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

There are books about this.

I cared for my parent with alzheimers at home until they died. We entered their reality. So if they spoke about their (long-dead) mum we never said ‘she’s dead’, we’d say things like ‘oh your mum liked tea? Shall we have a cup?’ Etc. I also never, ever showed how much it hurt that they didn’t know me.

Obviously this was before the final non-verbal years.

I follow the same approach with patients. Nothing is gained, absolutely nothing, by forcing the truth on them. It only hurts them.

Absolutely you are approaching this correctly OP. This is the recommended advice, to enter into their reality.

You don't go and fabricate a big story, but just like you did, you just non-committally go along with what they're saying, then see if you can change the subject.

Obviously he doesn't want to frighten or hurt her! He's probably uncomfortable with being dishonest, and worried about adding to her confusion further by agreeing with things that aren't true.

My Mum with advanced dementia in a care home used to say she was “ going home on Tuesday” or say she didn’t know what her DH was watching as she had the telly. My Dad had been dead years.
I just went along with what she said or she’d have been distressed.
My brother used to correct her. Just torture being told every day that you aren’t going home or your husband is dead.

Towards the end she used to say her Mum had her tea ready or was waiting for her. My Grandma had been dead over 30 years but it gave her comfort.

Sounds like you are being kind and considerate.

Your approach is right. Go along with it but don’t encourage it. So, if she says that Albert visited, say that’s nice - as you did - and then move on with the conversation. Don’t start asking questions about what Albert said or did as it may cause just as much confusion as telling her Albert didn’t visit. It can be very hard to deal with which might be why your husband is finding it difficult. If he’s had to come terms with the loss of his uncle Albert then it might well be traumatic for him to have to “pretend” that his uncle still alive.

My dad used to say really odd stuff: that he’d been on a helicopter ride or he’d met the prime minister. We eventually worked out that he would see something on TV and then think that it had happened to him.

A photo book including all the key family members and their names might be helpful for her.

We always went along with it but never indulged. Nobody wants to be told someone has died over and over again but I wouldn’t ask questions either just a quick ‘oh did he’ when she talks about her brother visiting. We also just gave generic answers when asked ‘when’s mum coming back’ we’d reply ‘not sure’ or ‘soon’ rather than have it take up lots of time. It’s an awful disease, wishing you luck with everything.

How horrid. The OP’s dh is suffering too. Of course he’ll come to accept the situation, especially if it goes on for years. But having seen dh getting very upset and trying to stick his head in the sand I can see things from the point of view of a “child” experiencing a parent’s worsening dementia.

It's so sad isn't it.
As most PP have said, your approach is right. It's about trying to keep their distress and confusion to a minimum.
My FIL really struggled with this with his wife - constantly correcting her and getting frustrated with her. It was so uncomfortable to watch. My young teenage son was able to just sit with her and answer what he did for Christmas time and time and time again. We weren't living with it day to day as FIL was and I guess it's easier to dig in to your stores of patience when it's just for a couple of hours.

I am experiencing similar with my Aunt at the moment. I try and organise to do things together rather than sit and talk.

Just agree it won"t get any better, you might find she "visits" her mother or talk about how she was in town earlier , i go with my mum to visit her sibling, in their care home, and the conversations are heartbreaking really,but you just have to go along with it,

.

If you think about the physical strain of hearing really upsetting news, just what it does to your body in that moment, and imagine going through that several times a day, I think it’s much much kinder to not put them through that. I would absolutely go along with them, no point and actually unkind to be correcting then

Bear in mind also that it’s always easier if it’s an in-law or similar. For you/others, it’s a choice to enter their world, validate their reality, etc. For your DH, there’s a much stronger emotional hit to come to terms with - he’s losing his mum in a slow drawn out way. No one automatically knows how to deal with this, so it’s a learning process for him.

Much as I hated Margaret Thatcher, it was reported that she experienced fresh, harsh grief, during her dementia, everytime she was told Dennis had died years before. That's no way to live, and if you can avoid that, which you can't, always, I think that is the most humane thing to do.
It's not as if she is going to retain the information that Albert has, actually died?
By telling her, everytime, you are actively causing her distress. Why would you do that?
I agree with your stance, OP

My parent is constantly flip flopping from one reality to another. So if they talk about seeing a (long departed) relative or pet recently, I just go along with it. However, a few minutes later they say 'oh they aren't with us any more are they'. So then I feel caught out! I was only trying to be kind by going along with things! 😩

the thing is she may never mention Albert ever again. its obviously a treasured memory has crossed her mind so its lovely to let her be there.
my late fil used to go back to work in his mind. we explained to the staff that when he would shout out the same name this was the man who he worked with, that used to help him top up tanks. all a part of his job. for him he was back in the factory and this man was there with him. if you think about it a lot of his life was spent at work so not that odd that he went back there

Yes I agree, the OP is obviously right and her DH wrong but there's no need to put the worst possible spin on it. It's really upsetting and confusing seeing this happen, and it's not that easy to know what to do when you're not an expert. For instance it may seem obvious from the detachment of a computer screen to not tell someone their relative has died, but when they're in this middling stage where they are sometimes confused and sometimes quite with it, there is that temptation to 'bring them back' or correct them. For instance my relative with dementia went through a very sad phase of thinking any young-ish man who visited her was her (long dead) husband and any middle aged man was her father (obviously even longer dead). Especially for the youngsters it was awkward and embarrassing and of course tempting to say I'm not your husband, which would inevitably lead to upset and questions about where he was then and when would he visit. No-one wanted to frighten or upset her but you have to acknowledge how difficult and upsetting that is to have your grandma think you're her husband and start quizzing you on where you've been and where you're up to.

What we did was a variant of joining her in her world, we didn't necessarily either agree or play along with the roles she'd assigned us but nor did we argue, we'd just try and distract rather than making things up (as also alarmingly every so often she'd have a sudden burst of lucidity and work out she was being lied to and get very upset). So if it was '[DH], you've finally come to visit me!' to her grandson, he'd say 'Hi, how are you, shall we go for a walk' or if it was 'Hello Daddy, have you come to take me home?' we'd say 'not yet, we have to wait a while, would you like to look at these photos' - photos or newspapers or other artifacts were particularly helpful seemingly at gently bringing her back to present day without upsetting her...

It's so difficult. My parents had a very good marriage, they worshipped each other. So when my mother started telling anyone who listened that Dad was attacking her with a knife when no one was around, I couldn't help correcting her because it killed my poor Dad every time.

Would it help to ask staff at the care home to have a discreet conversation with your FIL and your DH as they arrive for their visits but before they see MIL?

I'm sure they are well used to having to explain what is happening to visiting relatives. Some people at first do seem to feel the need to try and correct the patient's account of things at first, and may need it explained that doing so achieves nothing other than perhaps pointlessly distressing them (the patient).

Some people (maybe your DH and your FIL) do seem to be under the misapprehension that correcting the person will somehow slow down the progress of the disease. It won't of course, but that can need gentle but firm explanation from the professionals involved.

I'd say "Did he, (I'd loved to have seen him), tell me all about it"

The trouble with this is, sometimes the person doesn't actually have any memories of the visit from the dead relative to tell (of course, because it didn't happen) and this in itself is upsetting and confusing for them when they try and recall - depends on the stage of the disease and the person's personality, they may just move on to telling you about something completely different or they may give you a detailed fantasy account rather than getting upset but personally unless she's clearly keen to tell me details I wouldn't go along with it to that extent, more do a mm hmm that's nice, what did you have for your dinner/watch on TV/shall we look at something else type of thing. I definitely wouldn't call out that the relative is dead and so couldn't have visited though, to be clear...

Just say that’s lovely and move on. Don’t add to the delusion but don’t challenge it.

You’re correct. Repeatedly telling her she’s wrong will only add to her confusion. There are plenty of YouTube videos available that address this very concern - maybe your DH would benefit from looking at a few?

There is a woman on the socials in her 20’s who cares for her grandmother who has dementia. She films their interactions. Her own Mother has died and the grandmother talks about her often. It’s lovely and heartwarming to watch how they interact and talk about her. I will try and find her as I can’t remember what she’s called.

I’m really heartened by this thread and that it’s much more commonly understood that we should “enter into their world” I work with older people, many who have a dementia diagnosis, and see how much families struggle. You have relatives who are frustrated that their mum, dad etc is lying about things when in fact they are just talking about how things are in their world (or confabulating as they can’t remember the details). Recognising the emotion and responding to it is so important, as is making the person feel safe and secure.
Families really worry about going along with a “delusion” but that’s not what it is. To that person, it’s real. And how comforting at 85 to think your mum will be back from the shops soon to make your tea, or your favourite brother will be home soon from his holiday with a stick of rock?
I love that Cadbury advert with the father and daughter. Captures it perfectly.

Dementia practitioners will tell you that it’s always best to go along with it, rather than reminding them (again and again) that someone has died. Like you say, you’re not going out of your way to say ‘Albert is coming to visit’, you’re just acknowledging what she’s said and then changing the subject. The reality is she might have seen someone who really did remind her of Albert and that might have brought up some lovely memories for her. Let her have those moments. ❤️