Does the denial stage ever end?

[LHS]

My mum acknowledges she has memory issues and cannot do all the things she previously could, however she is still essentially in denial about her Alzheimer's. She refuses to take any medication or accept any external emotional or practical support. She has always been independent and not wanted to rely on anyone and this wretched disease is making these feelings even stronger.

I have learñed to go with the flow on many things now and focus on trying to do enjoyable things together. However I know that maybe in the next 12 months or so, my mum is going to need to have some kind of home based help as she lives on her own and I can't be there all the time. Is the denial thing a stage that most sufferers go through and how often does it change to a more accepting attitude, or does it usually just stay belligerent/in denial?

 

[karaokePete]

I always find the posts that state people are in denial a bit difficult to understand beyond accepting that the loss of cognitive function simply leads to an inability to realise that anything is wrong. Of course, people may just have a fear that they will be classed as going mad with all the social and personal stigma that may entail.

My wife is just a few years in since her diagnosis of MCI and then Dementia. The only time she denied her dementia was in the immediate aftermath of the diagnosis being delivered, when she was in shock, but she soon accepted it and she is keen as mustard to take her meds etc., even if I have to order the scripts and remind her to take every dose. My wife has once or twice asked me if she really does have dementia and sometimes refers to herself as mad so she needs constant reassurance and correction about the ‘mad’ thing. One thing that is a bit of denial with my wife is that she thinks that she still does everything she used to do just because it gets done - she doesn’t seem to realise that I have had to take over just about everything. Dementia is a strange syndrome and that is a common thing.

My wife is lucky in so much as she has me working hard to keep her life much as it was before. I know she too would need outside help if she were alone so I just hope I can keep going for her.

 

[Whisperer]

My mum acknowledges she has memory issues and cannot do all the things she previously could, however she is still essentially in denial about her Alzheimer's. She refuses to take any medication or accept any external emotional or practical support. She has always been independent and not wanted to rely on anyone and this wretched disease is making these feelings even stronger.

I have learñed to go with the flow on many things now and focus on trying to do enjoyable things together. However I know that maybe in the next 12 months or so, my mum is going to need to have some kind of home based help as she lives on her own and I can't be there all the time. Is the denial thing a stage that most sufferers go through and how often does it change to a more accepting attitude, or does it usually just stay belligerent/in denial?

Dear LHS.
The issue you raise is a tricky one. When my mother first started to have memory problems the diagnosis at the Memory Clinic was Mild Cognitive Impairment. My mother refuses to return to the Memory Clinic although her memory continues to get worse. I use to regard this as just a refusal to accept her condition, but I sought guidance on this forum. There is a technical phrase for it which escapes me and no doubt another member will supply it in due course. Basically as the memory declines for some individuals so does the ability to recognise the reduction in their mental capacity. Not really denial more just an inability to fully comprehend the nature of their condition. My thread also got me the advice about adopting a “compassionate caring” style. Please search for the thread with that title. I had to accept my mum wasn't in denial but just did not fully comprehend what was happening to her. Truth be told she almost certainly has Vascular Dementia for which no treatment is available beyond trying to control the blood pressure. Going back to the Memory Clinic would do very little for my mum. I live with her, like Karaoke Pete I have taken on most of the work required to allow her to believe her life is unchanged. One day external help is going to be required but for now we cope, mum is safe and well as she can be.

I attend a local Carers Group alone. This week a new person joined whose partner has Vascular Dementia. Interestingly he fully accepts his condition, talking about it continuously. The result is he suffers a high degree of anxiety and worry, from which he apparently cannot get relief. It made me appreciate that however frustrating my mum’s “understanding” of her condition is, it is infinitely preferable to that man’s position.

You do not live with your mother so eventually some type of outside support will be required for her. Can you discuss this with her GP? Did you have any input on getting her the Alzheimer’s diagnosis? Are there any LPA for finance and just as importantly Health and Welfare. If not have you raised this with her? There are several good threads I have read about how to get someone to agree to do this who may initially be opposed to doing so. Whatever you do arguing with your mum will get you no where. Dementia does not do logic very well most of the time. Without knowing the answers to some of the above questions it is hard to offer further comment. One of the system facilitators should respond to your thread as you are a new member.

 

[canary]

One of the little talked about symptoms of dementia is anosognosia. It is not denial, it is an inability to comprehend that there is a problem with their health. Not everyone with dementia gets it, but a lot of people do. My mum had this and although she would accept that her memory wasnt very good, she dismissed this as being something all old people get. As time went on and she developed more health problems she refused to accept that she had any of them. She used to tell me that she was as fit as a fiddle and didnt have anything wrong with her - in reality she had arthritis, heart failure, atrial fibrillation, high blood pressure, loss of mobility and glaucoma, but she wouldnt accept any of it.

There is no point in trying to reason with her or argue with her - it will just make her angry. You will have to do things by stealth and use little white lies. Never use the term dementia or Alzheimers - I only ever talked about mums "bad memory" so her Alzheimers medication became her "memory pills". I believe that some people have described them as vitamin pills in order to get their PWD to take them. The time when she was living at home was a nightmare because she still had enough capacity to understand about carers and other forms of help and refused it all. Half the time she wouldnt even let me in because she was (in her mind) perfectly OK and didnt need any help at all. Eventually, as the dementia progressed she became more compliant and accepted help, although by this stage she was in a care home, but she never accepted that she needed this help. She would complain about it, telling me that she didnt need any help getting dressed (after discovering that she was wearing four pairs of knickers!) and I would say "of course not, mum - but its nice to be waited on and at your age you deserve a bit of pampering", so she would grudgingly accept it.

 

[Grannie G]

My husband had experienced caring for my mother with Alzheimer`s for several years . We didn't tell him of his diagnosis years later, but told him he was getting treatment for depression and memory loss.

A year or so into his dementia he asked what was wrong with his brain. This is when I told him it was Alzheimer`s. Although he recognised the term, he had no concept of the condition . He had always believed in alternative medicine and so we spent a fortune on consultations and remedies . I remember he heard about oily fish helping memory so he had sardines on toast every day for breakfast.

At his last MMSE test when he was asked to write a sentence, he wrote `I am getting better`.

It wasn't`t denial. It was complete lack of understanding.

 

[Bunpoots]

Hi @LHS

My dad also developed anosognosia. He originally accepted the diagnosis of Alzheimer's and vascular dementia and took his pills. About a year or two later he suddenly said he didn't need to take all his meds as there was nothing wrong with him!! In reality he had high blood pressure, heart failure and dodgy kidneys as well as his dementia.

Like others on here I had to get him to take the pills by thinking up a reason he should (not easy when someone thinks they're perfectly healthy).

Dad is a lot further along his journey now and lives in a care home following a recent stroke, pneumonia and cellulitis- but he still thinks he's perfectly healthy and doesn't need the carers to help him. If he refuses they just go back a little later and try again. When he was living alone it was more difficult but I found some wonderful carers who could usually persuade him to take his meds and if he refused they'd try again on the next visit.

As you rightly say - you have to go with the flow...

 

[Bunpoots]

At his last MMSE test when he was asked to write a sentence, he wrote `I am getting better`.

That must have been heartbreaking

 

[marionq]

@canary and @Bunpoots you both raise a point which has been developing with us for some time. That is how to get someone to take medication who doesn't want to or doesn't think he needs it.

I'm only about 50% successful with my husband's glaucoma drops but with his anti depressants which is the only other medication he takes I have another approach. I change the reason for taking them according to how he is feeling that day. So if his skin is itchy they are antihistamines and if his knee is particularly painful they are painkillers. I think I have even said they are to cure his CKD when stumped for a reason.

I feel no guilt at all for this because his illness makes him irrational and I have to create the closest thing to the real world I can which means he needs that medication. Of course he remembers nothing from one day to the other so sees no contradiction.

 

[Grannie G]

That must have been heartbreaking

It was @Bunpoots. The doctor and I looked at each other with mutual sadness.

 

[LHS]

I always find the posts that state people are in denial a bit difficult to understand beyond accepting that the loss of cognitive function simply leads to an inability to realise that anything is wrong. Of course, people may just have a fear that they will be classed as going mad with all the social and personal stigma that may entail.

My wife is just a few years in since her diagnosis of MCI and then Dementia. The only time she denied her dementia was in the immediate aftermath of the diagnosis being delivered, when she was in shock, but she soon accepted it and she is keen as mustard to take her meds etc., even if I have to order the scripts and remind her to take every dose. My wife has once or twice asked me if she really does have dementia and sometimes refers to herself as mad so she needs constant reassurance and correction about the ‘mad’ thing. One thing that is a bit of denial with my wife is that she thinks that she still does everything she used to do just because it gets done - she doesn’t seem to realise that I have had to take over just about everything. Dementia is a strange syndrome and that is a common thing.

My wife is lucky in so much as she has me working hard to keep her life much as it was before. I know she too would need outside help if she were alone so I just hope I can keep going for her.

 

[LHS]

Thank you so much to everyone who has provided some real thought provoking and useful comments. I have only just joined this forum and it feels massively supportive

As I don't live with my mum it is more difficult to help support and smooth over some of those daily little things that she finds difficult. I know that I will be going over more and more frequently as time progresses but I also know that I won't become a full time carer (just like I knew I would never want to have children).

I do think part of it with my mum is still actual denial (she is an academic and has always been very strong willed) but clearly she is also suffering from this lack of understanding of her condition - someone posted the posh word for this ana...something! She is also physically still very able.

I did manage to get the LPA stuff done last year, what a joy that was going through the questions....and have already taken over most of my mum's day to day financial payments.

On the health side my mum steadfastly refuses to go again to the memory clinic, won't take any medication and in fact has an instant negative view as regards anything medical including seeing the GP. I have learned there is no point trying to raise these issues with her as I will be shot down in flames and we both get upset, so I have learned to go with the flow. It breaks my heart that her condition is progressing more rapidly due to no medication but she will not take any.

However the time will come I think within the next 6 months where she will need some help coming into her home. I am not looking forward to that conversation. With some things now I just tell mum what is going to happen rather than give her a choice but don't know quite if that will work for this. To be honest it feels sometimes like you're damned if you do and you're damned if you don't - can't win!

 

[karaokePete]

If it’s any consolation to you @LHS, the medication doesn’t work for everyone and even when it does the effects are not thought to last long, even though people are left taking it for many years in some regions.

My wife takes both Donepezil and Memantine and, while these meds seem to help, she continues to decline, albeit slowly.

 

[try again]

LHS we seem to be in a similar place in the journey. My mum has a memory clinic on the 15th and is still prepared to go though she is saying this is the last time (and the first).

 

[Witzend]

Depends on the person, I think, but as far as I've ever heard, it's quite common. Though often not 'denial' as such, more that the person can't accept that there's much wrong with them, since they can't remember at any given point that they can't remember anything, or that they can no longer manage all the things they used to - shopping, cooking, cleaning, managing money, etc. Of course they can still do all that!

My mother was told by her GP quite early on that she had Alzh., and accepted it from him (GP to her being = to God) but had forgotten by the time she got home maybe 15 mins later. And it was no use reminding her - she'd just get cross and deny it - so we soon stopped - just got on and did/arranged what was necessary, inc. activating the Power of Attorney - she wasn't a bit happy about that despite having set it up herself pre dementia, but a large sum had already gone missing so it was overdue. Though just getting on and doing/arranging is often easier said than done, I know.

By the time she needed 24/7 care several years later - zero short term memory, could no longer make herself a cup of tea, etc., she still (genuinely I think) thought there was nothing wrong with her.

 

[Duggies-girl]

My mum acknowledges she has memory issues and cannot do all the things she previously could, however she is still essentially in denial about her Alzheimer's. She refuses to take any medication or accept any external emotional or practical support. She has always been independent and not wanted to rely on anyone and this wretched disease is making these feelings even stronger.

I have learñed to go with the flow on many things now and focus on trying to do enjoyable things together. However I know that maybe in the next 12 months or so, my mum is going to need to have some kind of home based help as she lives on her own and I can't be there all the time. Is the denial thing a stage that most sufferers go through and how often does it change to a more accepting attitude, or does it usually just stay belligerent/in denial?

We never use the D word or the A word. Dad just has a slight memory problem and he takes a memory pill once a day.

The memory clinic people have told him twice that he has alzheimers straight to his face and both times he understood and accepted it until the person was out of earshot, then he told me that 'they don't know what they are talking about' So that was the end of that. I just go with the flow now as it makes life easier.

 

[Delphie]

My mum never accepted or agreed that there was something wrong. Never. However I suspect she kind of knew something was up because she started congratulating herself on how excellent her memory was.

Any suggestion, direct or indirect, that she wasn't ok or needed help was met with fury.

It was a really difficult period because her memory was incredibly poor and she needed a great deal of support. Trying to get her to accept help proved impossible, though, and in the end I had to con her into residential care.

 

[Sirena]

I felt the same as you, LHS, I never wanted children and I knew I'd never be a carer for my mother.

However the time will come I think within the next 6 months where she will need some help coming into her home. I am not looking forward to that conversation. With some things now I just tell mum what is going to happen rather than give her a choice but don't know quite if that will work for this. To be honest it feels sometimes like you're damned if you do and you're damned if you don't - can't win!

I think you will have to do what you describe here - arrange it and tell her what's happening. I found it was the only way to move things along. I did wonder if she would accept carers coming in, but I never used the 'carer' word. I told her a nice lady was coming to help her with the things she found difficult - carrying shopping and getting the cat to the vet. Of course the nice lady helped her with everything else too but we didn't talk about that. She actually liked having the company so it worked out okay.

I agree you cant win - and never look for thanks because you won't get any. You just have to reassure yourself you're doing the right thing at each stage.

 

[Andrew_McP]

I can't offer you much hope either. My strong, independent, and rather feisty mother started angry and in denial and is still there three years later much of the time. She will admit to struggling with her memory, but it's best to just let her get on with believing everyone and everything else is the problem, not her fading faculties.

At least you have the PoA stuff out of the way. (Getting over that hurdle with a mother in denial was more down to pure luck than judgement here). So when things deteriorate you'll be able to 'force' help upon her.

The only way I managed to get my Mum to let me help, let alone anyone else, was to be just as stubborn as her. The more I was around, the more opportunities there were for her to realise that having help could be useful. I think it also helped her to have someone to be angry at... to help her get her frustrations and confusion out of her system, and it could (still can) lead to periods of quite pleasant calm afterwards.

Perhaps if I'd tried harder to get outside help involved she might have eventually tolerated it, but the battle for acceptance wore me down quicker than her, so I just got used to dealing with everything. It's not always much fun, and I appreciate it's not a path suitable for all. I was just blessed with rather more tolerance than some, having had to put up with Mum's (understandable in retrospect) single parent moodiness for the first 18 years of my life. Best life lesson she taught me.

Good luck and enjoy the good times when they're possible. The early stages of this decline are so hard to help with. Sometimes I get a bit down with the struggle now with double incontinence issues, but it's still a darned sight easier to deal with than those earlier stages. I'd rather be on the inside struggling to get things done than on the outside, worrying constantly about what's not getting done.

Hopefully you'll find a way to involve external carers more effectively than I did. I sometimes think it might be down to luck; finding the right people at the right time with the right approach. Once some help is accepted, more ought to be easier to add. But like most projects, it's getting started that's the problem.

 

[Margi29]

My husband had experienced caring for my mother with Alzheimer`s for several years . We didn't tell him of his diagnosis years later, but told him he was getting treatment for depression and memory loss.

A year or so into his dementia he asked what was wrong with his brain. This is when I told him it was Alzheimer`s. Although he recognised the term, he had no concept of the condition . He had always believed in alternative medicine and so we spent a fortune on consultations and remedies . I remember he heard about oily fish helping memory so he had sardines on toast every day for breakfast.

At his last MMSE test when he was asked to write a sentence, he wrote `I am getting better`.

It wasn't`t denial. It was complete lack of understanding.

How terribly sad, at mums last MMSE test, she wrote ' I love my family '
Cruel disease, sending my best wishes to you.

 

[whatproblem]

Hi LHS. My Mum was in denial for a few years (which is why I chose this cryptic username) but eventually the condition got too bad for her to ignore. She sometimes forgets what's wrong with her (I suppose that's the anosognosia) but forgetting it is different from knowing it and denying it.

That said, there are still flashes of defiance. Mum lives alone and says she is ready to move to a care home, but I know that when she gets there she will probably complain that she is surrounded by "old people" (i.e. like her). At that point it will be her willpower against mine. It's very hard to boss your own mother like a child, but that's what it will come to. I'm not looking forward to that challenge, but I guess time will solve it - her strength is declining while I'm learning from experience. Good luck.