Asking to be taken home is not at all unusual at this stage, Mary - have you asked how she is when you're not there? Often it is the visit from a family member that triggers it. having said that, there is a lady at my mother's CH who has been there over a year and still walks around with her coat on, asking if anyone can take her home. (I always say, sorry, I haven't got the car today.) But the staff are well used to dealing with this sort of thing, and should be in any CH taking dementia residents. I do hope your worries will be needless.
Mum not settling in a care home
- Thread starter Traceynew
- Start date
Asking to be taken home is not at all unusual at this stage, Mary - have you asked how she is when you're not there? Often it is the visit from a family member that triggers it. having said that, there is a lady at my mother's CH who has been there over a year and still walks around with her coat on, asking if anyone can take her home. (I always say, sorry, I haven't got the car today.) But the staff are well used to dealing with this sort of thing, and should be in any CH taking dementia residents. I do hope your worries will be needless.
Mum still not settled after 6 months
Brief history: I have lived in New Zealand for 22 years. Mum was diagnosed with dementia in 2012. Dad died in April 2013. I’m an only child.
Mum was moved to a local rest home last August 2014 after a fall again and a month in hospital – the doctors said she couldn’t go back home as she was at risk of falls at home.
Having her live at home alone after dad died (with carers going in 4 times a day) was a worry - trying to get cash to her as she didn’t go out was hard –(she has limited mobility), her smoking indoors, standing at the door with money asking people who she 'recognised' to get her cigarettes etc (cos she’s misplaced them), all sorts of things.
I flew over in September to clear out the house of our life’s belongings – mum has lived there since she was 3. She is not settling in the rest home although they’re really very nice there. Every time I phone practically she says she wants to go back home. (Yet, when she was at home a couple of times she said she wanted to go home too and other rimes was lonely).
I don’t like lying to her and reminded her the other day that’s there’s tenants in there (I’ve rented it out to pay for the rest home fees) and she went off her head at me – she’d forgotten. I don’t want to phone as I find it really hard to hear how unhappy she is. Yet she spends a lot of time in the lounge with the other residents. I had a phone put on in her room and whenever I phone she’s hardly ever there. I don’t think she will ever settle though. She’s only ever lived with my dad, and her mum and dad (who lived downstairs). I felt guilty having to get ‘rid of’ most of the furniture/ornaments etc. and shipped a lot of items back to my home in NZ. But I felt terrible clearing out the house and she’s still alive. I feel you should only have to do that once they’ve passed away. I am struggling to cope with mum’s dementia – it both upsets and angers me. I know she is struggling too. She has days of clarity and I think she’s getting better (no, I know I she won’t), and then others times she’s really confused. My family are not talking to me cos I wouldn’t move home and look after her. I really don’t think they know what it entails. I know I am less worried since she’s been moved to the home – she’s safe and looked after properly. But I am sad that she constantly wants to go home and constantly says this. The home has had to apply for a deprivation of liberty which will probably have to go before the court as mum is being ‘kept there against her will’. It seems a never ending nightmare at the moment. :-(
Brief history: I have lived in New Zealand for 22 years. Mum was diagnosed with dementia in 2012. Dad died in April 2013. I’m an only child.
Mum was moved to a local rest home last August 2014 after a fall again and a month in hospital – the doctors said she couldn’t go back home as she was at risk of falls at home.
Having her live at home alone after dad died (with carers going in 4 times a day) was a worry - trying to get cash to her as she didn’t go out was hard –(she has limited mobility), her smoking indoors, standing at the door with money asking people who she 'recognised' to get her cigarettes etc (cos she’s misplaced them), all sorts of things.
I flew over in September to clear out the house of our life’s belongings – mum has lived there since she was 3. She is not settling in the rest home although they’re really very nice there. Every time I phone practically she says she wants to go back home. (Yet, when she was at home a couple of times she said she wanted to go home too and other rimes was lonely).
I don’t like lying to her and reminded her the other day that’s there’s tenants in there (I’ve rented it out to pay for the rest home fees) and she went off her head at me – she’d forgotten. I don’t want to phone as I find it really hard to hear how unhappy she is. Yet she spends a lot of time in the lounge with the other residents. I had a phone put on in her room and whenever I phone she’s hardly ever there. I don’t think she will ever settle though. She’s only ever lived with my dad, and her mum and dad (who lived downstairs). I felt guilty having to get ‘rid of’ most of the furniture/ornaments etc. and shipped a lot of items back to my home in NZ. But I felt terrible clearing out the house and she’s still alive. I feel you should only have to do that once they’ve passed away. I am struggling to cope with mum’s dementia – it both upsets and angers me. I know she is struggling too. She has days of clarity and I think she’s getting better (no, I know I she won’t), and then others times she’s really confused. My family are not talking to me cos I wouldn’t move home and look after her. I really don’t think they know what it entails. I know I am less worried since she’s been moved to the home – she’s safe and looked after properly. But I am sad that she constantly wants to go home and constantly says this. The home has had to apply for a deprivation of liberty which will probably have to go before the court as mum is being ‘kept there against her will’. It seems a never ending nightmare at the moment. :-(
Hi Jean
Mum went into a CH about the same time that your mum did and its not easy is it? I can certainly relate to your feelings that it is horrible to have to sort out their possessions while they are still alive
Asking to "go home" is very, very common in dementia and quite often they dont mean their old home at all - they mean a place and/or time when they felt safe and not confused. If you ask her to tell you about home you may even find its not a real place at all. The fact that she used to want to go home even when she was in her own home rather points to that.
Have you asked the carer workers in her CH what she is like when you are not there? So often they are fine and settled normally, but seeing someone they recognise from their past will often trigger the desire to go home.
Hang on in there and keep reminding yourself that she is safe, clean, fed and cared for where she is. As for your family - I dont see them doing anything for your mum, so why should you take the flack?
Mum went into a CH about the same time that your mum did and its not easy is it? I can certainly relate to your feelings that it is horrible to have to sort out their possessions while they are still alive
Asking to "go home" is very, very common in dementia and quite often they dont mean their old home at all - they mean a place and/or time when they felt safe and not confused. If you ask her to tell you about home you may even find its not a real place at all. The fact that she used to want to go home even when she was in her own home rather points to that.
Have you asked the carer workers in her CH what she is like when you are not there? So often they are fine and settled normally, but seeing someone they recognise from their past will often trigger the desire to go home.
Hang on in there and keep reminding yourself that she is safe, clean, fed and cared for where she is. As for your family - I dont see them doing anything for your mum, so why should you take the flack?
This is my first time on the forum, my mum is Middle to late stages of dementia and due to my Dad of 95 being taken ill in September ( he has been my mums carer since 2011 when she was first diagnosed with dementia, she is now 85) she had to go into respite care, while she was in respite care we where advised that it was not safe for Mum to go home for her or for my Dad, deep down I knew this but it was easier having the decision made for us. She was in respite until 21st November and detiriated a lot, she was not eating and drinking and the only option was for her to be admitted to hospital as the care homes we had chosen had no beds which is why she was in respite for so long all this time they were changing her medication as she was very agitated and aggressive. After two weeks in hospital she got a bed in my first choice care home which was three weeks ago, she is very unsettled,agitated and aggressive, every time I go in she wants me to take her home and says she hates it there, she says it is all my fault, it is so hard I just want her to be happy but don't know what to do, the last four months have been so upsetting, I miss my mum so much, she didn't even know it was Christmas.
Hi Tracey,
My mother who is 91 was diagnosed 3 years ago, as it developed, she had 3 carers going to her home daily ensuring she was fed and gave her the tablets she was forgetting to take. From Sept 2014, she was getting worse and so with the help of social services and her doctor, we found a care home and she was told she was going to stay for a repite period of 8 weeks. It did not go down very well and I ended up being blamed with her saying things like " i cannot believe that my son would do this to me" etc etc .... the care home told me that this usual and to take no notice. That was early november and since then she has got worse, had a fall and ended up in hospital (which she cannot remember).
There are days when she accepts this is her new home, other days she thinks I have come to take her home. No visit is the same and is always very frustrating due the constant repeat questions.
I have found that by treating her a bit like a child does help. So, she cannot return to her own home and I am in the middle of clearing it out. Strange, we dont expect to do that until death ?
However, the care home are allowing me to take a lot of her furniture to them, some being her dressing table and wardrobes so she will have items she is used to and make her room feel like home from home.
It is indeed a very stressing time and a wicked disease to which we are going to hear a lot more of in the future.
You are not to blame, you have done the right thing for your mum, there is little else you can do anyway
Hi Jean
Mum went into a CH about the same time that your mum did and its not easy is it? I can certainly relate to your feelings that it is horrible to have to sort out their possessions while they are still alive
Asking to "go home" is very, very common in dementia and quite often they dont mean their old home at all - they mean a place and/or time when they felt safe and not confused. If you ask her to tell you about home you may even find its not a real place at all. The fact that she used to want to go home even when she was in her own home rather points to that.
Have you asked the carer workers in her CH what she is like when you are not there? So often they are fine and settled normally, but seeing someone they recognise from their past will often trigger the desire to go home.
Hang on in there and keep reminding yourself that she is safe, clean, fed and cared for where she is. As for your family - I dont see them doing anything for your mum, so why should you take the flack?
Hi Canary, no it isn't easy at all. Sometimes I talk to her and she seems as clear as anything, but the stories I heard over the year that she was in her home without dad made me realise that a lot of the time she doing things that wasn't safe, wasn't washing etc.
I phoned her today, after 2 weeks of not calling her as last time she had a hissy fit at me when I reminded her that her house was let out and she couldn't go back home. I just don't want to call her. I am getting more and more depressed myself over her. Anyway, I called her today, only to have her to talk quite clearly to me about the house being rented and that she felt 'out of the loop' and that she had wanted to get some things from there :-( She does know where home is at the moment - she can tell you where everything is in that house (although most of the stuff she had moved from it's place and couldn't find anymore).
When I flew over to clear out the house to make it ready for renting, I had just over 3 weeks to clear out a fully jam packed 3 bedroom home, on my own. I was advised by people not to take her home there to 'help' me sort through stuff as what happened if she wouldn't leave? Plus, at that point she had only been in the home for a month and of course wasn't settled.
I can't change what's happened but I'm beginning to wish I'd left her there to fend for herself, but she was making a neighbour's life a bit of a nightmare and phoning people to do things for her etc.
Her cousins who are her closest relatives - one lives an hour drive away, the other is just around the corner, but they all feel ' she has a daughter' to look after her and don't want the hassle of her.
If I had my own kids, or a high profile career, they wouldn't be so judgmental I don't think, but because I only have a partner, a job and a mortgage in NZ, I am expected to give it all up to come home to look after her. As though my life doesn't matter.
I think she starts getting verbal when she's talking to me or someone she knows and plays the victim. She sounds very convincing and in control at times and I'm sure that's why people think there's not much wrong with her. She seems to be able to 'hold' it together for certain people. I know in the home though that would see what she's like and like I said people have told me things about her when she was home. The doctors fear was she would fall down the stairs - my fear was her setting herself/the house on fire and also someone breaking in and doing something to her. As it was I was told of an intruder that had gone in asking for money - luckily nothing happened to her then, and the police were eventually called after he'd gone.
I have decided I am not going to phone her every week. She is still controlling my life even now I'm in my 50s! I feel sad that I can't phone her and have a nice talk to her - I miss her, but I am miserable every time I come off the phone. It's making me more and more depressed. I've also decided that when I do phone to keep it really short and as soon as she starts going on about going home, I'll make an excuse and exit.
I am really struggling with it all and don't know what to do but no matter what I do, no-one is going to be happy with me.
Jean, I thought since I am on here I should send you a note. You poor darling, I feel your pain. Firstly, you have to forget about the relatives and what they have to say. You have enough on your plate without worrying about what they think.
It really doesn't sound like mom will ever be happy... Maybe you should be telling her white lies..."mom...we can go back to the house when the doctor says you are better. "
I don't think you should be reminding her the the house is not available...it doesn't seem to be working.
You deserve a life of your own.
Take care of yourself and keep posting on TP...it really does help.
Carole
It really doesn't sound like mom will ever be happy... Maybe you should be telling her white lies..."mom...we can go back to the house when the doctor says you are better. "
I don't think you should be reminding her the the house is not available...it doesn't seem to be working.
You deserve a life of your own.
Take care of yourself and keep posting on TP...it really does help.
Carole
When mum went into the nursing home she was much better than now. I dread every visit wondering what mood she will be in, from absolutely furious and attempting to hit me to crying in hey bed. I just don't know. She had deteriorated to the point that she is being moved to the full dementia ward where the staff hope she is more settled. We are selling her house which every so often she says they might kick her out so she will need somewhere to stay. I just mumble and move onto to something else. Some of the worse abuse has been over the phone so I can relate. I am also am only child but mum's nursing home is about 10 mins from my place. However I have been slowly reducing my visits to see if that helps
Oh Jean, its so difficult when they can hold it together for a while and the other person doesnt see the problem. I bullied my invisible brother to go and visit mum at the stage when she often didnt know who I was and I was worried that she would not recognise him.
He went to visit her and told me that she knew exactly who he was, where he lived, there didnt seem to be anything wrong with her and he couldnt understand why she was in a CH!!!!!
I had spoken to her earlier and she said that 2 men had come to see her (it was actually him and his wife), but she didnt know who they were or why they had come
I agree, dont talk to her about renting the house - mum doesnt know that I will be selling her bungalow and I wont tell her when its gone.
He went to visit her and told me that she knew exactly who he was, where he lived, there didnt seem to be anything wrong with her and he couldnt understand why she was in a CH!!!!!
I had spoken to her earlier and she said that 2 men had come to see her (it was actually him and his wife), but she didnt know who they were or why they had come
I agree, dont talk to her about renting the house - mum doesnt know that I will be selling her bungalow and I wont tell her when its gone.
Hi just to say stay strong.
my mom and dad were both ill my dad had c.o.p.d and a broken hip mom suffers from dementia,dad went to help mom as she was looking up to the sky and had a vacant look about her,he fell on mom both were took to hospital, dad past away and mom remained under a section two of the mental health act in hospital.
mom was seeing things searching and unable to find her words but was vocal,for all the world she thinks she is able to talk with you, then we moved her into a care home five weeks ago,it breaks my heart every time i go as i seem to find fault all the time or a problem,that's as i believe nothing is good enough for my mom.
the staff say my head and my heart are in battle should i leave her or bring her home,she said she is on her own and talked to like a naughty girl all the time.
my heart breaks you need to take each day as it comes and follow your heart.
my mom and dad were both ill my dad had c.o.p.d and a broken hip mom suffers from dementia,dad went to help mom as she was looking up to the sky and had a vacant look about her,he fell on mom both were took to hospital, dad past away and mom remained under a section two of the mental health act in hospital.
mom was seeing things searching and unable to find her words but was vocal,for all the world she thinks she is able to talk with you, then we moved her into a care home five weeks ago,it breaks my heart every time i go as i seem to find fault all the time or a problem,that's as i believe nothing is good enough for my mom.
the staff say my head and my heart are in battle should i leave her or bring her home,she said she is on her own and talked to like a naughty girl all the time.
my heart breaks you need to take each day as it comes and follow your heart.
Will it help to have this letter or not?
The answer to that is - it depends whether she believes the letter
Mum at one stage thought we were making up letters - she called them forgeries and didnt believe they were from the people who sent them. It was all a huge conspiracy to her
Fortunately she is now past that stage and no longer questions things.
The answer to that is - it depends whether she believes the letter
Mum at one stage thought we were making up letters - she called them forgeries and didnt believe they were from the people who sent them. It was all a huge conspiracy to her
Fortunately she is now past that stage and no longer questions things.
It's now coming up to 6 months for me since mum was moved to the CH. I used to phone her every week, but now am phoning every 2 weeks as I find it really hard to 'fence' her questions and complaints. We start off talking nicely, about the weather, what's been on TV, etc and she says how nice the girls (staff) are there, but then she starts - she remembers about the house being rented out to 2 boys (which I was honest about and had told her about - I said they were looking after the place for her), but she keeps questioning me about it and then she's asking about her bank book - she wants someone to go to the house to get it for her (I have it with me overseas as the CH won't have it there but I didn't tell her that - I put money into mum's account with them when she needs it's topping up). She wants money and I said to her to ask the CH for some as they told me ages ago they usually give around £5 so people can have something in their purse, but not much more, in case it gets lost/goes missing etc. Then she starts - 'I'm being held a prisoner here' - that's when I clam up and last night (it was 12am for me here in NZ when I phoned her) I quickly said I was tired and that I was going to bed - I cut her off when she tried to go on, and just said that I loved her and goodnight. It's funny how she she gets fixated and remembers things like the 'boys in the house' but also asked me if I'd spoken to Ronnie (her brother who's been dead since 1990). I don't know if she meant him or had got his name mixed up. I just said no I hadn't - I didn't want to go into the 'he's dead' thing in case she hadn't remembered that.
Thing is her constant complaints about her being in the rest home is draining me. If she were to be at home, it would be a nightmare trying to co-ordinate money etc for her from NZ (it was hard enough before she went into the CH as she doesn't get out and about due to mobility problems). I can't make her understand that being in the CH is best for her well-being and safety - she is adamant she'll be alright at home. I am worried what will happen with her continuous complaints. They won't just let her out will they? I doubt if she'll ever settle there but I have to keep reminding myself that when she was at home, at times she would complain she hadn't seen people, that she was a prisoner in those 4 walls too. There's no pleasing her at all. And in the meantime I'm feeling pretty down about it all and I have good days and bad days - some days I feel so lethargic I don't want to do anything, but I get up and go to work etc.
I went away for 5 days last week and I didn't go on my emails etc the whole time I was away - I didn't want any **** from the UK upsetting me (got probs with a cousin executor over dad's Will and the house has a dampness problem etc that's getting fixed etc) - I had a fabulous time - I actually felt like a human being who could enjoy herself, like I used to before all this, but as soon as I got back home, the dread started again of having to phone her and hear her complaining again.
I don't want to phone her, but I feel bad when I don't - I just want to be able to have a nice talk to her, like we used to before she got dementia.
Thing is her constant complaints about her being in the rest home is draining me. If she were to be at home, it would be a nightmare trying to co-ordinate money etc for her from NZ (it was hard enough before she went into the CH as she doesn't get out and about due to mobility problems). I can't make her understand that being in the CH is best for her well-being and safety - she is adamant she'll be alright at home. I am worried what will happen with her continuous complaints. They won't just let her out will they? I doubt if she'll ever settle there
but I have to keep reminding myself that when she was at home, at times she would complain she hadn't seen people, that she was a prisoner in those 4 walls too. There's no pleasing her at all. And in the meantime I'm feeling pretty down about it all and I have good days and bad days - some days I feel so lethargic I don't want to do anything, but I get up and go to work etc. I went away for 5 days last week and I didn't go on my emails etc the whole time I was away - I didn't want any **** from the UK upsetting me (got probs with a cousin executor over dad's Will and the house has a dampness problem etc that's getting fixed etc) - I had a fabulous time - I actually felt like a human being who could enjoy herself, like I used to before all this, but as soon as I got back home, the dread started again of having to phone her and hear her complaining again.
I don't want to phone her, but I feel bad when I don't - I just want to be able to have a nice talk to her, like we used to before she got dementia.
I know, Jean - we would all like that magic wand to get them back
You are right, she wouldnt be happy in her old home - she too would like that magic wand to stop her being confused and unable to do things - but at least she is safe, has meals, company and people to look after her. Sometimes its as good as it gets.
Have you spoken to any of the carers about your mum? Quite often they are fine and its only talking to the relatives that triggers all the complaints off, they dont go on about it at other times. The other ting is, I dont know how long you talk to your mum for, but quite often they can hold it together for a short time and then confusion and fear takes over.
Before mum went into a CH mum had a friend who used to pop in most days and check she was OK and get shopping for her. When talking to mum she would flip constantly beween "Oh Im so grateful for XX I dont know what Id do without her" (the old mum talking) and "That XX is stealing from me and I dont want her in my home ever again" (the new fearful and confused mum talking). I noticed that when talking to her she would start off well, remembering things correctly and understanding things properly, but after about 15 mins she would become confused, fearful and suspicious and there was no reasoning with her. If thats what happens to you might I suggest that you keep the phone calls short before she tires.
You are right, she wouldnt be happy in her old home - she too would like that magic wand to stop her being confused and unable to do things - but at least she is safe, has meals, company and people to look after her. Sometimes its as good as it gets.
Have you spoken to any of the carers about your mum? Quite often they are fine and its only talking to the relatives that triggers all the complaints off, they dont go on about it at other times. The other ting is, I dont know how long you talk to your mum for, but quite often they can hold it together for a short time and then confusion and fear takes over.
Before mum went into a CH mum had a friend who used to pop in most days and check she was OK and get shopping for her. When talking to mum she would flip constantly beween "Oh Im so grateful for XX I dont know what Id do without her" (the old mum talking) and "That XX is stealing from me and I dont want her in my home ever again" (the new fearful and confused mum talking). I noticed that when talking to her she would start off well, remembering things correctly and understanding things properly, but after about 15 mins she would become confused, fearful and suspicious and there was no reasoning with her. If thats what happens to you might I suggest that you keep the phone calls short before she tires.
I am new to this forum but have already found solace in much of what I have read. Your post really resonates with me. My dad died 10 years ago and I have tried to be as supportive as possible of my mum every since. I have been working full time, have 4 children and a husband and live over 3 hours away from my mum. My brother lives over 4 hours away and has his own pressures, so it's been hard for us both and we both feel huge guilt feeling that Dad would want us to do our best by her. Unfortunately she has slowly given up on life, constantly putting hurdles in the way of engaging with a normal life. This has been slowly getting worse and worse until both her mental and physical health suffered. Even some of her long term friends have had enough and no longer contact her. Then she had a stroke followed by a significant development in her pre existing (?) early stages of dementia. She then fell and fractured her leg just after Christmas and has been in hospital and a couple of care homes since that point. Her dementia has increased massively! In one care home, she would ring the bell then offer them containers of her faeces or urine - tissue boxes, water jug, pillow case...! Who was this woman? She is constantly threatening suicide and tells me it will all be my fault if she does. My brother gets the same grief! She wants to go him and is totally convinced she can cope. She conveniently forgets that she couldn't cope before she broke her leg and would phone me 7 times a day to ask where I was, what time it was and when. Would my dad get home (deceased 10 years ago). She is slightly more settled in this home. I don't think they've been offered any unpleasant packages, but each time I call, she becomes agitated, then abusive, then threatening so I have to hang up. It's so sad that I seem to have lost all the good bits of my mum and have been left with a really exaggerated version of her worst aspects (she's always had a tendency to say nasty things, hence the loss of several friends). After reading your post, I can really empathise with the stress and strain that you are under. Ultimately though, the mother that she was wouldn't really want your health and well being to suffer, so you must try to take regular breaks and limit your contact with her for both your sakes. Stay strong - this is a long haul! Dementia is the 'gift that keeps giving'!!
I know, Jean - we would all like that magic wand to get them back
You are right, she wouldnt be happy in her old home - she too would like that magic wand to stop her being confused and unable to do things - but at least she is safe, has meals, company and people to look after her. Sometimes its as good as it gets.
Have you spoken to any of the carers about your mum? Quite often they are fine and its only talking to the relatives that triggers all the complaints off, they dont go on about it at other times. The other ting is, I dont know how long you talk to your mum for, but quite often they can hold it together for a short time and then confusion and fear takes over.
Before mum went into a CH mum had a friend who used to pop in most days and check she was OK and get shopping for her. When talking to mum she would flip constantly beween "Oh Im so grateful for XX I dont know what Id do without her" (the old mum talking) and "That XX is stealing from me and I dont want her in my home ever again" (the new fearful and confused mum talking). I noticed that when talking to her she would start off well, remembering things correctly and understanding things properly, but after about 15 mins she would become confused, fearful and suspicious and there was no reasoning with her. If thats what happens to you might I suggest that you keep the phone calls short before she tires.
Thanks Canary - reading your post, I think you're right to keep the phone calls short as yes, she does seem pretty good at the beginning for about 5-10 minutes and then it declines into the moaning/negativity/confusion.
There is a young man - a befriender from Age Concern, who started visiting her when dad died and I came back to NZ. He is lovely and she enjoys his visits every fortnight. He is still visiting her in the home and although he is not there 'for me', we are in touch and he lets me know how she is getting on. I asked him recently about how mum is in the CH and he said that she gets bored and the other residents annoy her sometimes, but most of the time seems content, especially when he takes her out for her ciggie (she seems to 'live' for those things!).
I did ask the manager of the CH ages ago about maybe giving mum some 'chores' to do, as she said to me if she was back home she could do the washing/folding etc, but when the manager asked mum about this, she said she was fine and didn't want to have anything to do!!! Just can't win eh.
I am a bit reluctant to contact the CH and ask how she is settling in case the 'depravation of liberty' comes up again - I haven't heard any more about whether it's going to court etc and to be honest am hiding my head in the sand with this one as I just don't know what'll I do if the court rules she can go home :-(
Hi Jules, thanks so much for sharing and you're so right about Dementia being the gift that keeps giving! You just never know what you're going to get next eh.
Mum has always been kind hearted to me and dad but has also always had a bit of controlling streak and we clashed in my teen years (as some mother and daughters do). When she goes off at me it brings back those feelings of back then - like I'm being told off and nothing I do is right.
It sounds like you and your brother have done so much for your mum, but with dementia it's never enough for them is it, whereas without dementia your mum would be so grateful for all that you've done I'm sure. There was another post on here about people living some distance away from their loved one with dementia and the toll it takes on them trying to organise things etc. It makes no difference if you're the other side of the world like me, or 2-3 hours away like you, you still can't just keep dropping everything to go to them. It does take it's toll doesn't it. And we have our own families/careers/lives to try to get on with but we still feel the guilt that we can't drop everything to be there all the time.
It's also sad that they lose friends along the way too, but they just can't deal with it, and because they're not family they don't have to.
I'd like to ask my family what make them stand in judgement of me because I have trouble dealing with mum's illness. Why are the children expected to be superhuman and cope with it, when others can walk away without any finger pointing. The expectations on the immediate family members is huge and not everyone can cope with it. We're also living with grief of losing a much loved parent/person who is still alive - who we watch decline and become someone we don't know and don't always like.
My mum was never one to do much - no hobbies etc, her life was dad and me, so there's a huge void for her now since dad has gone. I tried to get her interested in doing things but she can't be bothered it seems. However I think when the CH has an event, that she does go along - especially if it's musical - her and dad used to love listening to music, so she enjoys those events which is great.
I think if I was there I'd like to be a rescuer for mum and make things interesting for her, give her better quality of life - get her doing things etc, but in reality that's not what she wants and no matter what I try/say/do, she always seem to be Jekyll and Hyde and I never know which one I'm going to get
From experience of my husband being in a Nursing Home where it took several months before he became what passed for "settled" I would say - always expect the unexpected - no two visits will be the same depending a lot on the day's state of mind. Also I am sure that our emotional responses to various situations has a bearing on how you cope on a particular visit. Dementia is a dreadful disease - robbing us and the loved one - but try to find humour, affection and love from what you do for your loved one and if you have to "grit your teeth" - and then cry or scream in the car park on occasions - so be it.
I'm so sorry you are having this problem. My mother went into a care home last August after 2 weeks in hospital and is still asking to go home, although 'home' is often where her mother is and she died over 30 years ago. My poor father who is also 85 can't bear to visit most of the time and it falls on me and, as many others have written, the knotted stomach and fear of what I will encounter is all too familiar. Things did seem to be improving slightly but over the last couple of weeks she has gone back to square one. Apparently, her aggression and agitation has returned following a medication change, although this was necessary due to side effects with the previous drug programme. I think the main problem we all seem to suffer from is enormous guilt and the feeling that we are never doing enough. Take care of yourself and at least you know you are not alone is experiencing this awful situation.
