Mum wants to go home

[Andrea C]

My 93 year old Mum has Alzheimers and we moved her into a care home last Friday. We told her it was for a 2 week holiday while her usual carer was on holiday. She previously was in her own home with carers calling 4 times a day. Whenever she was alone she would call everyone she could get hold of and tell them she was lonely and needed company, she would also go knocking on neighbours doors telling them she was on her own and hadn't seen anyone all day. She went through a spell of thinking she was somewhere else and was constantly asking to be taken home. We tried to convince her she was already at home, sometimes she would accept this and just say "well it doesn't feel like it" other times she would tell us not to be so stupid and just come and take her home. The doctor prescribed Mematine which seemed to work quite well once she reached the full dose.
The dilemma I have is that she's really unhappy in the care home, even though we have chosen the best in the area and the place is very well run and the staff are lovely. Yesterday when I visited she cried and said she hated it, it was an awful place with an awful atmosphere and when was she going home because she just wished she could die. This has upset me so much that I'm wondering if I should take her back to her home and arrange extra carers to keep her safe but then I wonder if even back at home would she be any happier?
Has anyone else experienced similar and if so I would really appreciate any advice as I'm feeling totally at a loss as to what to do for the best. I just want her to be happy and content.

 

[Sarasa]

Hi @Andrea C , welcome to Dementia Talking Point, you’ll find lots of support here.
I’m afraid your mum has got to the stage where she wouldn’t be happy anywhere. Even if you took her home and arranged twenty four hour care I doubt she’d be any happier.
It’s early days so give your mum time to settle. Maybe don’t visit for a few days and when you do spend all the time saying how lovely everything is. Have you asked the carers how she is when you aren’t there? You may well find she is settling well, despite saying she’s so unhappy.
It’s all very common, my mum was very similar, and did take her a while to settle, so leave her there for a while and see how things go.
I’m sure others will be along soon with their experiences, but in the meantime have a look round, and maybe use the search bar at the top of the page to find other posts on this and similar topics.

 

[Rosettastone57]

This is very common I'm afraid. When my mother in law was in a care home, she would complain that she was ignored and this was a living hell. Well the home had a Facebook page and there she was in one of the uploaded photos, smiling and taking part in the activities. After that, we just ignored the complaints. Your mum wouldn't be happy wherever she was

 

[Andrea C]

Thanks for replying, I'm sure your right, I'll keep my eye on the homes Facebook page, never thought of that so thank you!

 

[JHA]

My mom was recently in hospital, then a discharge to assess bed and wanted to go home from both. When she was in the hospital I was getting phone calls all the time she even attempted to ring her dad (my grandad who died 20+ years ago to bust her out). She willingly moved to the care home as it was a temporary arrangement whilst they assessed her further but for the first week I had yet more calls one literally begging me to fetch her. When I visited for the first time her first words were 'have you come to take me home' and when I said no she just carried on with a different conversation. She eventually got used to being there but the Social Worker in his wisdom decided that she had the capacity to decide to return home with carers and return home she did. She has been there for nearly three weeks, hates the carers going in as she does not really need assistance she just needs checking on and keeping an eye on. I really think home is not the best place for her but I am willing to go along with it for a little while to give her a chance.

 

[Chaplin]

My 93 year old Mum has Alzheimers and we moved her into a care home last Friday. We told her it was for a 2 week holiday while her usual carer was on holiday. She previously was in her own home with carers calling 4 times a day. Whenever she was alone she would call everyone she could get hold of and tell them she was lonely and needed company, she would also go knocking on neighbours doors telling them she was on her own and hadn't seen anyone all day. She went through a spell of thinking she was somewhere else and was constantly asking to be taken home. We tried to convince her she was already at home, sometimes she would accept this and just say "well it doesn't feel like it" other times she would tell us not to be so stupid and just come and take her home. The doctor prescribed Mematine which seemed to work quite well once she reached the full dose.
The dilemma I have is that she's really unhappy in the care home, even though we have chosen the best in the area and the place is very well run and the staff are lovely. Yesterday when I visited she cried and said she hated it, it was an awful place with an awful atmosphere and when was she going home because she just wished she could die. This has upset me so much that I'm wondering if I should take her back to her home and arrange extra carers to keep her safe but then I wonder if even back at home would she be any happier?
Has anyone else experienced similar and if so I would really appreciate any advice as I'm feeling totally at a loss as to what to do for the best. I just want her to be happy and content.

Hello Andrea, welcome, as others have said, sadly this is a familiar thing for those living with dementia to repeat on a frequent basis. My mum asked me to take her ‘home’ even when she was in her own home with my dad!
it really is early days for your mum and if she was lonely at home then I’m sure the extra regular company of the other residents will keep her occupied. Ask the home what their activities are each day and encourage them to involve your mum even when she says she doesn’t want to. My mum moved to a new nursing home after a stroke in April so is now a falls risk. She spends all her waking hours in the communal lounge apart from when we visit. She has a wonderful relationship with the Carers and today the lady from the laundry brought her clean clothes back and my mum said ‘thank you darling for doing my laundry’. Two minutes later she said she didn’t like it there & wanted to go home. Diversion is often the best way of dealing with it when you are with her, remind her she is safe and well cared for and it’s just for a short time. My mum thinks she’s been in her home for almost two weeks, she moved there in May! It’s love lies but moving her into the home as the right thing and she will settle.

 

[Midge155]

Hi @Andrea C, I’m currently going through the same thing with my mam (71) who has been in her nursing home this past 5 weeks. We had been paying 3 separate carers to come in each day from 10am to 9pm and then one of myself or my 2 brothers were staying each night. It didn’t work, her behaviours were difficult to manage for us never mind the carers. If she was left at home for even 5 minutes she would be constantly on the phone looking for me to come in that she couldn’t stay on her own. She’s still in the process of settling into her new surroundings and like that says she doesn’t see anyone anytime, never eats or sleeps etc. I know she has made some friends and after some adjustments to her medications hopefully she will settle. Every day she asks to come home and I’ve been up there twice to visit and it is very stressful and she has gotten very agitated and aggressive with me. I have gotten a lot stronger over the weeks as I know full well that she is in the best place for her and that if she was at home she would still not be happy. A wise person on this forum said to me at the time I asked about my situation that the person is not wanting to go home but wanting to ‘escape the confusion of dementia - which unfortunately will never happen no matter where they are’ - it was a magnificent piece of advice and one that really put things into perspective for me. I wish you and your mam all the very best and sincerely hope both our mothers will settle soon. Take care x

 

[MartinWL]

My mother too wants to go home, but perhaps she realises that she needs the care that a care home provides. In truth it is a miserable existence, especially as her dysarthria ( speech problem) makes it impossible for her to chat to anyone or make friends. But what's the alternative? There isn't one. People go to care homes because of their disabilities and it isn't surprising that they hate being there. They hate being disabled and their frailties, and who can blame them?

 

[Andrea C]

My mom was recently in hospital, then a discharge to assess bed and wanted to go home from both. When she was in the hospital I was getting phone calls all the time she even attempted to ring her dad (my grandad who died 20+ years ago to bust her out). She willingly moved to the care home as it was a temporary arrangement whilst they assessed her further but for the first week I had yet more calls one literally begging me to fetch her. When I visited for the first time her first words were 'have you come to take me home' and when I said no she just carried on with a different conversation. She eventually got used to being there but the Social Worker in his wisdom decided that she had the capacity to decide to return home with carers and return home she did. She has been there for nearly three weeks, hates the carers going in as she does not really need assistance she just needs checking on and keeping an eye on. I really think home is not the best place for her but I am willing to go along with it for a little while to give her a chance.

What a shame the social worker sent her home when she had settled in the home. Hope she goes on Ok

 

[Andrea C]

Hi @Andrea C, I’m currently going through the same thing with my mam (71) who has been in her nursing home this past 5 weeks. We had been paying 3 separate carers to come in each day from 10am to 9pm and then one of myself or my 2 brothers were staying each night. It didn’t work, her behaviours were difficult to manage for us never mind the carers. If she was left at home for even 5 minutes she would be constantly on the phone looking for me to come in that she couldn’t stay on her own. She’s still in the process of settling into her new surroundings and like that says she doesn’t see anyone anytime, never eats or sleeps etc. I know she has made some friends and after some adjustments to her medications hopefully she will settle. Every day she asks to come home and I’ve been up there twice to visit and it is very stressful and she has gotten very agitated and aggressive with me. I have gotten a lot stronger over the weeks as I know full well that she is in the best place for her and that if she was at home she would still not be happy. A wise person on this forum said to me at the time I asked about my situation that the person is not wanting to go home but wanting to ‘escape the confusion of dementia - which unfortunately will never happen no matter where they are’ - it was a magnificent piece of advice and one that really put things into perspective for me. I wish you and your mam all the very best and sincerely hope both our mothers will settle soon. Take care x

This has been so helpful thank you for replying, so pleased I found this forum! Good luck with your Mum too, I didn't realise until now that this behaviour was so common.

 

[Andrea C]

Hello Andrea, welcome, as others have said, sadly this is a familiar thing for those living with dementia to repeat on a frequent basis. My mum asked me to take her ‘home’ even when she was in her own home with my dad!
it really is early days for your mum and if she was lonely at home then I’m sure the extra regular company of the other residents will keep her occupied. Ask the home what their activities are each day and encourage them to involve your mum even when she says she doesn’t want to. My mum moved to a new nursing home after a stroke in April so is now a falls risk. She spends all her waking hours in the communal lounge apart from when we visit. She has a wonderful relationship with the Carers and today the lady from the laundry brought her clean clothes back and my mum said ‘thank you darling for doing my laundry’. Two minutes later she said she didn’t like it there & wanted to go home. Diversion is often the best way of dealing with it when you are with her, remind her she is safe and well cared for and it’s just for a short time. My mum thinks she’s been in her home for almost two weeks, she moved there in May! It’s love lies but moving her into the home as the right thing and she will settle.

Many thanks, this is very helpful advice. Best wishes to you and your Mum.

 

[DesperateofDevon]

My mother while in her own home receiving social care package used to say exactly the same thing .
Just part of dementia & not recognising her own home, which is of no consolation .
The wanting to die has been ongoing for years …. I had to accept that dementia peels away the person. Honestly I find that the whole care process needs reassessment & comfort care needs to be recognised earlier. Quality of life not quantity.
Now at EOL in 24/7 care “home” is a word she has used … it breaks my heart.
Watching Dementia eat away at your PWD is soul destroying … yet carers & familys receive little to no support on the impact on their own mental & physical well-being .
((((hugs))))))

 

[Jaded'n'faded]

Home is where your mum is. Home is where you feel safe. At home you have your own place, you fit in, you are cared for, looked after, protected, loved. At home you can do what you want. Home is where people know you and love you. Home is where the heart is. There's no place like home.

It's no wonder people want to be there.

@DesperateofDevon I really like your term 'comfort care'. When I read that, a light went on in my head and I thought, 'Yes - that's what should have happened with my mum.'

I'm also thinking that if I get it one day, I'd like everything to be geared towards 'comfort care'. That would include what my mum used to call 'happy pills' and also at a certain point, The Final Pill.

 

[DesperateofDevon]

Home is where your mum is. Home is where you feel safe. At home you have your own place, you fit in, you are cared for, looked after, protected, loved. At home you can do what you want. Home is where people know you and love you. Home is where the heart is. There's no place like home.

It's no wonder people want to be there.

@DesperateofDevon I really like your term 'comfort care'. When I read that, a light went on in my head and I thought, 'Yes - that's what should have happened with my mum.'

I'm also thinking that if I get it one day, I'd like everything to be geared towards 'comfort care'. That would include what my mum used to call 'happy pills' and also at a certain point, The Final Pill.

Comfort care is a medical term , sadly a lot of Practioners don’t want to implement it as Quality of life is prioritised over Quantity!

A profit making business isn’t about comfort care … after all hospices are all about comfort care ! Palliative care needs = comfort care

more palliative care teams need to be involved as normal procedure , palliative care is not just available for the last few hours! Social care & CCG don’t want palliative care teams involved as that input means CHC funding assessments with a person centred care plan .

Sorry but this social care & health system is not meeting the needs of soo many through privatisation & profits!

 

[DesperateofDevon]

Home is where your mum is. Home is where you feel safe. At home you have your own place, you fit in, you are cared for, looked after, protected, loved. At home you can do what you want. Home is where people know you and love you. Home is where the heart is. There's no place like home.

It's no wonder people want to be there.

@DesperateofDevon I really like your term 'comfort care'. When I read that, a light went on in my head and I thought, 'Yes - that's what should have happened with my mum.'

I'm also thinking that if I get it one day, I'd like everything to be geared towards 'comfort care'. That would include what my mum used to call 'happy pills' and also at a certain point, The Final Pill.

My Grandparents had dementia & in nursing homes were prescribed morphine & gently slipped away with dignity & not in pain or distress at the end.

Comfort care is part of EOL , why not implement it when consultants document such ?
sorry but it’s unethical … why go against 2 or 3 consultants ?

 

[Jale]

Mum has been in her nursing home for 3 years now - initially when she went in (from hospital) she thought, and still does think she is in hospital. She told us regularly that no-one talked to her, she hadn't had anything to eat or drink which did worry us, when we visited we used to "hide" round the corner where we could see mum in the residents lounge and she would be joining in activities,along with a cup of tea and biscuits and we also saw her file that had everything in that she had done/eaten. We soon learnt to take a lot of what mum said with a proverbial pinch of salt.
I don't think moving your Mum back home would be a good idea, could you phone the home and speak to someone who may be able to put your mind at rest?

 

[Ruth21]

My mom was recently in hospital, then a discharge to assess bed and wanted to go home from both. When she was in the hospital I was getting phone calls all the time she even attempted to ring her dad (my grandad who died 20+ years ago to bust her out). She willingly moved to the care home as it was a temporary arrangement whilst they assessed her further but for the first week I had yet more calls one literally begging me to fetch her. When I visited for the first time her first words were 'have you come to take me home' and when I said no she just carried on with a different conversation. She eventually got used to being there but the Social Worker in his wisdom decided that she had the capacity to decide to return home with carers and return home she did. She has been there for nearly three weeks, hates the carers going in as she does not really need assistance she just needs checking on and keeping an eye on. I really think home is not the best place for her but I am willing to go along with it for a little while to give her a chance.

Hello, I'm just wondering how your mom has got on since you posted. My situation has many similarities to yours.

My 89 year old mum, who is in the mid-stage of Alzheimers, broke her wrist at the end of May, was in hospital for a week and then moved to a care home a 30 minute drive away from me. She has now been there 5 months. Originally she was due to be discharged at the beginning of August, but then the home went into Lockdown due to Covid cases for 8 weeks. My mum hated being in the home initially, but I would say she is more content now most of the time. But, she is always saying she wants to go home. The home is excellent in providing entertainment and activities daily for the residents and I am told my mum has made a group of friends. I am able to visit once a week for 1 hour.
5 weeks ago Social Services contacted me to say my mum was ready to go home - she lives on her own and I was previously looking after her. I was finding it increasingly difficult. I tried to fight the decision but because my mum is quite able physically, this is all they are concerned with. They did agree that she needs carers 4 times a day to check on her however (like your mum). As I say, that was 5 weeks ago. They can't find any carers!
I wait for a phone call every day which is incredibly stressful. I don't think it's the right decision for her to be coming home for many reasons, but Social services tell me she has to go home to see what she can do.

 

[Andrea C]

Hi and thanks for checking back with me.
I'm really sorry that your mum is going to be sent home because it puts the responsibility back on you ultimately and I know first hand how stressful that is.
My mum finally seems to have settled to her new environment, I wouldn't say she's happy although I don't think she would be happy if I took her back home either. She still has her moments when she phones me and begs me to get her out and take her home but I explain that there is a shortage of carers in the country and she will have to wait until we can find her 24 hour care before she can go home. So far this works and she accepts the explaination.
I have accepted now that she is in the best place, she is being well cared for, has company 24/7 if needed and has also made new friends. I feel so sorry for you and your mum that social services won't leave her where she is as she is making friends. I believe companionship is really important for people with this dreadful disease particularly at nearly 90 years of age, rather than living alone at home.
I wish you all the very best and hope that things work out for the best for you and your Mum x

 

[Kate12]

I’m glad I found this thread. My 92 year old dad has been in his care home for 4 days now and is so upset and distressed it’s heartbreaking. The staff have told us that it’s perfectly normal behaviour and he will settle in time. My biggest fear though is that the residential home will say they can’t cope with him and send him home! It’s a specialist home for dementia sufferers but my dad has shown aggressive behaviour when he gets scared. I thought I would feel relief now he’s safe and cared for but I’m more anxious than ever.

 

[MartinWL]

I am sure others will tell you that you need to give a lot longer than a few days in which to settle. Be patient and with luck, in time, things may improve a good deal.