When to go along with things that aren’t true

[TheLostGardensOfElrond]

Couldn’t think how to word the title but the situation is that my MIL is currently in hospital and about to move to a care home; she was diagnosed with Alzheimer’s several years ago and it is, inevitably, progressing.
When I visited yesterday she told me that her brother, Albert*, had visited. I said oh, did he come here; she said yes, he’s only been once; I said that’s nice.

The thing is, Albert died decades ago. My husband thinks I should have said no, Barbara, Albert died.

So my 2 questions are:

• is it better to go along with something that isn’t true but imo does no harm and was something that brought her joy/comfort, or not; and
• if it’s better to play along is there a short article or podcast or similar recommended that I can direct my husband to as he doesn’t see this point of view at all but might hear it better from someone other than me!

*names changed. Also, although I do think my approach is correct, I am happy to learn from others if I’m also missing something. I wouldn’t deliberately lie - eg I wouldn’t continue on with saying Albert will probably be coming to visit again soon but nodding along seems the most kind and pragmatic approach to me

I used to correct my mother, but mostly stopped when I realised that the same errors kept coming up. It wasn't to do with people being alive who had died, more the timing of dates and events (e.g. she would say that her mother only lived to 70, but in fact she was 90). It doesn't help them to tell them they are wrong, and they don't retain it anyway.

Deep in this with DM (late stage vascular dementia). She now lives in a world populated by ghosts and imaginary people.

When I go into see her I always say my name to her. Sometimes it roots her for a little while but mostly it doesnt. We are now familiar strangers to each other.

I will talk about what her DGCs and DGGCs are up to but she doesnt recognise the names any more. I never asks if she remembers as I know she doesnt.

DB wanted to 'stem the tide' of dementia which only resulted in frustration for him and distress for her. Unfortunately he sees dementia as a weakness resulting from not trying hard enough.

The reason why adult children/partners sometimes find it difficult ‘go along’ with their parents/spouses in the throes of cognitive decline, is that they are desperate for their loved one to maintain a grip on reality, rather than them being deliberately cruel. It’s not the right approach, but understandable. It’s frightening when you start to realise that someone you love inhabits a completely different and seemingly bizarre world to that which you recognise.

Some of DM's flights of fancy can be quite entertaining. A trip to A&E became a trip to France on eurotunnel. Obviously had enjoyed the experience overall. DD had gone with her in the ambulance then DD and I sat with her and chatted through the long hours.

I told DCs not to visit DM once it became clear she was more likely to be distressed than soothed by their visits.

This is the cruelty of dementia. You grieve in reverse as you lose the memories before you lose the person.

The only time I did not go along with my Dad's flights of fancy was when he was really, really angry with my mam for not visiting him, said she was probably off with her 'fancy man'.
My mam had died 5 years ago, and they were totally devoted to each other.
In that case, I decided that telling him gently that mam had died, and talking about him caring for her right until the end was kinder, even though it did upset him.

Otherwise, I just agreed with everything he said😁

I am guessing your DH thinks he can slow down the deterioration by correcting his mum, but I’m not sure that’s the right approach. My mum was absolutely grief stricken when my DF reminded her that her own mother was dead (50 years previously!) he never did it again.

Teepa Snow is an American specialist in dealing with dementia sufferers, and has a brilliant YouTube channel with some fantastic advice, which we found incredibly useful when we were dealing with this.

It so hard and you feel dishonest, but not disagreeing and changing the subject is considered best practice nowadays

Your approach is the right one.

All correcting does is cause pain and distress in someone with alzheimers/dementia.

Everything I've ever read is to agree and redirect.

"Oh did he, how lovely, shall we have a cup of tea mum?"

Of course the OP is right, but I feel some posters have been very unsympathetic to the dh (and it is his dm) or quite pompous: “expert advice is…”

We all know best practice in all manner of situations, but when you’re actually in the thick of it those pesky things called emotions can throw a spanner in the works.

I’ve always gone along with it unless it’s unkind and worrying. So ‘my brother Albert came in today and hit me with a stick’ I would not go along with - I’d try and ascertain if anything concerning had happened.

But the ‘I’m going to the Maldives tomorrow on my private yacht with Brad Pitt’ I just say things like ‘that sounds wonderful. I bet a lot of people would be very envious’

I go along with it too. My dad has dementia and cancer and is convinced that he's going to get better soon. I just nod along and sound encouraging.

I don’t have experience, but I would guess the only time you’d tell them a person has died is if they’re repeatedly asking and getting distressed about someone they expect to be visiting them.

I find “lying” to my mum incredibly difficult but I know the advice is to join them in their world if you can, because they can no longer be with you in the real world. It’s very hard though, I feel for your husband. Maybe he could be non committal and say things like gosh, I haven’t seen him in such a long time, and move the conversation on?

DF was devastated when his brother was killed in a plane crash at 21. In his last months he thought that my grandson was his brother and he was so happy and excited to see him. It gave us all joy and there's no way we would have burst his bubble of happiness.

Yes, you should go along with it. This doesn't need to mean getting involved in elaborate lies- just "how nice" and move on if that feels more comfortable, or respond with something related but not building on the falsity eg "Albert visited yesterday" "How nice, were you two close as children?"

Correcting someone does nothing to slow the progress of the disease (and even if it did, to what end?) I wonder whether there may be a bit of denial on your husband's part as obviously it is hard for him to see his mother like this.

In that situation, I would probably tell them that their loved one was coming later.
If the level of their confusion and distress is as such, then a brief "I think they're coming later" will hopefully reduce their distress. Then move onto something else. I find reading aloud soothing for both parties.

Thank you for all the constructive and compassionate posts; and so sorry to hear of some of the situations described, so cruel and distressing for all involved x

Definitely in this kind of situation. MIL had a nice visit from her brother, to all intents and purposes.
It was different with my mum who used to ask in a puzzled way when Dad would be visiting, and we'd say Sorry Mum, he died last year , remember? And sh would say, Oh yes that's right, and then change the subject. For her that was less upsetting than going along with it, because she half knew something didn't make sense.

When BIL struggled with the idea of lying to FIL one of the the care home staff said to him “How many times a day should he be told that his parents have died? Can you imagine that every day, or multiple times a day? How is that in his best interest?” It really help BiL think about it in terms of an ongoing thing.

Quick update: DH now fully gets it and is on board; I’ve spoken to care home to flag likely approach from FIL and they’ll have a word/be aware.

thanks again for wise words and understanding x

Anyone i have ever spoken to who works in this field have always said to go along with it, its cruel not to

At this point they live in their own world and you have to join them in it. Doing otherwise just distresses them.

so have a nice chat about their imaginary visitor. Ask open questions so they can say anything they fancy about it.

I Spent years meeting my gran-in-law “for the first time”. Same conversation each visit. It was fine.

It is hard when your parent no longer recognises you. My DM thinks I am her sister (died a few years ago) or just some friendly random who comes in and sorts her flowers which she thinks she bought for herself.

I don’t think saying “expert advice is…” is pompous at all. It’s meant to reassure that something that does feel really wrong is actually the best and kindest thing to do. It can also help to take a little of the weight of responsibility and guilt off a loved one. They have to do something that feels wrong but do it because “the experts say” they should.

I worked in a dementia unit for 10.years . I agreed with everything it made them happy . No point making their life more stressful than it is anyway . We had a very religious member of staff who refused to bend the truth she left a trail of misery in her wake and complained that the residents were difficult and nobody liked her