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Original poster

How to respond when DM doesn't know where she is

12 replies

Gladtimeslady · 09/10/2026 10:43

I've just seen another thread about how to respond to people with dementia when they say things that aren't true, like saying they've seen a long dead relative. I completely agree with the advice PP have given about not contradicting them (so as not to cause unnecessary distress). I try to follow this approach with my own DM.

However, I have a slightly different issue that I don't know how to handle. DM (who is 97) still knows who we all are (although she gets names muddled) but her short term memory is absolutely non-existent. She is still living in her own home, where she has lived for 60 years. She no longer leaves the house.

Several times a day she becomes convinced she has been taken and left somewhere she doesn't recognise and, not surprisingly, she finds this extremely distressing. She will just keep saying that she doesn't know where she is.

I just don't know how to respond. If I try to reassure her that she is in her own much loved home and remind her that she is surrounded by her own furniture, pictures and ornaments, she will say that she can see all of that but that someone is trying to trick her by putting her things in this strange place, or that, although the things are similar to hers, she knows they're not really hers. If I don't try to reassure her that she is in her own home and instead just try to reassure her that she is safe, she gets annoyed as well as upset and says she's not stupid and she knows she's not safe in this strange place.

This can sometimes last for hours until she dozes off. It's very distressing for her (and for us). The rest of the time she seems quite happy and cheerful but then she'll get stuck for long periods in not knowing nowhere she is.

Does anyone have any advice please in how to respond to minimise her distress?

OP posts:
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Whenindoubthugitout · 11/10/2026 08:42

I would have a look at jubilees tv.

it’s a set top box for the telly, where you can
drop in and chat to her
send her messages.
put on her favourite programme etc.

seeing you might help her settle.

i have looked at it, but my husband is at home with me 24-7 so it wouldn’t work for him (alz) but it looks like a good bit of kit

ButSpringDidNotKnow · 11/10/2026 08:37

Gladtimeslady · 10/10/2026 13:37

Many thanks for the replies. I am very grateful to you for taking the time.

When I am there I can usually, but not always, manage to distract Mum, although she will often keep reverting back.

But the real issue is that a lot of this takes place on the telephone. Mum lives on her own with carers coming in. She is adamant she wants to stay in her own house and does not want to go into a care home. My brother lives 15 minutes drive away and goes to see her at least 4 times a week. I live on the other side of the country but I spend a few days with her every month.

So if she gets upset about not knowing where she is, she rings me or my brother or my SIL (who is a saint). Whoever she rings reassures her and calms her down (which can take 15 or 30 minutes) and she then puts the phone down and almost immediately rings another of us to repeat the whole thing.

I spend a lot of time wondering if she would be happier in a home, but I think she would probably get even more distressed if she actually was in a strange place and didn't recognise her furniture, etc. She also gets visits from old friends at present (which she loves) but they are all elderly themselves and no longer driving and probably wouldn't be able to visit if she moved out of the village.

It's just so difficult isn't it? Mum was so intelligent and energetic and funny, and she would absolutely hate what she has become. And sometimes she does seem to realise, which is heartbreaking.

Anyway, thanks for the advice and support. Take care of yourselves.

It sounds like these episodes are worse when your dm is alone. She may not want to go to a care home, but would she be mentally better off in a place where she is not alone?

I’m not criticising or judging you. I’m in a similar position to you. It’s so difficult to navigate.

wherearemypeople · 11/10/2026 08:35

I know it's a really common thing (my mum had similar). A friend who worked with adults with dementia said he spent quite a lot of time taking them out for a drive to go "home" when this happened, and the activity of leaving then returning seemed to settle them that it was their home, at least for a while.

PermanentTemporary · 11/10/2026 07:55

That sounds so difficult. 💐

I agree with the likelihood that it is sundowning. Maybe check in with her GP, book an appointment and send an associated message about it?

Id try to see it positively that she has three such caring relatives to be in touch with who are worrying so much about her. I’m sure your instincts about her needs are the best she could possibly have.

Mischance · 10/10/2026 18:33

It is so hard. My late OH beloved so many crazy things.
I discussed it with the psychiatriat and he said that false beliefs are held much more strongly than true facts and that trying to reason with someone is doomed to failure. He suggested distraction. I can't say it was 100% successful but might be worth a try.

It is so hard to watch someone distressed with fear.

Original poster
Gladtimeslady · 10/10/2026 18:26

Thanks @catofglory. I do think the point is not far off when my mother will be better off in a care home. I'm expecting she will probably need to move some time next year. My brother and I have visited several homes and found a place that we like. It is very reassuring to know that your mother was happy in her care home.

On balance I think my mother is happier in her own home at present, although I may be wrong. Despite these periods when she does not recognise her house, she knows her way around it very well and she can direct family and carers to the precise cupboard or drawer if she wants something. Family including grandchildren and great-grandchildren go to stay and she absolutely loves it when the house is full of all the people she cares about. She also talks about all her happy memories in the house with my father (even though she mostly forgets he died 10 years ago). I realise all this will change as her dementia progresses.

I agonise about this constantly and I just hope I am getting it right and will know when the time has come for her to move. She is still reasonably physically fit (although she chooses to spend most of her time in her arm chair) so she is not unsafe and most of the time she is happy and cheerful and constantly telling everyone what a good life she has. It is just when she gets stuck in a phase of not knowing where she is that is distressing for us all.

OP posts:
catofglory · 10/10/2026 13:53

Honestly, I think she would do better in a care home.

I mentioned my grandmother above, but I also dealt with ten years of dementia with my mother. My mother got to the stage where she did not recognise the home she'd lived in for 50 years. She lived alone and the daily carers had to put post it notes on each of the doors saying 'bedroom, bathroom' etc because she no longer knew which room was which. As soon as the carers left she was very anxious, and rather than ringing (she couldn't remember how) she would leave the flat and wander around trying to accost neighbours.

That is the point where I moved her to a care home. I had no idea how it would work out, but she loved it there. She was no longer distressed because whenever she was anxious there was always someone there to answer and reassure her, 24/7.

I moved my mother to a care home near me which was too far away for her friends to visit, but in all honesty there was a limit to how long they would keep visiting once the dementia progressed anyway. And they were a similar age to her, and all had their own health issues too.

If a care home is an option, do consider it.

Original poster
Gladtimeslady · 10/10/2026 13:37

Many thanks for the replies. I am very grateful to you for taking the time.

When I am there I can usually, but not always, manage to distract Mum, although she will often keep reverting back.

But the real issue is that a lot of this takes place on the telephone. Mum lives on her own with carers coming in. She is adamant she wants to stay in her own house and does not want to go into a care home. My brother lives 15 minutes drive away and goes to see her at least 4 times a week. I live on the other side of the country but I spend a few days with her every month.

So if she gets upset about not knowing where she is, she rings me or my brother or my SIL (who is a saint). Whoever she rings reassures her and calms her down (which can take 15 or 30 minutes) and she then puts the phone down and almost immediately rings another of us to repeat the whole thing.

I spend a lot of time wondering if she would be happier in a home, but I think she would probably get even more distressed if she actually was in a strange place and didn't recognise her furniture, etc. She also gets visits from old friends at present (which she loves) but they are all elderly themselves and no longer driving and probably wouldn't be able to visit if she moved out of the village.

It's just so difficult isn't it? Mum was so intelligent and energetic and funny, and she would absolutely hate what she has become. And sometimes she does seem to realise, which is heartbreaking.

Anyway, thanks for the advice and support. Take care of yourselves.

OP posts:
doitwithlove · 09/10/2026 12:01

This sounds like Sundown, it happens a lot with people who have dementia. Goggle it for more information. Hope this helps.

NoctuaAthene · 09/10/2026 11:43

Gosh it's so hard isn't it. Is she distractable at all when she's having these episodes, food or a cup of tea is a good one, or can you give her a job to do (within her capabilities) - my relative used to be very soothed by folding laundry or shelling peas or things like that and continued to be able to do so long after a lot of other functions were gone. Or is she a physical touch person, would she respond to a gentle hand massage or brushing her hair gently or similar? Or put some music on, have a little sing-song, that would be particularly good if she would go for it as something that encourages deep calm breathing is very good for anyone who's anxious or panicking for whatever reason?

Inextremis · 09/10/2026 11:24

I agree with the distraction suggested above. With my Dad, if he started spiralling like this, I used to ask him what he wanted for dinner, and suggest options - foods he liked (sausages, ham sandwiches!). Most of the time this would work - but Dad was a bit of a character, gentle and pleasant even with the dementia - he could be distracted by the offer of a glass of wine. You have my sympathy and empathy - it can be very difficult.

catofglory · 09/10/2026 11:11

This sometimes happened with my grandmother and my strategy was the same as yours - to say you're at home, and point out her nice things around her. Fortunately that did work.

As that doesn't work for your mum and nothing seems to comfort her, I would try to distract her onto another subject to get her out of the obsessive loop. Talk about something different, put the TV on, go through a magazine with her. Or try music, which often soothes and cheers people with dementia.

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