Is it ok to tell Mum the truth

[Kaz70]

Mum has been in her care home 8 months now, she took a couple of weeks to settle but there was a lot of planned activities & they even got taken out at least once a week to the local garden centre or coffee shop etc. Unfortunately this seems to have stopped and activities are happening in the home instead.

When mum was living on her own she was never at home and always out doing something, playing cards, shopping, visiting friends or out for lunch this was about 18 months before going in the care home but after a hospital stay she rapidly went down hill.

I thought she would like it in the care home with all the company & activities and she seemed to at first but just recently she never seems happy and is always looking for a fellow resident, if she’s doing the activity mum will go and has even been known to get up and go with her & leaving us sitting there while visiting her!

We make sure we take her out twice a week at the moment but the last couple of weeks she has been getting anxious about returning to the care home and saying ‘why are you taking me back here you know I don’t like it, why can’t I just go home?’ I normally just answer with ‘it’s where you are at the moment’ and then she normally says ‘but I haven’t got any clothes or anything’

Are we taking her out for too long? It can be between 4 & 6 hours sometimes but we have learnt to get her home by about 4pm before she gets too muddled.

I am wondering whether I should be saying that her memory has got too bad for her to live at home alone. Before we changed the clocks and it was dark at night I would remind her that she didn’t like being at home alone in the dark.

Is it better for me to be honest & tell her the real reason she is there? Or am I being selfish because I find it hard to find an excuse for her being there,

 

[canary]

Would she believe you if you told her the truth? My mum wouldnt have - she would have just got very cross because there was nothing wrong with her you know

4-6 hours does seem an awfully long time. Try cutting it down to just a couple of hours and see if that helps. I used to take mum out, but the length of time got progressively shorter and shorter. It got to the stage where i could only take her out for a cup of tea and cake, or the sea front and eat an ice cream, then back again. Eventually I could not take her out at at all

 

[Louise7]

It may be that the change in environment when going out is unsettling your Mum and making her anxious. It's common for those with dementia to talk about going 'home' but it isn't usually a place as such but somewhere where they feel safe and secure. Have you asked the care home staff how she is when you're not there - is she still anxious? Anxiety/depression is also quite common in those with dementia so if the staff say that this is a regular thing maybe a medication review is needed. I personally wouldn't tell her that she is in the care home because her memory is too bad for her to live at home as it might upset/confuse her. As above, try reducing the length of her trips out to see if that helps. My Mum's home has a lovely garden so I take her out there if the weather's good and give her an ice cream or cake and to Mum it's a trip out.

 

[Sirena]

I doubt she would be able to process or accept it if you told her she is at the CH because she has memory problems, and it wouldn't necessarily relieve her anxieties. I agree with the other posters that she may no longer be able to cope with a lengthy outdoor trip. Their world does inevitably shrink and it sounds as if she is now quite absorbed in the life of the CH.

When she asks to go home, what she really means is that she wants her life to be like it was before dementia, and she thinks 'going home' will achieve that. As we all know, sadly it won't.

 

[Kaz70]

Would she believe you if you told her the truth? My mum wouldnt have - she would have just got very cross because there was nothing wrong with her you know

4-6 hours does seem an awfully long time. Try cutting it down to just a couple of hours and see if that helps. I used to take mum out, but the length of time got progressively shorter and shorter. It got to the stage where i could only take her out for a cup of tea and cake, or the sea front and eat an ice cream, then back again. Eventually I could not take her out at at all

Thank you @canary for your reply, I agree with you that she won’t believe me & she will get cross, she gets cross when I say ‘it’s just where you are at the moment’. I know telling her the truth isn’t the right thing but just needed someone to agree with me.

My brother likes to take mum out because he doesn’t like the thought of her being stuck in there and quite often takes her to the coast etc he used to bring her back in the evening but he has had to adjust that to getting her back just before tea as she was settling better like that. I guess it might be time to shorten the time again.

 

[Kaz70]

It may be that the change in environment when going out is unsettling your Mum and making her anxious. It's common for those with dementia to talk about going 'home' but it isn't usually a place as such but somewhere where they feel safe and secure. Have you asked the care home staff how she is when you're not there - is she still anxious? Anxiety/depression is also quite common in those with dementia so if the staff say that this is a regular thing maybe a medication review is needed. I personally wouldn't tell her that she is in the care home because her memory is too bad for her to live at home as it might upset/confuse her. As above, try reducing the length of her trips out to see if that helps. My Mum's home has a lovely garden so I take her out there if the weather's good and give her an ice cream or cake and to Mum it's a trip out.

Thanks @Louise7 I am supposed to be having a care review soon so I think I will email them and explain my concerns. I was wondering whether she may be depressed or whether this is just the next stage she is entering.

 

[Kaz70]

I doubt she would be able to process or accept it if you told her she is at the CH because she has memory problems, and it wouldn't necessarily relieve her anxieties. I agree with the other posters that she may no longer be able to cope with a lengthy outdoor trip. Their world does inevitably shrink and it sounds as if she is now quite absorbed in the life of the CH.

When she asks to go home, what she really means is that she wants her life to be like it was before dementia, and she thinks 'going home' will achieve that. As we all know, sadly it won't.

Thanks @Sirena for your reply, I think us taking her out is reminding her of home and what she used to do, I take her to her best friends every week for lunch and leave her there for a couple of hours and her friend talks about what she’s done all week like being out playing cards, or going shopping & out for lunch all the things she would have been doing with them when she lived at home. My brother takes her out for lunch & sometimes to the seaside etc which is what she did every Sunday with her friends with her being the driver! I hadn’t thought of it the way she must be seeing it.

 

[16Rocky]

My dad is also saying he wants to go home, and doesn’t believe there’s any reason why he can’t. He’s started phoning me to try and get me to make the arrangements. I have no idea how to deal with this, but it does help to know that other people are experiencing the same thing.

 

[canary]

My dad is also saying he wants to go home, and doesn’t believe there’s any reason why he can’t. He’s started phoning me to try and get me to make the arrangements. I have no idea how to deal with this, but it does help to know that other people are experiencing the same thing.

Hello @16Rocky and welcome to Talking Point.
Asking to "go home" is classic dementia. Often they ask to "go home" even when they are sat in their own home, because (as Sirena says) what they are actually asking is for their life to be like it was before dementia and dont understand that it cant happen.

I assume that your dad is living in a care home? If he keeps phoning you might want to restrict his access to a phone. I am not a great fan of mobiles in a care home, because it is too great a reminder of life before dementia and often prevents them from settling in their care home. If he has a mobile perhaps it might get "broken" (maybe by having the SIM card removed!) and need to be "repaired", or the charger might go missing, or any number of other things might happen to it and oh dear, you keep "forgetting" to sort it out

If he is using a staff phone perhaps you could have a word with the staff and they could say that they have tried to phone you, but you are out - or something similar.

 

[Kaz70]

My dad is also saying he wants to go home, and doesn’t believe there’s any reason why he can’t. He’s started phoning me to try and get me to make the arrangements. I have no idea how to deal with this, but it does help to know that other people are experiencing the same thing.

Hi @16Rocky, mum used to phone me quite a lot at the beginning getting the staff to ring by saying she just wanted a chat! That wasn’t what she wanted she wanted picking up & taking home, I had a word with the care home suggesting they needed to actually work out what it is she wants, she hasn’t phoned me since! I would have a word with the care home even if they pretend to ring and say there’s no one there at the moment & we will try again later.

 

[imthedaughter]

My dad would be quite alarmed if I told him why he was in the home, not sure he would believe me, he says there's nothing wrong with him (although his leg can be troublesome so maybe he should stay a bit longer). He thinks he's taking advantage of a loophole in the NHS (he pays for the home privately). The mobile thing, at first I wanted dad to use his mobile so we could speak with him and he could call us, but I've relaxed on that now as the staff keep excellent records and if he's around when I call they will hand the phone to him. Unfortunately he doesn't exactly recall when I last called, whether it was yesterday or last week, so I call when I can and he always seems to be happy to speak to me. My brother took him out for lunch the other week and he struggled being out of his usual routine after a couple of hours and said he felt unwell and wanted to go back. I prefer to visit him for coffee, then I'm not disturbing his routine too much and he can play piano, go out for the paper and so on. I should point out we don't live nearby so can't see him every week - the one brother who does live nearby doesn't visit at all but we visit during school holidays. Dad's still independent for a resident but like others have found I think his world is shrinking and he's happy at the home,at least for now, so I'm happy too. I think lots of trips out may be unsettling your mum so a bit of trial and error, shorter trips etc may be a good idea.

 

[Kaz70]

My dad would be quite alarmed if I told him why he was in the home, not sure he would believe me, he says there's nothing wrong with him (although his leg can be troublesome so maybe he should stay a bit longer). He thinks he's taking advantage of a loophole in the NHS (he pays for the home privately). The mobile thing, at first I wanted dad to use his mobile so we could speak with him and he could call us, but I've relaxed on that now as the staff keep excellent records and if he's around when I call they will hand the phone to him. Unfortunately he doesn't exactly recall when I last called, whether it was yesterday or last week, so I call when I can and he always seems to be happy to speak to me. My brother took him out for lunch the other week and he struggled being out of his usual routine after a couple of hours and said he felt unwell and wanted to go back. I prefer to visit him for coffee, then I'm not disturbing his routine too much and he can play piano, go out for the paper and so on. I should point out we don't live nearby so can't see him every week - the one brother who does live nearby doesn't visit at all but we visit during school holidays. Dad's still independent for a resident but like others have found I think his world is shrinking and he's happy at the home,at least for now, so I'm happy too. I think lots of trips out may be unsettling your mum so a bit of trial and error, shorter trips etc may be a good idea.

Hi @imthedaughter
I’m not convinced mum knows she is in a care home, most times she thinks she’s at her club and asks me how I found where she was. The minibus brought her this morning! If I say she’s staying for her tea and staying the night she always says that she hasn’t got her things. It’s ok when her friend says they are all staying tonight but not so good when she says she’s going home!

When mum first went in I used to pick her friend up and take her to see her in the home so I wonder if I should suggest that to her friend again. Although she would get upset when I came to collect her friend to go home.
It’s hard to know what to do for the best. But at least I know she is safe where she is and being well looked after.

 

[Canadian Joanne]

I see no point in telling your mother the truth. I think it would only upset her and then she would forget. Love lies are a very good thing, in my opinion.

I found with my mother that gradually our trips out of the home became shorter and not so far away. Once she was confined to a wheelchair, we were reduced to staying around the home. It is a sad thing how this disease constricts a person's life.

 

[Sirena]

My mother used to ask how I knew where she was too! I'm not sure where she thought she was... and now she doesn't know who I am, so that doesn't happen any more.

Thanks @Sirena for your reply, I think us taking her out is reminding her of home and what she used to do, I take her to her best friends every week for lunch and leave her there for a couple of hours and her friend talks about what she’s done all week like being out playing cards, or going shopping & out for lunch all the things she would have been doing with them when she lived at home. My brother takes her out for lunch & sometimes to the seaside etc which is what she did every Sunday with her friends with her being the driver! I hadn’t thought of it the way she must be seeing it.

It sounds like all these things are sparking memories of her old life, which of course friends and relatives want to encourage, to show she's still part of their lives and nothing much has changed. But things have changed, and she needs to settle in to her new life, so reminding her of the old one may well not be a kindness.

 

[imthedaughter]

Hi @imthedaughter
I’m not convinced mum knows she is in a care home, most times she thinks she’s at her club and asks me how I found where she was. The minibus brought her this morning! If I say she’s staying for her tea and staying the night she always says that she hasn’t got her things. It’s ok when her friend says they are all staying tonight but not so good when she says she’s going home!

When mum first went in I used to pick her friend up and take her to see her in the home so I wonder if I should suggest that to her friend again. Although she would get upset when I came to collect her friend to go home.
It’s hard to know what to do for the best. But at least I know she is safe where she is and being well looked after.

That's a good point, I'm not sure if Dad really accepts it's a care home, he says he's an 'inmate' jokingly and he says 'I have a room here' but he's not explicit about it being a care home. I saw early on in my reading of this forum that to ease the distress of leaving some people would leave their bag somewhere else and coat in the car and 'just pop to the loo' or 'to the car' rather than saying goodbye. Fortunately/unfortunately the PWD would then forget they were coming back or there at all and it eliminated the 'goodbye stress'. I don't know if that would work for her friend? You could wait outside if you turning up is a trigger.

Presumably she liked her club so isn't it wonderful for her to be there having a marvellous time, all the time? My dad thinks he's 100% independent but everything he eats is prepared for him, his room kept clean and tidy, his bathroom cleaned... must be the food and cleaning fairy! In fact the CH staff said it's easier for some men to settle in care homes as they have been used to having things done for them - many of the women had greater caring responsibilities and find it strange to not be doing things like cleaning or washing or cooking anymore. Sounds like a terrible cliche I know, but in their experience, true.

It is extremely hard to know what to do for the best. I'm sitting here typing this having almost forgotten we don't have an official diagnosis - yet..!