How to answer a question

[MothersCarer]

My mother is not as far down the road as some of your relatives but I can see some big changes over the last six months.

One of the issues I have should be easy but I cannot work out what to do. Mum keeps saying that she doesn't know why we think she has a problem (she won't say the word). As she thinks you remembers everything and all her memories are correct I can see her point Her ability to process information at a higher level has gone so there is no real point in trying to explain but she gets very cross if I skim over the question. Does anyone have a good answer to this?

 

[Grannie G]

Why should your mother think she has a problem? Is her illness being discussed with her or in front of her.

My husband used to get very defensive if he made mistakes and as far as possible we ignored them.

I only discussed my husband`s Alzheimer`s with him when he recognised his difficulties and became upset about them.

This might help you.

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

 

[canary]

My mum thinks that there is nothing wrong with her too. She has also forgotten that she has high blood pressure, atrial fibrillation, chronic kidney failure and glaucoma. She says that she looks after herself and is very fit. Actually, she is in a care home and doesnt look after herself at all now and can barely walk
Nevertheless, I just say something like - thats really good ....... Im so glad you are keeping well...... you are certainly looking well.........

Is someone pointing out to her that she is having memory problems and trying to "prove" to her that there is a problem? If so, they need to stop. Everyone else around her will know that there is a problem, but she will not acknowledge it and trying to convince her will only cause her distress.

 

[RedLou]

My dad thinks he's well and the only reason he forgets things is because he has 'so much' to remember. He knew about his initial diagnosis of vascular dementia obviously and his journey since has meant it is obvious to him his freedoms are curtailed - taken to hospital when self-neglecting, long-stay ward, now in nursing home. I tend to say, 'Yes I know you feel there's nothing wrong. Unfortunately, the doctors say otherwise,' adding, 'I'm not saying I agree with them.' Sometimes I practise MMSE tests with him to see how he's deteriorated but I say we're practising to improve his scores, for example. IE I try to act as if I'm on 'his side' not the 'doctors'.' But of course sometimes he takes his frustrations out on me and it may not work forever.
You will find the course that suits your situation best.

 

[Amy in the US]

Hi MothersCarer, and welcome to TP. There are lovely people here and a wealth of experience. I'm personally quite new at this but have learned it's a safe place, with people who understand what you're talking about, and no silly questions.

Can you tell us more about the circumstances under which your mother is insisting she doesn't have a problem, please? Is it when someone reminds her/tells her there is a "problem," or at a doctor's appointment, or out of the blue, or some other circumstances? That might help with some specific advice.

As far as a loved one with dementia thinking there is nothing wrong with them, this seems to be all too common. In addition to what you've heard from others here, I can tell you that both early on (before my mother was diagnosed with dementia but was clearly showing signs) and during her hospital stay and currently (now in a care home), my mother absolutely insists there is nothing wrong with her and she can take care of herself. She will tell you detailed stories about how she shops and cooks and cleans and so forth. She's very verbal and compensates quite well; you could have a moderately long conversation with her and not suspect she has dementia (on a good day, if you didn't know her well). But of course none of this is accurate!

RedLou's statement is an excellent example of something I'm personally not very good at: responding in a way where the person's feelings/viewpoint get acknowledged, and then saying, "but, this is how it is" in a non confrontational way. If I'd learnt to do that years ago I would have had a much easier time.

You do have to sort of feel your way through these verbal minefields. What works for one person may or may not work for you, and what works today might not work tomorrow. You never know.

 

[Witzend]

Hi MothersCarer, and welcome to TP. There are lovely people here and a wealth of experience. I'm personally quite new at this but have learned it's a safe place, with people who understand what you're talking about, and no silly questions.

Can you tell us more about the circumstances under which your mother is insisting she doesn't have a problem, please? Is it when someone reminds her/tells her there is a "problem," or at a doctor's appointment, or out of the blue, or some other circumstances? That might help with some specific advice.

As far as a loved one with dementia thinking there is nothing wrong with them, this seems to be all too common. In addition to what you've heard from others here, I can tell you that both early on (before my mother was diagnosed with dementia but was clearly showing signs) and during her hospital stay and currently (now in a care home), my mother absolutely insists there is nothing wrong with her and she can take care of herself. She will tell you detailed stories about how she shops and cooks and cleans and so forth. She's very verbal and compensates quite well; you could have a moderately long conversation with her and not suspect she has dementia (on a good day, if you didn't know her well). But of course none of this is accurate!

RedLou's statement is an excellent example of something I'm personally not very good at: responding in a way where the person's feelings/viewpoint get acknowledged, and then saying, "but, this is how it is" in a non confrontational way. If I'd learnt to do that years ago I would have had a much easier time.

You do have to sort of feel your way through these verbal minefields. What works for one person may or may not work for you, and what works today might not work tomorrow. You never know.

I think the reason a person can't/won't accept that there is nothing wrong, is often largely down to recent or short term memory loss. They can't remember at any given moment that they can't manage X, Y or Z any more, but their older, still present memories are telling them that of course they still do all their own shopping, cooking, cleaning, whatever, because that is what they naturally did then.

On a more immediate level, the first time I really knew my mother had AD and it wasn't just old age, was when she phoned her bank about something, and could not remember, literally the instant she had put the phone down, what they had said.

But within probably less than a minute she had completely forgotten that she had been unable to remember, so of course to her, there was nothing wrong. In a way it is a blessing if the person is unaware - at least that was how I learned to look at it - since at least they are not worrying about it non stop.

 

[MothersCarer]

Thank you for all taking the time to reply. I must be feeling sensitive because the various comments such as "Is someone pointing out to her that she is having memory problems and trying to "prove" to her that there is a problem? If so, they need to stop" make me feel very upset as I have been her only carer over the last four years, since she had a fall and broke her pelvis.

Of course no one is going out of their way to say such things to her. I am sure none of you would ever do such a thing and I avoid such comments but this is her asking a direct question. When she was diagnosed (3 years ago) the doctor asked her if she wanted to know the name of what she had. Mum, feels she can deal with everything in life even though she is a very frail 94 so, of course, she said yes. Sadly, to her, it was like - as she said to me at the time - someone calling her an "imbecile". I played it down but she seems to home in to the many mentions on television. This partly makes her feel better as "so many people are getting it" which I always agree with but it also reinforces her knowledge of what she has. I have to leave her notes at times and keep it as light as I can but she will say "I'm not an imbecile; I can remember". I can pass that off and move on but she is still affronted.

She recently had a TIA. She was in hospital for 3 days, and this question seems to have got more frequent since then. She now has carers in morning and evening just to ensure she is taking her medication - I am sure they are not saying such things to her but she is sure she could manage the meds on her own. We were using a dosette box but she was missing more and more. She likes seeing the carers and I am sure seeing people like this is good for her. We manage that by discussing how much the cat enjoys all the attention

Since she was in hospital she seems to have been more obsessed by it. We have had to put a new lock on the door and a key safe, a bed monitor and a new emergency lanyard with a fall button, but I have explained that these are in case she has a fall. She truly believes she does not need any help, and doesn't recognise her frailty. She does use conversation to attack and I realise she must be feeling very anxious but this one question is so direct it floors me.

I am not a trained carer and may be getting this wrong but I hope this gives a better picture and would welcome anything you have found works.

 

[MothersCarer]

Sorry, should have said the nurse from the memory clinic came last week and Mum asked her the same question. I think the nurse did her best but I don't think it helped.

 

[RedLou]

Thank you for all taking the time to reply. I must be feeling sensitive because the various comments such as "Is someone pointing out to her that she is having memory problems and trying to "prove" to her that there is a problem? If so, they need to stop" make me feel very upset as I have been her only carer over the last four years, since she had a fall and broke her pelvis.

Of course you're feeling sensitive - this is an awful illness that puts incredible emotional distress on the carer. Sounds as if you're doing an incredible job.

 

[Suzanna1969]

My Mum knows she has dementia and has enough awareness to know what is happening to her, which is actually horrific. Sometimes she seems to just accept it, she joins in with conversations, tries to find the words but can't so just ends with 'Oh, you know, well, never mind' and sometimes she gets very distressed and upset. A couple of weeks ago she was distraught, sobbing inconsolably, saying she was going mad and beside herself because she realised she forgotten who I was a few minutes earlier and the horrible realisation had hit her. It was beyond awful. My poor Dad doesn't know how to deal with it at all, I did my best telling her she was just having a bad day and not to worry too much, then luckily the cat came to the back door to be let in so that distracted her a bit. She dotes on my Dad and the cat so creating a distraction involving one or the other seems to work a lot of the time.

I know before long she'll succumb completely and her remaining awareness will melt away, together with the woman she was. It will be easier for her but harder for us. I both long for and dread that day.

 

[Amy in the US]

MothersCarer,

I certainly didn't mean any criticism or personal attack on you and I'm very sorry if I worded things in a way that upset you. My intent was only to elicit more information from you about what conversational situations, if any, are upsetting your mum, or if she is just spontaneously coming out with "why do you think I have a problem?" This was just to try to understand the situation a little better so as to offer more specific advice or garner suggestions from others.

It's perfectly clear that you are a very caring daughter and only want what is best for your mother.

I am sure the past four years as her carer have been very difficult for you. This disease really is awful and those with dementia are not the only sufferers.

I am sure you are not doing anything wrong!

I have seen many other people on here mention behaviour or status changes after an illness or hospital visit, so perhaps that is part of what's going on with your mother.

My best guess is to try some different responses to see what seems to work. When she asks you, "why do you think I have a problem?" you might try:

-Mum, I don't think you have any problems, but the doctors say you need to take this medication, or use this hospital bed, or wear the emergency call lanyard. Sometimes making someone else the "bad guy," basically by shifting the blame, is an effective distraction. When my mother asked me repeatedly why she couldn't go home (when in hospital and also now in care home) I would reply, "I know you'd rather be at home, who wouldn't? However, the doctor says this is where you need to be, just for now." When she would then say, when can I go home? I would reply, "I don't know when you can go home, the doctors will tell us, but I'm sure it will be soon." And when she would ask me, can I go home today? I would reply, "I don't know, but we will ask the doctor. If not today, then probably tomorrow." And then I'd distract her with a snack or something and change the subject.

Does she repeat her question, if you don't answer, or get upset?

I also occasionally get the "I'm not stupid, you don't have to write it down, I don't need a note" sort of response if I leave my mother a note or ask her to write something down. I find that blaming my own faulty memory helps a lot in these situations. So I'll say, I know you don't need the reminder, but writing it down helps me remember, and she will accept that. Or if she starts to get upset about something she can't remember, and asks me, sometimes I will say, well, I don't remember either, and she usually laughs at that or at least lightens up.

I'm sorry this is so hard for you.

 

[mabbs]

My Mum knows she has dementia and has enough awareness to know what is happening to her, which is actually horrific. Sometimes she seems to just accept it, she joins in with conversations, tries to find the words but can't so just ends with 'Oh, you know, well, never mind' and sometimes she gets very distressed and upset. A couple of weeks ago she was distraught, sobbing inconsolably, saying she was going mad and beside herself because she realised she forgotten who I was a few minutes earlier and the horrible realisation had hit her. It was beyond awful. My poor Dad doesn't know how to deal with it at all, I did my best telling her she was just having a bad day and not to worry too much, then luckily the cat came to the back door to be let in so that distracted her a bit. She dotes on my Dad and the cat so creating a distraction involving one or the other seems to work a lot of the time.

I know before long she'll succumb completely and her remaining awareness will melt away, together with the woman she was. It will be easier for her but harder for us. I both long for and dread that day.

Hi, my Mum was the same, she would ask whats wrong with me, I know theres something wrong, you are right it was much better for her when she completely forgot, but it is was very hard to accept she didn't know me, but to see her content and no longer upset made it easier to bear. Take care thinking of you. mabbs

 

[MothersCarer]

Thank you RedLou. Like all of us, I imagine, I am doing my best but that often feels as if it isn't good enough.

Suzanna1969 thank you for your description of Mum. It is such an excruciating disease for everyone and, as you say the coming days may make it easier for them but so sad for us as who they are disappears completely. Mum has forgotten my name in a couple of pressurised situations but not who I am so far. It is such a jolt when these things happen isn't it.

I may find just talking it over gives me a better approach but I think it is more of the "well we think you are doing really well for a lady of 94" - she is very proud of her age.

 

[Amy in the US]

From what I hear, yes, we all ABSOLUTELY have times when we feel we are doing all we can, and doing our best, but that it is not good enough. You are not alone.

And I think your mum does sound that she's doing really well for a lady of 94!

 

[canary]

Hi MothersCarer. Thank you for explaining the situation about your mum better.

Im afraid it was me that you quoted, but I did not mean to upset you and for this I apologise.
I did not intend to accuse you of drawing her attention to her problems - in fact I feel that you are doing extremely well in looking after her. I only wondered if there was someone else (brother, neighbour, care-worker... ) who saying this to her. Unfortunately we do often hear about other family members (not usually the person posting) on here who are in denial about dementia. I think I was probably thinking about my own brother who has only been to see his own mum once since she has been diagnosed and spent the whole time quizzing her about her memory.

Please forgive me

 

[MothersCarer]

Please believe me I didn't think anyone was trying, or even not trying but still upsetting me. I am feeling very raw as I am sure many (all?) of you do at times and I can feel I should know more, better, etc., at any point at the moment.

This is a lovely place to come and you have all been so helpful. As I am sure you have found just talking to someone in a similar position at least makes you feel like a human being too.

I have no idea why she has latched on to this but typing it all out reminds me she has been through many changes over the last few weeks and is no doubt clinging to what she knows while wanting things to be how she remembers them, probably way back when. I expect we will have the question again but I will take a deep breath and do my best to, I think, distract her, as well as reassure her. I'm not sure it will help but you never know.

Thank you all (and I mean all )

 

[Miss shiraz]

Hi there
MIL gets very anxious if the d word is mentioned so we never use it. She knows she has a bad memory so we tell her that she's 84, has a lot to remember from over the years, needs a little help and its not a problem. A diary is a great help WHEN she remembers to use it.
i think they know that something is wrong but don't know what, can't put finger on it, know how to express it, feel anxious, concerned. Distraction is great technique, as they soon forget what you you were talking about, but will often go back to previous topic.
its not easy but the folk on here have so much experience and knowledge they are willing to share, i think we all learn something each day.
keep smiling...... keep posting