• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

feeling guilty

canary

Registered User
Feb 25, 2014
11,662
South coast
If you wait for your mum to contact you, you will wait forever as she simply will not remember that that is what she is supposed to do. My mum doesnt even remember that she has seen me the day before. I know that you think she must remember because she comments about your hair each time she sees you, but that is an emotional memory triggered by seeing you. She will not be thinking about it inbetween your visits.

Are you still upset about her will? If your mum is in a care home, then she has had dementia for quite a while, probably many years (though many of them can "hide" the symptoms until they are really quite advanced) and the changing of her will sounds typical of dementia - remember my story about my mum taking against a very good, long-standing friend of hers and saying that she didnt want anything to do with her?
It happens - its the dementia controlling her.
 

poster

Registered User
Dec 28, 2011
190
If you wait for your mum to contact you, you will wait forever as she simply will not remember that that is what she is supposed to do. My mum doesnt even remember that she has seen me the day before. I know that you think she must remember because she comments about your hair each time she sees you, but that is an emotional memory triggered by seeing you. She will not be thinking about it inbetween your visits.

Are you still upset about her will? If your mum is in a care home, then she has had dementia for quite a while, probably many years (though many of them can "hide" the symptoms until they are really quite advanced) and the changing of her will sounds typical of dementia - remember my story about my mum taking against a very good, long-standing friend of hers and saying that she didnt want anything to do with her?
It happens - its the dementia controlling her.
Firstly no I am not upset about the will. She no longer has a will. Secondly, my mum was not put into a home because of dementia. She went into a home because of physical problems and she could not run her own home anymore and needed round the clock care. She was diagnosed with dementia three years after going into a home. My dad used to run the home and acted as my mums carer but when he died there was nobody to do that so the only answer was for her to go into a home. 20 years ago I remember she sat my dad down and said to him that sooner or later they would both need to go into a care home. He was always reluctant to agree to it and said doctors always say you should stay in your own home as long as possible and my mum said to him you are not facing reality.... how will we cope? and my dad said we will cope with a home help and they did have a home help for a while but then my dad died and my mum had to go into a home. My mum always was of the impression that my dad was not facing up to the fact that one day he would get too old to manage on his own. You very rarely see married couples in care homes but there was a married couple in my mums previous care home but it is rare.

I also fully realise that my mum needs care and compassion. I had not seen her for ages and my last planned visit was put off due to me being unwell. I was going to see her this week but since my previous trip had to be put off, I decided to bring my visit forward because my mum said she got lonely and I thought it would be nice to go earlier and give her some company etc. She did not like my appearance so it upset her. Now she does not want to see me until it is changed. I fully understand it is dementia making her speak like this. However, I do not want to change my hair so if I go again looking the same and she sees me, it will trigger something in her mind and she will be upset again and then instead of a nice friendly peaceful visit, it will be her getting upset and having a go and then it will be sour just like my recent one. If I keep away then she will have nothing to be upset about and she will be calm and happy and I will be giving her the compassion she needs because if I keep going to visit her and she keeps seeing me as I am then this will never end and I do not want for her to be upset like this so if seeing me is going to upset her then the kindest thing would be to stay away. Its like if you know eating cheese is bad for you and causes migraines, you stay away from cheese. I am bad for my mother so the best thing to do is stay away if it causes stress.
 
Last edited:

canary

Registered User
Feb 25, 2014
11,662
South coast
It sounds like you have decided to not visit your mum again. Not everyone can cope with the effects of dementia - we all do what we can, but if you feel that you have reached your limit that is something only you can decide. My brother is the same - he cant cope with the idea of his mum not responding "normally" and hasnt been to visit for over a year. I do not expect to see him again until the funeral. Personally, I think he is missing a lot, but I accept his decision.
 

MrsTerryN

Registered User
Dec 17, 2012
769
It is good you have made a decision. Perhaps have email contact with the home every so often to see how your mum is
 

poster

Registered User
Dec 28, 2011
190
It is not something I want to do but it is something I feel I have to do under the circumstances for my mothers peace of mind. If she ever says she doesn't mind and I can still come then that's different and I know it may never happen, but when she changed her will and cut me out of it for no apparent reason and to this day she cannot tell me what made her do it, I never ever thought in a million years she would retract that and come to me and say she was wrong to cut me out of her will because I am her daughter and I should inherit whatever he has at the time of her death and she apologised. I was absolutely gobsmacked because I never expected that from her, so there is hope that she may do the same about my hair and say she was wrong. Who knows.
 

poster

Registered User
Dec 28, 2011
190
It sounds like you have decided to not visit your mum again. Not everyone can cope with the effects of dementia - we all do what we can, but if you feel that you have reached your limit that is something only you can decide. My brother is the same - he cant cope with the idea of his mum not responding "normally" and hasnt been to visit for over a year. I do not expect to see him again until the funeral. Personally, I think he is missing a lot, but I accept his decision.
He may just want to remember her as she was. I want what is best for my mum and I honestly thought I had found a solution by going to see her every couple of months. She said she got lonely so instead of three times a year it would be 6 times a year and I was really looking forward to it and each time I was planning to take a gift. My mum said she likes Belgian chocolates so I was going to take a box of Belgian chocolates each time to cheer her up and spend quality time with her.

Now she is so upset with my appearance I cannot do any of that and that is a pity. You might say the other solution is to change your appearance but everyone I have spoken to said I should not have to change my appearance and now I feel guilty that I am a terrible daughter because if I really loved my mother that much and really wanted to make her happy I would say to myself, to hell with it and cut off my hair.
 
Last edited:

fizzie

Registered User
Jul 20, 2011
2,730
It is not something I want to do but it is something I feel I have to do under the circumstances for my mothers peace of mind. If she ever says she doesn't mind and I can still come then that's different and I know it may never happen, but when she changed her will and cut me out of it for no apparent reason and to this day she cannot tell me what made her do it, I never ever thought in a million years she would retract that and come to me and say she was wrong to cut me out of her will because I am her daughter and I should inherit whatever he has at the time of her death and she apologised. I was absolutely gobsmacked because I never expected that from her, so there is hope that she may do the same about my hair and say she was wrong. Who knows.
It is so typical of dementia. The number of times my mum told me that she was going to leave it all to a cats home or that she was going to take it with her - I lost count of all the things she said but I was looking after her with minimum help and 5 times a day - which isn't as much as many do on here - she flung dung whenever she could - she was frightened about what was happening to her, she was vulnerable and she had no control and I had to learn fast how to cope with it all!!!

To be honest if I am ever ill and I have a load of hassle I won't leave my money to my kids either. People who are as ill as your Mum, not just with dementia but with multiple other problems too, need kindness and peace and love and support, they don't need a load of tit for tat.

That is really blunt, but dementia is really blunt too and the only person you are thinking of is yourself. You are not listening to what anyone says or taking any advice at all from anyone.

Your mum will not come begging - why? because she doesn't even remember the conversation - it is completely down to you to build bridges and continue to build them. You need to understand that and if you can't then perhaps for your own sake you should try some local conselling and that might help you to come to terms with it which would be really good and positive for you.
 

poster

Registered User
Dec 28, 2011
190
It is so typical of dementia. The number of times my mum told me that she was going to leave it all to a cats home or that she was going to take it with her - I lost count of all the things she said but I was looking after her with minimum help and 5 times a day - which isn't as much as many do on here - she flung dung whenever she could - she was frightened about what was happening to her, she was vulnerable and she had no control and I had to learn fast how to cope with it all!!!

To be honest if I am ever ill and I have a load of hassle I won't leave my money to my kids either. People who are as ill as your Mum, not just with dementia but with multiple other problems too, need kindness and peace and love and support, they don't need a load of tit for tat.

That is really blunt, but dementia is really blunt too and the only person you are thinking of is yourself. You are not listening to what anyone says or taking any advice at all from anyone.

Your mum will not come begging - why? because she doesn't even remember the conversation - it is completely down to you to build bridges and continue to build them. You need to understand that and if you can't then perhaps for your own sake you should try some local conselling and that might help you to come to terms with it which would be really good and positive for you.
You say I am not listening to anyone? But YOU are not listening to me. The only issue is my hair and my mum does not like it. I have been told be numerous other people not to change it so how can bridges be built when every time she sees me she sees a hairstyle she does not like. I did not want to continue to be here but I was persuaded to come back and for what? To be told off by a complete stranger and to be told I need counselling.

Im off and I wont be back again
 

fizzie

Registered User
Jul 20, 2011
2,730
i didn't tell you that you needed counselling, I said you might find it helpful - two completely different things
The issue is not your hair, it is not the Will, it is not the control, it is that your Mother has dementia.
I am not a complete stranger, I have read almost 150 posts trying to help you to sort out your feelings - I and many others have spent time and effort and lots of emotion trying to make things better for you. I don't know many 'complete strangers' who would do that !!!
 
Last edited:

Sterling

Registered User
Jun 20, 2013
69
In my opinion you have to do what you can live with.
Clearly there has been hurt caused by a break down in relationship between you and your mum. It can be frightening to make yourself open and vulnerable to her and her hurtful opinions. Relationships breakdown within families the world over and through time, good will and communication these can be resolved but I don't think you can apply the same sense and logic to someone with Dementia.
The ball is in your court because she might not have the capacity to realise the consequences of her actions or be able to do anything about it. The plumb line I use is... If I looked back 5 years from now, would I be happy with my choices, would my conscience be clear, could I say I tried my best (however limited)?
 

poster

Registered User
Dec 28, 2011
190
In my opinion you have to do what you can live with.
Clearly there has been hurt caused by a break down in relationship between you and your mum. It can be frightening to make yourself open and vulnerable to her and her hurtful opinions. Relationships breakdown within families the world over and through time, good will and communication these can be resolved but I don't think you can apply the same sense and logic to someone with Dementia.
The ball is in your court because she might not have the capacity to realise the consequences of her actions or be able to do anything about it. The plumb line I use is... If I looked back 5 years from now, would I be happy with my choices, would my conscience be clear, could I say I tried my best (however limited)?
I just spent a lot of time on the phone speaking to someone at the Dementia helpline. She said I HAVE to take care of myself. I should not feel guilty for taking a break if that is what I need. She said there is no right or wrong way of dealing with this and yes my mum is old and frail and has dementia as well as other health issues, but I am a valued human being and I count too. I said someone here said I am only thinking of myself and she said nobody has the right to say that to me. She said I have needs and feelings too. So for the moment I can only cope with my mum on the telephone and she told me how to respond to her in such a way that we do not end up at loggerheads and if she does say anything negative I have to distract her by talking about something else. She did also say that my mum is fixating on my hair if I sort it out to her wishes then it will no doubt be something else. I said to the lady on the phone, people jump through hoops for their nearest and dearest out of love, care and compassion and she said that I am a caring person because I visit and phone and worry about her being happy but that does not mean I have to jump when she says jump and do what she says because with dementia it will be one thing after the other and I will lose my own identity and that will not do me or her any good in the long run. She said I have to think about my needs and that's not being selfish or neglecting my mothers needs at all but she agreed that there is no right or wrong way of coping or doing things.
 

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
I just spent a lot of time on the phone speaking to someone at the Dementia helpline. She said I HAVE to take care of myself. I should not feel guilty for taking a break if that is what I need. She said there is no right or wrong way of dealing with this and yes my mum is old and frail and has dementia as well as other health issues, but I am a valued human being and I count too. I said someone here said I am only thinking of myself and she said nobody has the right to say that to me. She said I have needs and feelings too. So for the moment I can only cope with my mum on the telephone and she told me how to respond to her in such a way that we do not end up at loggerheads and if she does say anything negative I have to distract her by talking about something else. She did also say that my mum is fixating on my hair if I sort it out to her wishes then it will no doubt be something else. I said to the lady on the phone, people jump through hoops for their nearest and dearest out of love, care and compassion and she said that I am a caring person because I visit and phone and worry about her being happy but that does not mean I have to jump when she says jump and do what she says because with dementia it will be one thing after the other and I will lose my own identity and that will not do me or her any good in the long run. She said I have to think about my needs and that's not being selfish or neglecting my mothers needs at all but she agreed that there is no right or wrong way of coping or doing things.
Hello again, poster

I'm really really pleased you've had that conversation and hope that it helps you come to terms with your current situation. I agree with all her advice.

Have a lovely Christmas and try to stop worrying about your mum. My husband has only visited his mum every three months or so for years as she is a long way away too, but that doesn't stop him loving her or her loving him. We saw her on Sunday and she's thoroughly enjoying the run up to Christmas in the care home - there's so much going on at this time of year.

I don't think people who live locally always appreciate that there are different issues for those of us who live further away. Just because we're not able to visit so often doesn't necessarily mean we care any less.

Take care.

Chemmy
 

poster

Registered User
Dec 28, 2011
190
Hello again, poster

I'm really really pleased you've had that conversation and hope that it helps you come to terms with your current situation. I agree with all her advice.

Have a lovely Christmas and try to stop worrying about your mum. My husband has only visited his mum every three months or so for years as she is a long way away too, but that doesn't stop him loving her or her loving him. We saw her on Sunday and she's thoroughly enjoying the run up to Christmas in the care home - there's so much going on at this time of year.

I don't think people who live locally always appreciate that there are different issues for those of us who live further away. Just because we're not able to visit so often doesn't necessarily mean we care any less.

Take care.

Chemmy
Thanks... this is an extremely difficult situation. Despite people telling me not to bring up the subject of my hair and to try and change the subject, my mum phoned me today to discuss my hair. I wont bore you with the details but that is all she wanted to discuss, telling me she knows best for me and telling me my hair as it is looks horrible. For goodness sake, my cousin has just announced that she wants to dye her hair purple and her mother is fine about it but if that was me, my mother would have a fit. I was told this is not controlling it is Dementia but despite being dementia and despite the fact that I thought she would forget about it due to memory loss, this has not been the case. I really do not want to change my style and she said to me what about coming down and I said I don't know and she said if you sort your hair out.

I am tempted to say to hell with it and just tell her straight that I am not going to put up with it and terminate our relationship once and for all because trying to change the subject and thinking she will forget about this clearly is not working. I do not want to argue with my mum over this and am trying to put these different strategies in place to talk of other things but she just steers it back to hair and how awful I look.

I really am tempted to write to her and say if you cannot stop mentioning my hair I cannot continue our relationship and it is over.
 
Last edited:

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
Oh dear. I can see how upsetting this is for you.

Did she phone you? Do you have an answering machine and would she leave a message if you didn't answer? Or could you give her number a special ringtone on your mobile if that's what you use so you know it's her?

I'm just wondering whether you could ration her calls that way. If you felt up to it, you could call her straight back, but if you can't face it then you don't have to speak to her right away. Either way, it puts you in control of the phone calls, not her.

In case you think that's rude of you, can I just say that my daughter operates that system with everybody - she then calls people back when it's convenient for her :)

And I rarely answer my mobile - I never know where it is.

These are just suggestions off the top of my head. Please feel free to ignore them :)
 
Last edited:

poster

Registered User
Dec 28, 2011
190
Oh dear. I can see how upsetting this is for you.

Did she phone you? Do you have an answering machine and would she leave a message if you didn't answer? Or could you give her number a special ringtone on your mobile if that's what you use so you know it's her?

I'm just wondering whether you could ration her calls that way. If you felt up to it, you could call her straight back, but if you can't face it then you don't have to speak to her right away. Either way, it puts you in control of the phone calls, not her.

In case you think that's rude of you, can I just say that my daughter operates that system with everybody - she then calls people back when it's convenient for her :)

And I rarely answer my mobile - I never know where it is.

These are just suggestions off the top of my head. Please feel free to ignore them :)
She phoned me. All she wanted to do was discuss my horrible hair and what in her opinion I should do to it. I tried to change the conversation as advised by dementia and tell her about something I am doing tomorrow, but she was not interested and then wanted to continue to discuss my hair. I tried very hard not to reason with her but a couple of times I had to when she said the hair products my hairdresser had told me to use were no good and she told me what she thinks I should use.

Basically the conversation we had tonight was just the last straw and I now do not want any more contact with her, because at the end of the day if the strategies recommended by the Dementia helpline do not work then nothing will and this will go on forever and eventually I will break down. In fact I came off the phone tonight and spent 10 minutes in tears because I just cannot see any way out of this except to terminate our relationship.
 
Last edited:

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
Please take some time out, poster. You don't need any more of this right now. There will be plenty of things going on in the care home over Christmas and the New Year so she shouldn't be bored or lonely. You cannot be responsible for her day to day happiness, particularly living so far away.

I seriously suggest that you don't answer the phone to her for the time being as you're only get more of the same and you need to try and break the loop she's in, this fixation with your hair. Speaking with you regularly will just reinforce it. She can't stop herself, but you don't have to listen.

You need to be the one in control. Others on the forum will recognise the sinking feeling in your stomach when the phone rings and you don't want to answer it. Some get upsetting phone calls all day long - another sign of dementia, I'm afraid.

You can't change your mum's behaviour but you are starting to change the way you respond - and that's good. :)
 

poster

Registered User
Dec 28, 2011
190
Please take some time out, poster. You don't need any more of this right now. There will be plenty of things going on in the care home over Christmas and the New Year so she shouldn't be bored or lonely. You cannot be responsible for her day to day happiness, particularly living so far away.

I seriously suggest that you don't answer the phone to her for the time being as you're only get more of the same and you need to try and break the loop she's in, this fixation with your hair. Speaking with you regularly will just reinforce it. She can't stop herself, but you don't have to listen.

You need to be the one in control. Others on the forum will recognise the sinking feeling in your stomach when the phone rings and you don't want to answer it. Some get upsetting phone calls all day long - another sign of dementia, I'm afraid.

You can't change your mum's behaviour but you are starting to change the way you respond - and that's good. :)
Yes I wont answer the phone. I do unplug it. I plug it in to check who might have phoned and if its a friend I call them back.

I am fortunate that I do not live with my mum so do not experience her behaviour 24/7. I read some horrific things on here where people live with their husbands or wives or parents who are worse than my mum and they have to cope. My mum can be articulate, polite and well behaved in the home and act like a lady so it is not as if she behaves like this all the time. When the carers come to her room to give her medication she chats to them like anyone without dementia would in a charming and friendly way and if you did not know anything about my mum and was an observer you would think to yourself, what a nice polite well mannered friendly woman who has such a good sense of humour and who seems intelligent. Yes she can be all those things and yes she is intelligent (she used to be a secondary school teacher) but with me she has lately become fixated and will not let it go. She tried emotional blackmail by saying unless I change my appearance I was never to see her again. Tonight she is questioning whether I wish to see her so I think deep down she wants to see me, but if she is going to continue down this road of you do as I say or else then I am sorry but whether she likes or not, I will not be seeing her anymore.
 
Last edited:

Caseys

Registered User
Dec 10, 2015
37
I have taken some time to read a few of the other posts on this and other sections of this forum and realise there are others and also very young people who act as carers for whoever in their family has dementia. Some of the youngsters are still at school. My mum cannot be looked after at home so she is in a care home which is the best thing for her and they meet her needs. My mums dementia I believe is getting worse and she is becoming very argumentative and controlling. Instead of thinking of her I am mainly thinking of myself and how this is affecting me. My friend that I have spoken to all say that I need to take a break from my mum or I will become ill with the stress. I cannot make my mum understand that I do care about her. She thinks I hate her which is not true. Yes I do not like the way she is controlling me but deep down I do care and want the best for her but the dementia is driving wedge between us which may not be able to be fixed and at her age (92) she probably does not have a great deal of time left, but at the moment as things stand if I try to bridge the wedge it will make matters worse so I keep away and that doesn't make it any easier either because my mum thinks I am keeping away because I don't care.
I think we all have to think of ourselves as we cannot care if we are drowning! X
 

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
Yes I wont answer the phone. I do unplug it. I plug it in to check who might have phoned and if its a friend I call them back.

I am fortunate that I do not live with my mum so do not experience her behaviour 24/7. I read some horrific things on here where people live with their husbands or wives or parents who are worse than my mum and they have to cope. My mum can be articulate, polite and well behaved in the home and act like a lady so it is not as if she behaves like this all the time. When the carers come to her room to give her medication she chats to them like anyone without dementia would in a charming and friendly way and if you did not know anything about my mum and was an observer you would think to yourself, what a nice polite well mannered friendly woman who has such a good sense of humour and who seems intelligent. Yes she can be all those things and yes she is intelligent (she used to be a secondary school teacher) but with me she has lately become fixated and will not let it go. She tried emotional blackmail by saying unless I change my appearance I was never to see her again. Tonight she is questioning whether I wish to see her so I think deep down she wants to see me, but if she is going to continue down this road of you do as I say or else then I am sorry but whether she likes or not, I will not be seeing her anymore.
My mum was in a specialist dementia home and when I went to see her, like you, I was there for hours at a time. So I used to sit and quietly observe the other residents, some of whom, unlike my mother, were still pretty articulate. I remember hearing two elderly ladies having a chat and one of the was having a real old moan about everything and everybody and was planning their 'escape' from the home (yes, really). The other lady sat there nodding, but looked scared to bits. :D This was when I realised that although at first glance they seemed perfectly 'with it', their dementia was really in control.

And then a member of staff came round with a cup of tea and a biscuit, had a friendly chat and the two old ladies were as nice as pie to her face. Their behaviour could snap from one state to the other in an instant and sometimes politeness and social skills are deeply ingrained and are acted upon automatically.

Upsetting as it is for you personally, everything your mum is doing is normal in 'dementia- world'. All we can do is deal with how we respond. Not answering the phone puts you in control, so well done there. Some people can't bring themselves to do that and carry on getting totally stressed.

You might find that in a little while, if you phone her, you will catch her unawares when she is not actively thinking about your hair. But only do that if or when you are ready, and be prepared to cut the call short if she starts again. I know at the moment you want to stop all further contact, but it doesn't have to be that final, and that might be easier on your conscience. Take a break for a month or so, review the way you feel and decide then. You can extend the break or try a call - but again, you are the one in control.

My mum was in a care home from Feb 2005 to Dec 2012 (in fact, she passed away on Christmas Eve) and I never spoke to her once on the phone for all those years. She would only say 'Hello' and 'I'm fine' on the phone and that was it, so I just accepted that that was the way she was now, there was no way I could change her and I moved on. I didn't 'do' guilt, I'm afraid.
 
Last edited:

poster

Registered User
Dec 28, 2011
190
My mum was in a specialist dementia home and when I went to see her, like you, I was there for hours at a time. So I used to sit and quietly observe the other residents, some of whom, unlike my mother, were still pretty articulate. I remember hearing two elderly ladies having a chat and one of the was having a real old moan about everything and everybody and was planning their 'escape' from the home (yes, really). The other lady sat there nodding, but looked scared to bits. :D This was when I realised that although at first glance they seemed perfectly 'with it', their dementia was really in control.

And then a member of staff came round with a cup of tea and a biscuit, had a friendly chat and the two old ladies were as nice as pie to her face. Their behaviour could snap from one state to the other in an instant and sometimes politeness and social skills are deeply ingrained and are acted upon automatically.

Upsetting as it is for you personally, everything your mum is doing is normal in 'dementia- world'. All we can do is deal with how we respond. Not answering the phone puts you in control, so well done there. Some people can't bring themselves to do that and carry on getting totally stressed.

You might find that in a little while, if you phone her, you will catch her unawares when she is not actively thinking about your hair. But only do that if or when you are ready, and be prepared to cut the call short if she starts again. I know at the moment you want to stop all further contact, but it doesn't have to be that final, and that might be easier on your conscience. Take a break for a month or so, review the way you feel and decide then. You can extend the break or try a call - but again, you are the one in control.

My mum was in a care home from Feb 2005 to Dec 2012 (in fact, she passed away on Christmas Eve) and I never spoke to her once on the phone for all those years. She would only say 'Hello' and 'I'm fine' on the phone and that was it, so I just accepted that that was the way she was now, there was no way I could change her and I moved on. I didn't 'do' guilt, I'm afraid.

Oh dear sorry that your mum died on Christmas eve. This time of year must be difficult. :(