Mum has dementia - but is in complete denial

[iismum]

My mum (78) has been having severe memory issues for 2-3 years. She gets very confused about what is going on, has very poor short-term memory and really isn't able to do much by herself. She is also hardly eating - living off cup-a-soups and biscuits. She lives with my dad (81), who is doing his best to support her.

The trouble is that she is in complete denial about her situation. She absolutely will not see a doctor, so has no actual diagnosis. We persuaded her, with great difficulty and some trickery, to go and see her GP about 18 months ago. The GP did a memory test on her and wanted to refer her to the memory clinic and my mum totally freaked out, and even now talks about 'that awful doctor' (the doctor is actually really nice). She has quite bad arthritis but also won't see a doctor about that and instead takes something over-the-counter (think it might even be homeopathic) that doesn't seem to be doing anything.

She gets really angry with my dad all the time - angry that he 'hasn't told her things' (when he has many times); angry that he rushed her out of the house so she ended up forgetting things (he always leaves loads of time so as not to stress her); angry that he is being patronising and thinks she's an idiot if he helps her with anything; constantly telling him he so unkind and mean to her (he's one of the most patient people I know), that she wishes she'd never married him, that she knows he wishes he could leave her and live with me or my sister instead (to be honest, this is beginning to come true).

She basically doesn't do any cleaning or washing any more, but will not tolerate my dad doing any because it's always been her job and he should leave it to her, so he has to do bits and pieces when she's not looking, but their flat is a tip. If we suggest a cleaner, she just says maybe they'll want one one day but they're fine at the moment, and gets angry if pushed.

I'm getting pretty worried about my dad, who has been dealing with this relentlessly for a long time. It's hard to give him any respite as she won't accept there's any problem or that she needs any help.

I think at some point we will need to move her into a home because I don't think my dad will manage that much longer - but how on earth to do this under the circumstances? She'd be so angry and refuse to go. We do have medical power of attorney thank god, but we can't use this until she has been deemed unable to make decisions for herself, and I'm not sure how this would happen if she won't see a doctor.

Has anyone experienced similar? Any suggestions about ways to alleviate any of the issues?

She isn't 'in denial' - she has dementia.

Dementia is primarily a problem with your memory - generally people with dementia aren't the people to spot they have it as they don't remember they have a problem.

The other key feature of many forms of dementia is apathy or being unable to initiate activities - so her not doing the cleaning or washing is typical of this. She just can't figure out how to get started doing it - but if your Dad does it then obvs he won't do it 'her way' and she gets cross.

With my FIL we managed to get him to memory clinic by constantly chipping away that he needed to go and we weren't taking no for an answer, a lot of talking to his health professionals about what he was really like and never letting him attend anything by himself.

By 'in denial' I mean that she won't admit that anything is difficult for her, and develops really convoluted explanations for how her not knowing things is someone else's fault (usually my dads). I think this is mostly subconscious but still the central focus of her behaviour these days is avoiding any suggestion that she has forgotten or not understood anything. If she's gently challenged on this and we suggest she may have forgotten and that actually my dad did tell her where we were going (for example) she gets furiously angry, so I'm not sure how we would go about chipping away at the idea of her going to the memory clinic. We been working on her pretty hard to go and see the GP for a check up / about her arthritis as a way in, but with absolutely no success - she just gets angry.

Yep, that is dementia unfortunately.

You don't challenge.

I'd ring GP saying you are in crisis due to her behavioural symptoms.

This is dementia

It's not cosy old folk going a bit doolally...it's ugly and it decimates lives

There is no "denial", there is no "difficult"...your mum's faculties are being obliterated including that for rational thought. The whole family needs help and support.

If you're in England or Wales I think the mental health act means your GP can intervene if necessary even if you make an appointment without your mother attending.

Maybe ring the national dementia helpline for more advice if you're in the UK 0300 222 11 22

Yes, I agree you need to speak or write toher GP. You need to take the pressure off your DDad so something has to be done. With my DDad the GP visited and made it look like a social call and put him through the tests in a way that did not trigger an emotional respose with him.

I was 'lucky' in that my DDad's 'denial' phase only lasted about nine months and after that he was no longer bothered about things like this.

It's hell to see this in a loved one.

Oh OP, my sympathies to you. We are in the early stages with my mum too. She also gets very angry with others and thinks everyone else is at fault. It is fucking hard. We are getting to the stage where we just keep repeating things very firmly and refusing to get drawn into her convoluted stories. I think ultimately this is helpful (although it is hard to start with as you just feel like fucking robot) but she just needs firm boundaries, I think it helps her feel safer to some extent. Get your GP involved, ours has been fantastic (also takes no nonsense)

Have a look here

We are in a similar place (I actually considered if this was a sibling posting for a few moments).

Speak with Alzheimers.org.uk - they have a local outreach group in our area who are great at signposting for support and guidance.

I'd also speak with dad and see how he is and what his thoughts are?

We have found some strategies to help - we don't all speak to her on the same day, we keep information from her, tell her facts consistently, write things down/calendars and use email/text so she can refer back to it.

Thanks a lot for all the suggestions. Unfortunately the GP hasn't been very helpful. At first she spoke to me in a very general way which was a bit helpful, but the next time I rang wanting to update her with the situation, the reception called back and said she says she's unable to speak to me at all unless we have the medical POA lodged with them. The solicitor has this but can't send it to the GP without my mums permission (which she wouldn't give unless maybe we somehow tricked her) or evidence that she is not capable of making her own decisions- and I don't know how I get this without going to the GP.

I guess we should get my dad to talk it through with the GP - she's his GP and presumably she can give him support for his own situation even if she won't talk about my mum. Ironically, there's nothing confidential she can tell us about mum anyway, as she won't go to see her!

Dad is doing a great job but it's difficult to get him to do things - we've suggested a lot of things like support groups but he just says 'we'll see' - hopefully he won't be like this about going to the GP. He also doesn't get nearly enough respite. I live quite far away but get down to them as often as possible. DSis lives very close and does do quite a bit with them but us always urging dad to get out more and let her support mum but he's very reluctant- I think he doesn't want to take over our lives, but we really want to help! But we've also both got smallish children who find her behaviour pretty distressing. It's heartbreaking to think this is largely how they'll remember her.

We're beginning to think about putting her in a home. I feel it's really too early for her and it would be horrible, but it's just so hard for my dad. Agh.

I'll contact the Alzheimer's association and see what they say. I really appreciate all the advice!

Are you sure it's denial as such, and not that (because of memory issues) not only can she not remember anything, but also that she can't remember that she can't remember anything?

If the latter, it's honestly no good trying to get her to accept it. You just have to work around it as best you can. Including what in dementia-carer circles are called 'love lies' if necessary. I.e. if telling the truth is going to achieve precisely nothing and only upset or distress them, esp. when they're not going to remember what you say anyway, find an acceptable alternative.

My mother was told by her GP that she had Alzheimer's, and apparently accepted it (GP to her was roughly = to God) but had (genuinely) completely forgotten by the time she got home maybe 15 mins later and would very crossly deny it if we tried to remind her. So we soon stopped.

An example of what I mean about being unable to remember that they can't remember anything:

The thing that made me realise (with a sinking heart, since we'd been through it before with FiL) that my mother did have dementia, it wasn't just just old-age forgetfulness, was when she phoned her bank about something - she'd always been very clued up with finances - and could not remember, literally the instant she'd put the phone down, what they'd said.

And yet almost as quickly, she'd forgotten that incident completely, whereas formerly it would have worried and fretted her for ages. ,

That's a really good resource AF, I hadn't come across that before. My DM is 81 and is into her third year of Alzheimer's - she isn't aggressive or in denial, but she does confabulate and has become, erm, overtly sexual shall we say! Very interesting reading, although I had picked up some useful techniques from Oliver James' book, Contented Dementia.

Sorry OP, don't mean to hijack. But I do recommend AF's link and the book I mention. Good luck with your DM, it's very hard but just take it a day at a time - this phase will inevitably pass. My DM is resistant to having carers or cleaners, but I just gently mention it every time I see her. One day she'll relent, so I can stop worrying and dusting or cleaning her kitchen/bathroom!

Yesterday I discovered that she had inexplicably decided to defrost her freezer - with all the food still in it. Not sure how long ago she'd switched it off but it was...fragrant!

Sorry I hadn't seen your newest post before I posted mine, I'd hadnit open on the page for ages! I hope you can make some progress.

Re the POA, mum's solicitor gave me a certified copy and I took it into the GP myself - they took their own copy and changed the notes, it wasn't a problem? Worth a try?

I also recommend Oliver James' book, Contented Dementia. Some very helpful techniques.

I was in your position three years ago. Trying to get my father to see the GP was impossible. Eventually I wrote a letter to the GP stating all of the symptoms my father had and the dangerous situations he had been in because of these symptoms. I ended my saying that he was a danger to himself and others (he was). That way I didn't have to say it in front of my dad when we went for the appointment. I made an appointment for him and told him that the GP had asked o see him for a health check... I know that sounds deceitful but honestly it was needed. His appointment was in the July but it took until December for an official diagnosis. In that five months I was almost at breaking point trying to deal with worsening symptoms and no support. Its a shame your mum's GP didn't just do the referral to memory clinic at the time she was seen as clearly it was in her best interest. Regarding medical LPA... Do you mean the form has been prepared but not sent off? If you have it already you just need to show the original to the medical practice.

The hard thing now is that probably every interaction with your mum is negative and your worry is impacting on your day to day life because you are constantly thinking about it and wondering what will happen next.
If you have time it is well worth watching Teepa Snow videos on YouTube. I found the information extremely helpful. She teaches carers on how to deal with situations. She is an expert on dementia.
Look up Admiral Nurses. Depending on your area there may well be a waiting list for an Admiral Nurse but contact them anyway and get your dad on that list. Then try to be there for the visit. My Admiral nurse was a life saver. I waited until my dad got diagnosed but found out that I could have had access earlier as soon as GP referred to memory clinic.
I feel for you. Right now I would, 1)sort out the medical Lasting power of Attorney so that you can speak to the GP and Get the ball rolling with memory clinic. 2)Support your dad. 3)Contact Admiral Nurses. 4) Keep a log of incidents and dates of talking to professionals/appointments etc. 5) Watch Teepa Snow. I hope this helps.

Sad to say but the dementia will worsen. But this also means that the angry phase may well pass and she may become easier to 'manage' -- sorry, I know that sounds horrible.
We found that my Mum became much more amenable afterwards and we were able to get things done for her after an earlier difficult phase.
It's an awful disease and I really feel for you and your Dad.
I hope things improve soon for your family.

I don't know whether it would help, but your Dad is entitled to a social services assessment of his needs as a carer. But it sounds as if she wouldn't accept help for him either.

This won't go on for ever - her mental capacity will decline and you'll be able to sort something.

My mum had/has absolutely no insight at all, and went through a stage of being very angry because everyone was changing things/ the TV was wrong/ her glasses were wrong (she couldn't read anymore but it was the glasses) and so on. Her language was the first thing to go which made things frustrating for her, and even harder to communicate with her.

Realising that life was more like negotiating with a toddler made a big difference. Bigging things up like 'ooh, you can be a lady of leisure today, lets leave the men to do some work for a change'. Or blaming things on everyone else 'the doctor says you have to have a health check - new thing for people your age' 'the nurse says you have to relax and have a cleaner'. They are lies, but if thats the way things make life better for your mum and dad, thats what needs to happen

Re GPS, because of patient confidentiality they are unable to discuss the person with you unless you have H&W P of A, but there's nothing to stop you sending a letter in advance, detailing the issues, esp. if you know the person him/herself will not give anything like a true picture.

It's worth adding that some GPs are much more clued up about the practical realities of dementia than others, and the same goes for social workers and other professionals who are supposed to help.

Re GPS, because of patient confidentiality they are unable to discuss the person with you unless you have H&W P of A, Not strictly true. Irrelevant to this case, but if you have capacity you can let your GP know that they can discuss your medical condition with someone else. I have PoA, but my father still has some capacity, so I can't use the PoA. But his file at the GP has a letter on it signed by him that they can discuss things with me, and I have on-line access to his medical records.

DM was diagnosed with Alzheimer’s a few months ago and is experiencing slight improvements on cognitive ability on aricept (when she remembers to take them)
It’s not being in denial she can’t remember that she is unwell physically or mentally
DM was in hospital in Feb for a few weeks and had liver surgery - she cannot remember this at all - but at least doesn’t worry about it!
Having no insight is very common and she gets very upset about us ‘interfering’ she accused me of stealing her money to DB when I set up access to her online banking - we do have LPOA - all we are doing is making sure her bills get paid and that she has enough money to live on!
At moment am trying to sort out her pension credit
It’s very stressful all round and have no idea how long we can carry on or when she will deteriorate to a point of needing care or to go into a home