How to deal with Mum insisting on things that aren't true (when she is still mostly with it)?

[DierdreDaphne]

Mum is in her 90s and after a fall and hospitalisation last year her memory has definitely taken a step downwards.

She is still mostly on top of things but a combination of the hospital stay and now needing carers means she seems to have kind of 'let go' a bit , and leaves a lot of decisions to me and dsis (and/or the carers).

This would be OK except she is inconsistent and sometimes gets very convinced that a wrong memory is right.

This hasn't happened often but it's potentially worrying eg in relation to medical issues where she insists perfectly lucidly to the hcps that for example, a particular issue has been going on for ages when it is new and deteriorating, or is certain about the medication dose she's been taking and again, has it completely wrong.

Because she is an intelligent, well-informed person still for th most part these little confabulations are pretty much undetectable unless you know different because you were there.

Unfortunately with the most recent issue (the medication dose) she has started to get a bit stroppy with us when we contradict her. Which is slightly new and quite worrying.

She has no formal diagnosis of dementia and I don't know if that would help, even if she would agree to an assessment. Which I fear she would not.

I am not really asking for advice in terms of formal steps, more just to hear from others if they recognise this sort of thing and I guess , how they dealt with it.

(We.do both have lpas for both, we do her money stuff and so far she has been fine with that, but I think it's way too early for the health one from what I've read?)

My advice is push for a diagnosis if you can, because it makes certain things easier, and pick your battles.

If the untruth has no impact, just let it go. In the case of specific medical ones, a) this is where having a diagnosis would be useful and b) see if you can have a route for correcting things in a way that's not in front of her/a way of contacting them separately so you can give correct information. It can be distressing/angering/agitating for them when they're getting contradicted on something they think is true and it is almost never helpful to argue the toss, as you've found!

And I would say it's not too early for a health LPA - get it while she still has capacity. It's much more of a pain once they aren't deemed to have capacity any more!

I've spent the afternoon with my Dear Elderly Relative who can still talk authoritatively about theology and philosophy. He is very insistent that he doesn't require tablets, hasn't had a fall recently, and is not in pain. He thinks the nursing home staff aren't very good, because they won't let him walk down to the library.

Sorry no suggestions - it took about five years to get a dementia diagnosis.

A diagnosis helps as everyone dealing with her will know in advance, and hopefully avoid the endless loop of her telling them things she has made up, being believed and then predictable crisis.

In the moment however, it isn't worth correcting her. She can't remember she can't remember, you in particular are her little girl while she is an experienced adult so obviously she'd be right and you wrong to her mind.

If she's being seen at home, conversations with HCPs on the doorstep are helpful. As is vigorously shaking your head behind her back if she is getting stuff wrong.

Make sure you are down as being able to share her medical information at the GP, they usually want a letter from her to do this before the LPA kicks in. An accidental success for me is that my DM doesn't use a mobile, but my mobile is down on her record as the preferred number. Means everyone calls me first before calling her so I get to give an update.

I dont want to be mean or horrid , but I would also advise on a LPA in place as soon as possible

I had to have that DNR conversation with mum 10 days before her death and 2 days previous she was asking to be kept alive - untreatable cancer and a heart attack

This stage caring for elders is heartbreaking

Thanks for the replies. Power of attorney for health and welfare exists but she is in no hurry to activate it obviously - I mean, I wouldn't be either!(came up at recent hospital appointment)

Make sure you are down as being able to share her medical information at the GP, they usually want a letter from her to do this before the LPA kicks in.

This sounds like something we should try to organise. I'm wondering how to persuade her this is a good idea. At the moment she is only "missing bits" a few % of the time, otherwise she is either fully with it, or knows she's forgotten IYSWIM. I suppose we could try emphasising the "you know you forget stuff occasionally" but to date we have only really taken on the hospital communications (and only attend those appointments) As a lifelong GP frequent flyer she is still very much "in charge" re the gp (and has phone appointments so we aren't there). I think this will be easiest to swing after the first time she actually gets something wrong in her dealings with the GP. Otherwise she'll just think we're interfering for the sake of it? I feel like the last thing we should do is cause her to mistrust or resent us, things would really go to shit then, whereas at the moment she is pretty much contented and grateful - 98% of the time....

This is long, and goes into later stages of dementia, but I think very useful:

Compassionate Communication with the Memory Impaired by Liz Ayres, A volunteer of the Alzheimer's Association and former caregiver.

DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.

DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Eliminate ‘no’ from your vocabulary; substitute ‘yes’ instead.
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.

My appeal to you: Please elevate your level of generosity and graciousness.

Remember

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. So don’t argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.)

They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about . How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”

Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow you everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

If she regularly has appointments with the GP I would email them with your concerns about her memory. The phrase you need is that “you want to avoid unnecessary hospital admissions”. You also need to make it clear that you’re not asking for any information on your DM.

Ive had to do this a couple of times and both times the GP had called the elderly relative in, done some cognition tests then referred them to the Memory Clinic. The relatives have complied as that generation seen to revere GPs.

You don't activate a Health and Welfare LPA in the way you do for Finance.

It can only be used when she lacks capacity. And even then if she just plain doesn't want to do what you suggest it isn't very helpful.

Diagnosis is helpful as it starts people doing capacity assessments rather than just assuming she is making a bad decision. However even then the quality of assessment is variable.

My mother started doing this aged about 90. I think she mentally blocked out anything she didn’t want to deal with, so would deny any knowledge of being diagnosed with late stage heart failure.

We got her to add us as next of kin at the GP and permit the GP to speak to us directly. We also emailed the GP about her memory lapses and our concerns, and tge GP called her in but she refused a memory assessment.

We also made sure that a ReSPECT (advance decision) form was in place.

My DM would chat so rationally that everyone believed her. In hospital after a fall she talked at length about her 5 children and her career as a legal secretary that she gave up to become a mum. The discharge nurse rang me to discuss support for her when she came home because it seemed unfair that I was doing it all. She was shocked that she had been taken in by mum's confabulations. I was/am an only child with 5 children. Mum had never been a legal secretary, she worked for BT until she got married.

There were lots of little things that she would say that weren't true but that she was 100% convinced she knew or had experienced.

Ugh, thanks everyone. I admit to being a bit depressed at this point, as she had been doing pretty well, considering everything (her health has actually never been great). But I can see things starting to unravel in front of us, and we're already finding it hard going (neither of us lives nearby)....

But greatly appreciate all the tips and advice, particularly with respect of the GP. I know if she was called in for a memory check she would immediately know it was us though, and be cross. She has said several times 'youve been talking about me behind my back haven't you?' and yes, we have, obviously, and have explained why. She accepts the explanation at the time but obviously it unsettles her. She's in an uneasy grey area between not wanting (or being able) to do everything but also understanding and intermittently resenting the fact this means loss of control - even though she is also mostly grateful! It's very hard to navigate - and so tiring trying to do the emotional labour for both sides, or all three when eg apologising to carers when she is short with them etc 😬😬😬

And yes i know full well no-one on this board needs any of that explaining to them! 😅

Just don’t contradict her. I had to find ways to not agree or disagree and steer the conversation. Sometimes it was easier to agree (if there were no wider implications) because it actually didn’t matter that she was wrong as long as she was happy and not being challenged.

Oh yes - this is exactly how my relative was. I was the only person living locally and it was only if you saw her every day that you’d realise she lost grip on reality. Her stories were specious - completely plausible but wrong. She’d been out to lunch with a neighbour (dead for years) Had seen someone in the shops (moved away 10yrs ago) Had taken her pills earlier (still there in the packet) Had been for a walk round the garden (didn’t go out there at all) Had paid that invoice (why is there a final demand letter here then…) it was very frustrating to begin with, particularly as no one else would believe that she was deteriorating. We did do the dementia assessment thing, but I cant say it made much difference. She always knew the date/prime minister/big news story and her memory for things in the distant past always remained good. It was almost like day dreams/thoughts became reality. She never got any worse though, and lived nearly 10 years like it from 90ish -99yrs.

I spent a year or so correcting her, before realising it was easier to go along with it for an easy life. Get POA in place would be my advice, and do all you can to make life simple as possible for yourself!

I’ve noticed with my FIL who is 86 that he can in the last 18 months get quite/very stroppy if contradicted at all , and he also forgets he has already told you things too multiple times - however he is still very much ‘all there’ and has no help at all, cooks for himself, house is clean etc , does decent walk every day. In these situations I’ve learnt just to nod along and sometimes change the subject - I find it a weird kind of half way situation where you know they are not quite ‘as they were’ , he’s become obsessed by scammers/conspiracy stuff ( I reckon itsall that GB news crap) but don’t actually need any interventions. However compared to many on here I realise so far we are lucky

I can absolutely see well have to get used to nodding along with some of her nonsense. Which is nonetheless going to be a challenge for us...

But when she insists she hasn't been taking her bp meds (and her bp is fine without) so doesn't need another prescription...when she has , and therefore does - it's a bit more awkward!

And yes i know 'let them' etc , but when I then need to do another 4 day round trip to take her to hospital again, where they might once again refuse to operate because of said bp... 😭😭

Sometimes you do have to just tell them they have lost their memory and it's sad but that's how it is.

But they won't remember that conversation so you will upset them all over again. My mum had a combination of mixed dementia and delirium. I responded to every conversation as if it was true to her but informed the nurses. Most of the confabulations were down to delirium. She frequently asked where dad was. I usually said he was shopping which was true before he died. She also asked how my best friend was (she'd died). I just said she was just the same. We didn't have the best relationship but ironically enough, she was much nicer to me once she developed dementia

When we’ve contacted the GPs (different practices) one called them in for a “Well Woman Check” and the other called them in for a “Medication Review” so the relatives were not aware that there were concerns about their memory or that anything had been raised. Realistically though, your DM might be cross but is unlikely to remember for very long why she is cross

My mother is like this too. She is 88. It can be very difficult. Solidarity 💐

That’s not my experience at all @ThunderFog. Can you explain a bit more please?

Don’t contradict.

i have memory issues myself and it’s upsetting to be contradicted.

if there aren’t really issues - eh she says she went on holiday last year but actually it was ten years ago - just listen to the story.

if it’s actually impacting care that’s a different issue.

No memory issues with DM, just a bad habit of minimising and denying issues. We communicate directly with her doctor and always get an email in ahead of her appointments so the GP can understand what she's looking at. GP also emails us wrt medication, dosages, etc.

Oh OP I feel for you. My mum had a tough time being taken seriously by HCPs when my dad’s memory was failing badly. He was in hospital and she had a quiet word with a nurse about how worried she was about his lucidity. The nurse replied that he was fine and in good spirits and had been telling her about his career as a headmaster. ……However he was never a headmaster, or a teacher, or even worked in any type of education. How he sounded so convincing, I have no idea. At that point the nursing team started to take my mum’s worries very seriously. I suspect they have a lot of experience in order people talking seemingly completely coherently about stuff that never actually happened. I hope you get the support you need very quickly. I know how hard it is 💐

That's useful to know,thank you. Though in her current 'grey area' she may well get fixated on something for a while and not forget it (her memory is only unreliable, as in, it also often works fine!), - which is tricky to navigate too, in it's own way!