it interesting but upsetting and I must say I had tears in my eyes at the end. It's just so terrible and we don't know how we will end up.

I liked the way the staff wore pyjamas for the night shift, to let their charges know that it was time to be in bed. I was pleased to see so many smiles, quite unusual for such a place! I hope if dementia happens to me, that I shall be treated in this way.

Thanks, ana.

Channel 4, thatbags.

I think TV programmes can usefully be used to educate people about things. If you want to call educational programmes entertainment, go ahead, but it seems a feeble reason to object to them. In fact, isn't education one of the things the BBC is supposed to do? Was it a BBC programme?

We spontaneously did this with my MIL when she was in an earlier stage of dementia - went "with her" what ever she said. So her son (my husband) "became" her brother and they spent many a happy hour together reminiscing. I'm amazed actually that it's something that people have to be told is a good idea. It just seems like an obvious way of dealing with it.

Why would you tell someone something (in the present) when you know they have no memory ...? Just doesn't make sense to me.

Didn't find it distasteful in any way, in fact it was full of humanity and lovely to see so many smiley faces on the old folks.

I don't find harrowing TV news reports entertaining, nor are many 'entertainment' programmes all that entertaining. Dementiaville is a well-made informative programme that I have already learnt from, and it is ill-informed to assume that people with dementia cannot give consent nor attend to their own affairs for at least part of their lives.