What do you tell them ?

[Cecilia]

When my dad says he's going mad and is going to have a breakdown and doesn't know how it will end - I tell him he'll be ok, mum is with him and there is always someone to look after him. but he gets upset and cries. He knows things are wrong but I cant tell him he's got dementia and I'm sure he thinks what I say is futile and I am treating him like a child but I don't know what else to say. We eventually change the subject and he calms down. Then says why did I get so silly what's wrong with me ? I usually revert to 'I think you've been dreaming sometimes it gets very confusing doesn't it.' Or you've been in a deep sleep and you're just waking up.

This usually happens during the night. He gets up to the loo every hour or so, so nights are pretty disturbed anyway.

Just thought I'd see if anyone has some clear statements I could use in this scenario. So he doesnt think I'm patronising and knows I care.

[Christin]

Hello Cecelia, I do think that perhaps your dad has some insight and realises that something is wrong, even if he doesn't understand what it is. I do think you are absolutely right to remind him that you care and that he is safe.

My FIL would never accept that he had dementia, but he did accept that he had some memory problems at times. We would often be able to calm him by talking about his memory. It didn't always work, but when he went for respite etc, my OH would say, 'You cannot stay here alone, because sometimes you forget things.' 'The doctor wants you to have some help with your memory.'

Anxiety can be quite difficult to cope with, but is not unusal. I am sure other members will have their own ways too and will along soon.

Very best wishes to you all.

[Grannie G]

I will second Christin , Cecilia.

My husband had insight into his condition too and thought he was going mad, something was wrong with his brain and everyone would think he was `mental`.

I told him he was being treated for memory problems until he asked outright what was wrong with him.
I told him he had Alzheimer`s.
He was shocked and upset but didn`t have full insight, and did think it was a name for memory problems.

[tre]

I am not quite sure why you cannot tell him about the dementia as it is obviously quite scary for him not knowing what is happening to him. If you think using the word dementia will make him flip could you not perhaps say he has an illness which is affecting his brain so that parts of it are not working as well as they used to which is why he has the memory issues. He is looking for an explanation of what is happening to him.
I just keep thinking of it from his point of view of knowing he cannot think straight but being unable to make sense of what is going on. But then I do not know him and it may be that telling him would distress him more.
It is a bit like having a terminal diagnosis and whether or not the patient is told. For myself I would like to know but then with dementia there is the further complication that the nature of the disease makes it difficult to deal with the diagnosis.
This is a tough one.
Tre

[Crikey]

I think it varies from person to person--does more information help you cope, or does it makes things scarier? Some people like to know the details, others don't. For medical things, I very much want to know *everything*. It contains it. My father has always taken the same approach--and so this is what we've been doing with his dementia.

We've talked a lot about what alzheimer's is, and what it does, and about the vascular dementia and the physical processes involved and the effects they have. We've looked at pictures of brains and talked about why some parts of his cognitive processes are wonkier than others. Sometimes we use metaphors: potholes in the road, or roadworks in one part of town making the traffic get all snarled up and blocked in other parts because the flow has changed.

It's not a complete answer: he's not necessarily aware of how much it affects him, and he struggles with a general sense of "wrongness" in himself that he can't always apply this label to. But, for my dad, putting a name on it, and knowing how and why some of the things that happen to him are happening makes it easier to handle--it's less nebulous. His insight varies, from day to day, but when things are wobbly for him he is able to blame "this wretched disease" which reassures him in a way that his old fears of going crazy or stupid didn't.

(I'm not saying this is necessarily the right approach for anyone else--just this is what we do. )

[Josieb]

You might find www.gloriouopportunity.org some help. As it from the perspective of someone with Dementia.

[sue38]

Have you looked as this booklet from the Living With Dementia section on Diagnosis?

They are written specifically for people with dementia. One of the things I like about this one is that it clearly states at the beginning 'You are not mentally ill, and you are not going mad'.

[Canadian Joanne]

My mother absolutely refused to consider that she had Alzheimer's and would get very agitated if we tried to tell her. But telling her she had 'memory problems' was acceptable. She once said to me that she was afraid she was losing her mind. I told her she wasn't, she was only losing her memory. For some reason she found that comforting.

[jeany123]

When my husband was first diagnosed with vascular dementia he didn't seem to notice what the doctors were saying so he never mentioned it ,one day we were at the hospital about his back and the Doc said "I see he has vascular dementia " then the doc went over the other side of the room to get something and Allen said "I haven't got dementia have I" he looked horrified so i said it was just what they called memory problems caused by bad circulation and he accepted this and looked relieved I just say this if ever he mentions it again .

[Cecilia]

Thank you so much for all your thoughts and suggestions. I like the idea of just saying its memory problems and the idea of roadworks in the brain for bad circulation. I'll look at the links as well. Thanks so much. It's good to hear others have the same dilemma.

[scarletpauline]

Jack knows he has Alzheimer's but I don't think he realises exactly what it is, that's fine by me, he knows he has memory problems and we leave it at that.

[nita]

My Mum gets very upset at times and keeps repeating "What's the matter with me?" in increasingly
agitated tones. She actually bangs her fists on the chair as she says this. Nothing seems to calm her down - I tried telling her she has memory problems but it doesn't seem to help. This was worse when she had a UTI. Once, in the end, I told her it was dementia and I wished I hadn't because it was devastating for her: she said "Then I'm finished. My life has ended." but straightaway she'd forgotten again.

At the moment she is in respite, but I am worried that, when she comes home, this will happen again. Does anyone else have experience of their relatives almost going into a fit of agitation, hyperventilating and crying? I really don't know how to calm her and think I might have to just walk away. Any ideas of how to cope with this?

[Cecilia]

Nita this is exactly what my Dad does. But it doesn't last long. I try to keep calm and within minutes it's past. Just so hard at the time. then later we can have some really good conversations. Dementia is the weirdest of illnesses.

[nita]

Cecilia, I'm glad I'm not alone! My Mum also says, like your Dad, "Am I going mad?" It must be terrible to have some insight that things are going seriously wrong with your brain. Like you, I have had some really good conversations with her, when she is quite lucid. One day, she was laughing her head off and answering the quiz questions in the care home. Apparently, she is very good at these. As you say, a strange illness.

Does your father have any medication? As my Mum has got so much worse recently and appears to be in the moderate stage, I wondered if memantine helps with this sort of behaviour?

[banjan]

We are also having this problem with my uncle sometimes he knows he has Alzheimer's and other times he swithers between "there is nothing wrong with me it's all in your mind to am I going mad?" Thankfully he doesn't seem to know just how bad things can get for Alzheimer's suffers
While I'm here is squirrelling things away in unusual places common with this illness? I keep finding things in the most inappropriate places when I visit my uncle?
Love to all
Jan