Any advice for those in denial of their condition?

[Cookie B]

Hi, I'm Cookie.
It's lovely to be here and quite a relief to find somewhere with other people going through the same thing! My mum was diagnosed with mild Alzheimers in 2018. It was largely just memory loss at the start but now we are noticing massive mood swings, impatience and rudeness with others, hiding things, not wanting to eat etc. But the most difficult thing to deal with is the total denial.
My Mum is 80 and lives with my Dad who is also 80. I am only 10 minutes away so can be there easily and usually have them over for dinner once a week ( I have a family of 4 with 2 teenagers, one with mental health issues) and talk to them regularly. My Dad is really struggling as my Mum is often quite horrible to him. My mum sorts out her own tablets which is obviously not a good idea but we are at a loss to know how to change this. We've said it would be easier if she took them at the same time as my dad so they can help each other but she gets very offended and says she doesn't have a problem remembering them. I'm pretty sure she doesn't take them properly though.
Dad has prostate cancer and heart troubles and would love to let someone in to help do the cooking and cleaning but my mum is fiercely independent and although she does very little housework now, she thinks she does. Therefore it's also very difficult to suggest getting someone in to help. We've tried saying it's for Dad's benefit but she just says "well I look after Dad"! I feel like we are getting nowhere and things are getting worse. Does anyone have any advice for those in denial of their condition?
Thank you.

 

[LynneMcV]

Hi @Cookie B and welcome to the forum.

I am sorry to hear of the predicament you find yourself in, it is very hard when multiple responsibilities pull us in so many directions to the point where we are not sure what to do for the best.

I don't have personal experience of dealing with a loved one who is in denial of their diagnosis but there are many members here who have faced that situation and who may have some helpful advice to share.

Keep posting, you will find lots of support here.

 

[silkiest]

Hi @Cookie B , both my mum and MIL accepted the diagnosis initially but as the Alzheimer’s deteriorated they both started to deny it. I think as it progresses and their memory has more actual gaps their mind puts is other memories and of course they are fine according to their memories.

It gets to a stage with dementia where you have to do what the PWD needs rather than wants.
My mum set out her own tablets in boxes she bought from the chemist. When I had suspicions she couldn’t cope I checked this regularly and it was obvious she was not taking her tablets consistently . I had a couple of long discussions with her GP who saw mum and insisted she needed a chemist filled box. This was our first stage of proving what was happening to start getting carers in but it took a very long time with a lot of falling out.
If you don’t have power of attorney for health and finance yet this is absolutely essential to sort as the GP’s won’t talk to you about someone else without it. They can be done mainly online through gov.co.uk website if you search power of attorney.
I would get them sorted for both parents at the same time and then mum may be more accepting

 

[Duggies-girl]

Hi @Cookie B My dad never excepted his diagnosis, as far as he was concerned the doctors were talking rubbish and there was nothing wrong with him. It is a very common thing and trying to convince your mum is pointless and will only cause upset and arguments because she just is unable to accept it.

Sometimes you have to get a bit crafty at this stage and use love lies. Could you just get someone in to help your dad and tell her it is a new government initiative to help people back to work or something similar and that it is free and only for a week or two. She might accept that and you just carry on from there.

 

[Lotus59]

Hi @Cookieb, I'm also new to this forum. My mother read the letter with her diagnosis of Alzheimer's and mixed dementia several times. The problem is that one of the parts of her brain that is affected, is the part which processes new information. This is becoming more obvious in other areas of her daily life, like reading letters and having conversations imparting information, which she pretends to understand, but doesn't. Her denial of her condition is really upsetting for me, so I understand your frustration, as I feel I have been burdened with total responsibility for her life, and ultimately her end of life care and death. She has historically fought me at every stage, but if it's any consolation, she is fighting less and less and getting more and more content. She still complains that she doesn't see anyone at all (not true she sees people every single day) and that she spends a lot of time alone so her forgetfulness is merely boredom and loneliness. I have had to fight to get care in place, PAs who see her every day and also meals on wheels, and I see her often and ring her most days. So. I suppose I've had to comfort myself (and talk to myself) when she complains or moans, that what she's saying is not true and then I change the subject. I've been advised that distraction and a subject change are the best strategies at the moment. The denial is heartbreaking though, and I know that I will never ever again have a conversation or authentic relationship that I had hoped for before she gets worse. I know that might not be a huge help, but at least I can identify with the denial. My friend's father had no insight either and always claimed it was boredom and old age.

 

[Jaded'n'faded]

I think you basically have to trick her! It's time to get inventive and creative - you know your mum best so you probably know what would work for her and what wouldn't. Others in this situation have 'sold' the carer as a 'friend' of yours who needs a little job so she'd be doing you a favour... Or tell her it's a new, free goverment scheme to help older people. You could say the person is in training and ask your mum to keep an eye on her to make sure she's doing a good job. Even, you've got them a cleaner because 'everyone has them these days...'

I guess the important thing is to present it in a way that doesn't make your mum think you are undermining her or criticising the 'work' she does (or thinks she does.)

 

[Lotus59]

Yes, I sold in carers initially as “friends of mine”. That worked and now she knows they are carers and pays for them no problem.

 

[Cookie B]

Thank you everyone, these are all really helpful replies - I especially like the idea of saying it is a government initiative to have people help out in the home - I think that could possibly work!
It's also helpful to hear that some people never accept their diagnosis, it's made me realise that I was kind of waiting for my mum to say ok I realise I'm ill so please help me but that isn't going to happen. I just need to get on with helping her. The next stage is to get my Dad on board as he feels it's easier to just leave it for the moment.
I might also ask the Doctor to insist on getting a chemist filled box as suggested as this might work instead of me saying it!
You have all really helped, thank you so much.

 

[MrCanuck]

One thing to keep in mind is that is this likely not denial. Its a condition called anosognosia, where the brain is damaged and the person simply does not have awareness that they are ill. The PWD can be told all the facts but their brain tells them there is nothing wrong, so to them there is nothing wrong and they become frustrated with always being told there is.

Imaging if it was a sunny day and every person you met said it was raining and trying to convince you it was raining. Eventually you too would become frustrated and angry.

I fully understand the frustration you are feeling (been there, done that), but it might help you if you understand that its an actual condition (anosognosia) and not a denial of the situation. Your mother isn't denying her problems, her brain is telling her there aren't any. She really doesn't have any control over that I'm afraid.

 

[Muttimuggle]

My Mum was diagnosed with mixed dementia last October but it was only the Alzheimer's part of it which caught my attention in terms of safety issues.The other part of her dementia(which only I have been recognising for years) is probably vascular. In my Mum's case she was living alone. She had blister packs and when I started to check on her packs I realised she was had taken 2 doses in one week(and many of them are quite dangerous in even small overdose). She was then "borderline partially sighted" so she would use the excuse of not being able to see properly. She would also say to me, when I asked about the missing dose of tablets, "Well I haven't taken them!" And I would ask - "Well where have they gone then?"But she would re-iterate that she definitely hadn't taken them. When she took a second double dose later in the week I was alarmed. I actually phoned 111 and because she was on Edoxoban(dangerous blood thinner) and a big cocktail of others. I was told by a nurse who phoned me back that she should attend A&E. I didn't take her because it was her 90th birthday the next day and I wasn't even sure if the overdose had happened that day or the day before.
All change - I started putting her blister pack tablets with large labelled days on them and my brother put a lamp above the boxes. I still witnessed her mis-medicating and even forgetting how to switch on the lamp...or it was maybe her deciding she didn't need the lamp - she knew what she was doing(!)
Anyway, meanwhile, I had notified her GP about my concerns and I am not sure but probably that 111 call gets recorded on the system(?). He did another memory test thing on her(so these things need updating with every next concern you have) and she scored worse than the previous one of years before. As a result of that he, unbeknownst to me arranged a consultant visit - and I think the concern over tablet taking was a big thing affecting that.
When the consultant came to her house she was firm with my Mum and with me about the need for assistance with tablet taking.I had been wanting to get in some care for a while but my brother, who only sees her now and again and is away out of the country often, kept telling me to leave her alone. And my mother didn't want anyone coming in so I was at a loss, but with the consultant saying this I could use this to prove to my mother that it was something she had to do. She paid more attention to a doctor, of course, than her "little daughter" ("How would she know?!")
...At which point I got in care initially for tablet dosing, half an hour a day but that soon became help with her evening meal too and then in a few months I changed it to twice a day and that felt more secure, for a while.

 

[Cookie B]

One thing to keep in mind is that is this likely not denial. Its a condition called anosognosia, where the brain is damaged and the person simply does not have awareness that they are ill. The PWD can be told all the facts but their brain tells them there is nothing wrong, so to them there is nothing wrong and they become frustrated with always being told there is.

Imaging if it was a sunny day and every person you met said it was raining and trying to convince you it was raining. Eventually you too would become frustrated and angry.

I fully understand the frustration you are feeling (been there, done that), but it might help you if you understand that its an actual condition (anosognosia) and not a denial of the situation. Your mother isn't denying her problems, her brain is telling her there aren't any. She really doesn't have any control over that I'm afraid.

Thank you, that's really interesting. That sounds very possible that she has that.

 

[Cookie B]

My Mum was diagnosed with mixed dementia last October but it was only the Alzheimer's part of it which caught my attention in terms of safety issues.The other part of her dementia(which only I have been recognising for years) is probably vascular. In my Mum's case she was living alone. She had blister packs and when I started to check on her packs I realised she was had taken 2 doses in one week(and many of them are quite dangerous in even small overdose). She was then "borderline partially sighted" so she would use the excuse of not being able to see properly. She would also say to me, when I asked about the missing dose of tablets, "Well I haven't taken them!" And I would ask - "Well where have they gone then?"But she would re-iterate that she definitely hadn't taken them. When she took a second double dose later in the week I was alarmed. I actually phoned 111 and because she was on Edoxoban(dangerous blood thinner) and a big cocktail of others. I was told by a nurse who phoned me back that she should attend A&E. I didn't take her because it was her 90th birthday the next day and I wasn't even sure if the overdose had happened that day or the day before.
All change - I started putting her blister pack tablets with large labelled days on them and my brother put a lamp above the boxes. I still witnessed her mis-medicating and even forgetting how to switch on the lamp...or it was maybe her deciding she didn't need the lamp - she knew what she was doing(!)
Anyway, meanwhile, I had notified her GP about my concerns and I am not sure but probably that 111 call gets recorded on the system(?). He did another memory test thing on her(so these things need updating with every next concern you have) and she scored worse than the previous one of years before. As a result of that he, unbeknownst to me arranged a consultant visit - and I think the concern over tablet taking was a big thing affecting that.
When the consultant came to her house she was firm with my Mum and with me about the need for assistance with tablet taking.I had been wanting to get in some care for a while but my brother, who only sees her now and again and is away out of the country often, kept telling me to leave her alone. And my mother didn't want anyone coming in so I was at a loss, but with the consultant saying this I could use this to prove to my mother that it was something she had to do. She paid more attention to a doctor, of course, than her "little daughter" ("How would she know?!")
...At which point I got in care initially for tablet dosing, half an hour a day but that soon became help with her evening meal too and then in a few months I changed it to twice a day and that felt more secure, for a while.

that's really helpful thank you. I do keep telling my dad she needs to go back in for another memory test and the doctor said they would arrange it but they haven't. Maybe I need to mention that I don't think she's taking her pills properly and then they might take more notice. I would love that someone would go in just to check on them daily as like you said, they don't think their daughters know what they are doing! Thanks for the advice.

 

[Muttimuggle]

that's really helpful thank you. I do keep telling my dad she needs to go back in for another memory test and the doctor said they would arrange it but they haven't. Maybe I need to mention that I don't think she's taking her pills properly and then they might take more notice. I would love that someone would go in just to check on them daily as like you said, they don't think their daughters know what they are doing! Thanks for the advice.

It might be best if you alert the doctor by phone yourself, about the problems going on and the need for another memory test. Then get your Dad to take her in to attend "a blood pressure test" or her"annual check up" - any white lie which gets her in there. Even your father doesn't need to know the reason(It would be no good if he ended up telling her she was going in for a memory test- That would get her annoyed, maybe). Then the GP can just slip in the memory test or and maybe tactfully(hopefully) discuss some of the concerns you raise about tablet taking or any other safety issue. If you don't do something like that you are potentially waiting for a not too dangerous, but nevertheless unsafe, thing to occur to use as evidence. I also always tried to say things to Mum like, " It is hard taking tablets every day. Even I make mistakes. Most older people get help with this sort of thing." That sort of thing worked sufficiently for my mother anyway - it may or may not work with yours.

 

[try again]

You have to intervene and get carers in to give her medication. If you don't you will end up taking her to a+e every few days in fear of overdosing. Been there, done that. Being stuck in there until 4 in the morning a few times will soon strengthen your resolve
Mum begrudgingly allowed the social worker to arrange for carers for three weeks and no more. That was nearly a year ago
You may also find you may need to lock the meds away so that she can not dose herself in between.

 

[Cookie B]

Hi @Cookieb, I'm also new to this forum. My mother read the letter with her diagnosis of Alzheimer's and mixed dementia several times. The problem is that one of the parts of her brain that is affected, is the part which processes new information. This is becoming more obvious in other areas of her daily life, like reading letters and having conversations imparting information, which she pretends to understand, but doesn't. Her denial of her condition is really upsetting for me, so I understand your frustration, as I feel I have been burdened with total responsibility for her life, and ultimately her end of life care and death. She has historically fought me at every stage, but if it's any consolation, she is fighting less and less and getting more and more content. She still complains that she doesn't see anyone at all (not true she sees people every single day) and that she spends a lot of time alone so her forgetfulness is merely boredom and loneliness. I have had to fight to get care in place, PAs who see her every day and also meals on wheels, and I see her often and ring her most days. So. I suppose I've had to comfort myself (and talk to myself) when she complains or moans, that what she's saying is not true and then I change the subject. I've been advised that distraction and a subject change are the best strategies at the moment. The denial is heartbreaking though, and I know that I will never ever again have a conversation or authentic relationship that I had hoped for before she gets worse. I know that might not be a huge help, but at least I can identify with the denial. My friend's father had no insight either and always claimed it was boredom and old age.

It is all really upsetting, especially knowing it's going to get worse and not being able to do anything about it. I have a lot of guilt that I'm also so busy with my job and family and can't devote masses of time to my parents although I see them at least once a week. Thank you for posting, it is definitely a help to hear other people who can identify with me.

 

[Samho]

Advice for medication issues- my mum cannot remember her meds- I bought a ‘Pivotell’ automated pill box online- pharmacist recommended it
It’s brilliant
I fill the 30 rotating cassette slots with her daily pills once a month
You set a timer and it flashes and an alarm sounds eg 8.30 am
The only way it will stop is if you pick up the box- which then automatically dispenses the tablets for that day
It gets locked after you load it so the PWD can’t get into it any other way

 

[Pork Pie lady]

I agree that for most they are unable to recognise there is anything wrong with them but I do feel quite strongly there must be some who deny it because they are afraid of the consequences ie not being allowed any control over their lives or being "locked away" in a home.

 

[canary]

I agree that for most they are unable to recognise there is anything wrong with them but I do feel quite strongly there must be some who deny it because they are afraid of the consequences ie not being allowed any control over their lives or being "locked away" in a home.

Both mum and OH were/are unable to recognise the extent of their problems (and mum didnt think she had anything wrong at all), but Im sure that there must be some who are in denial. I wondered why you felt so strongly about it, though

 

[Pork Pie lady]

Some years ago I had investigations for dementia type symptoms. I started to become afraid of not having any say about what happened to me and maybe forced to leave my home or being looked after by people who I didn't get on with or didn't treat me right. Turns out it was all to do with stress. I still get some some symptoms but now I understand what they are about I am much better they are less severe and don't last very long.

 

[SERENA50]

I agree that for most they are unable to recognise there is anything wrong with them but I do feel quite strongly there must be some who deny it because they are afraid of the consequences ie not being allowed any control over their lives or being "locked away" in a home.

Hi

I thought this might be useful to others

Anosognosia is caused by physical damage to the brain, and is thus anatomical in origin; denial is psychological in origin.

I suppose we could all a mixture of both. The lack of insight and thinking everything is fine. Makes it easier to see things from another perspective. My Dad I feel has a mixture of both sometimes.

S 💕