feeling guilty

poster

Registered User
Dec 28, 2011
190
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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.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
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Rock and a hard place. I have a great deal of sympathy for you.

What do you mean by "bridge the wedge"? Because if you think something you do today will necessarily be retained in her memory tomorrow (or even an hour from now) I'm afraid you are destined for disappointment.

I cannot make my mum understand that I do care about her

Sadly no, you probably can't. You just need to get it firmly into your own mind that you care about her.

It's not clear from your post - are you currently visiting? If you are, perhaps reduce your visits: you need to make sure (for your own peace of mind) that she is being well-taken care of, but you also don't need to be the punching bag.

Do try to think of it this way: if she was well, would she want you to sacrifice your own health and mental well-being for her? Most loving parents would not. I know I wouldn't and my own mother said to me in a moment of clarity: I hope you have something outside of this (waving hand, relating to her care).
 

Witzend

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Aug 29, 2007
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SW London
Obviously I don't know your mother or the state of her short-term memory, but it's often the case that people can visit very often, but their loved ones still think they never, or hardly ever, come, because they can't remember the last recent visit. So it might be the case that however often you visited, your mother might still imagine that she doesn't see you.

On one occasion, when I was visiting my mother, I met my brother just getting into his car to go, just as I was arriving. He lived closer than I did and visited a lot.

Yet my mother still told me, very soon after I'd arrived, that she hadn't seen him for weeks - 'He never comes near!'

Sadly, when it comes to dementia, it can often seem that whatever we do, it's wrong, or it isn't enough, in the eyes of the PWD. One Christmas, before she went into her CH, I was reduced to tears by my mother saying truly horrible things to me over the phone - why was she there all alone on Christmas Eve? I was an appalling daughter, she was cutting me out of her will, etc.
She had completely forgotten that of course she had been invited, and that only hours earlier she had phoned to tell me she was very sorry, but she'd really rather stay quietly at home - and that I had driven the 60 miles each way anyway, to take her presents and some nice food.

However it is equally often the case that these upsets or fixations (like your hair) do pass away and are forgotten. Sometimes it happens very quickly, sometimes it can take quite a while. I do hope you will find that this unhappy phase with your mother will be over and forgotten soon.
 

Sterling

Registered User
Jun 20, 2013
69
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I think that you need to listen to the people around you who are worried for you. For me, my mum in hospital is confrontational and very angry so I only visit once a week - this is as much as I can cope with. The worry of the whole situation was overwhelming. I could agree to all that she wants to happen but she would not be safe and she has no comprehension of the situation. I feel for you - it's so tricky but you do need to look after yourself first.
 

poster

Registered User
Dec 28, 2011
190
0
I don't think I have made things quite clear. My mum lives about four hours away from me in a very good care home so I know she is being well cared for so I have no worries on that score. What I meant by bridging the gap is this.........

I have not been visiting as much as the other relatives in the home because of the cost of doing so. I used to go by train and train fare was very expensive and then cost of accommodation. My mum finally understood about this and did not mind. Then I found a cheaper way to travel by coach and it cut the cost of the travel in half so I could go more frequently.. so far so good. :)

I was supposed to visit during the summer (by train as I had not at that time found out about the coach). I had an accident and broke my leg so could not go. I was three months out of action. My mum understood. Now that I am recovered I decided to visit as a visit was long overdue. I cannot spend Christmas with my mum because I have nowhere to stay so I usually go just before to see her. I arranged to see her the week before Christmas. Since I had not been on my summer visit and she got lonely I brought the visit forward as a surprise to my mum which she said was a nice idea and we had a good day together.

I have actually posted about this in a separate post but towards the end of my visit things went badly wrong. My mum said she did not like my hairstyle and if I did not change it she did not want to see me again. She said at the time it needed to be shorter. It is currently shoulder length. We argued about it with me putting my foot down saying I did not want to change it because I liked it. I got a lot of verbal abuse back saying how can you like it as it is... don't you look at yourself in the mirror and think you look appalling etc.

I left contacting her for a few days to calm down and then I phoned her and she mentioned it again but had totally forgotten that she said it should be cut shorter and I did not press the matter... I more or less said I did not want to change it as I and a lot of other people liked it. She said then do not come here again so I said ok we can keep in touch on the phone and she did not want that either saying we had nothing to say to each other so what is the point. She ended up by saying she wanted me to have my hair exactly as I wished but don't come again because the stress is too much for her at her age (the stress of me showing her up with a hairstyle she thinks is horrible). I agreed to her demands of no phone or visit and now she thinks I am a very unfeeling cold person. Does she want me to get on bended knees and say no mum whatever you want me to do I will do but please allow me to have contact.

A friend of mine suggested I phone and speak to the home manager about this because my mum could get confused and complain that her daughter does not phone or visit and the home should know why and know that it is my mum who told me not to phone or visit and I am simply doing as she asks. I did not turn round and tell my mum I do not want to see you anymore. My mum also thinks my recent visit was only brought forward out of duty not because I really wanted to and I said if I was merely visiting you out of duty I would not have brought it forward.

My mum still recognises me and knows when I visit unlike some dementia patients.
 

meme

Registered User
Aug 29, 2011
1,953
0
London
you want the care home to know you are a good caring daughter and only not going to visit because your mother said not to
you are not going to visit because your mother said not to and the hair issue which seems to be as much yours as hers..but you want to be seen and understood as a caring daughter
a tough call...caring could be seen as doing not saying ..since the words with your mother tend to clash and the sense gets lost...you need to do what you know is right for you..that may be visiting Mum it may not.... but others will not give permission that counts.. only you can know you are doing all you can..and that will be good enough
 

fizzie

Registered User
Jul 20, 2011
2,725
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I have to agree with Meme but I'm not sure why you've started another thread on this one.........lots of us answered the same questions on the last thread. I hope you find some peace with your Mum, I really do, and I hope you also find some inner peace with whatever you decide.

take care and thinking of you whilst you struggle with this xxx
 

poster

Registered User
Dec 28, 2011
190
0
you want the care home to know you are a good caring daughter and only not going to visit because your mother said not to
you are not going to visit because your mother said not to and the hair issue which seems to be as much yours as hers..but you want to be seen and understood as a caring daughter
a tough call...caring could be seen as doing not saying ..since the words with your mother tend to clash and the sense gets lost...you need to do what you know is right for you..that may be visiting Mum it may not.... but others will not give permission that counts.. only you can know you are doing all you can..and that will be good enough

Sorry buy your post is confusing. I only need the home to know that she is unhappy because then they will know how to deal with her because after all, she is in their care. I also need them to realise that she told me to stay away and that for the sake of her peace of mind, I am doing so. However, what I am not prepared to do is change my hairstyle which would also be for the sake of her peace of mind because once I start doing that then no doubt there will be other things in the future and my life will no longer be my own. I will no longer feel an individual with my own thoughts and ideas. I will become a mirror image of my mother and what she wants to mould me into and I am not her and never will be
 
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poster

Registered User
Dec 28, 2011
190
0
ok well I honestly feel there is no point my being on this site anymore so I shall be deleting my profile.. Have a good Xmas everyone

Cheerio

p s there is no way to delete a profile on here (someone else wanted to do it and found they couldn't) so all you have to do I log out and not post. I really do not feel this is the site for me anymore.

Bye bye
 
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jasmineflower

Registered User
Aug 27, 2012
335
0
Hi
Hope you do come back here and read the replies because people in TP really do care and try to help.

I think if I were in your position I might email or write to the care home manager explaining the problem you currently have. Tell them that she no longer wants you to visit because of a minor issue over your hair that she has become fixated on.

Ask the manager how your mum is on a day to day basis: is she happy and content or asking after you?

If she is happy then you can visit if you feel you want to, but with no feeling of guilt if you don't. If your mum is fretful and asking why you don't visit, then you could ask the care home if they have any suggestion to make your next visit more positive.

J x
 

poster

Registered User
Dec 28, 2011
190
0
Hi
Hope you do come back here and read the replies because people in TP really do care and try to help.

I think if I were in your position I might email or write to the care home manager explaining the problem you currently have. Tell them that she no longer wants you to visit because of a minor issue over your hair that she has become fixated on.

Ask the manager how your mum is on a day to day basis: is she happy and content or asking after you?

If she is happy then you can visit if you feel you want to, but with no feeling of guilt if you don't. If your mum is fretful and asking why you don't visit, then you could ask the care home if they have any suggestion to make your next visit more positive.

J x

I have come back to say I did speak to the home manager. She said my mum was fine and happy and jolly. All she said was she was sorry to hear this. I would have thought she may have said that she will talk to my mum and try and find out if she can help her because it is all very well to say she is fine and jolly but they do not see her when she is in her room behind her closed door. She may well not be fine and jolly and so on. She may be sitting there thinking she has an awful daughter etc etc which by the way is not true. How can any manager listening to what I have told her just fob it off and say I am sorry. She needs to speak to my mum
 
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Cat27

Registered User
Feb 27, 2015
13,057
0
Merseyside
I have come back to say I did speak to the home manager. She said my mum was fine and happy and jolly. All she said was she was sorry to hear this. I would have thought she may have said that she will talk to my mum to explain that I am concerned but she did not so I felt the phone call was a waste of time. I wish I hadn't bothered because it achieved nothng.

It wasn't a waste of time. You know your mum is fine & happy. Surely that's good?
 

poster

Registered User
Dec 28, 2011
190
0
It wasn't a waste of time. You know your mum is fine & happy. Surely that's good?

Being fine and happy means being fine and happy all the time. My mum is only fine and happy away from me. Has it ever occurred to you that people can put up a front? I knew a married couple who put up a front of having a very happy marriage when in fact they were not and eventually they got a divorce.

Its called keeping up appearances. My mum even tried to keep up appearances with me and when I once asked her how she was she said fine but I knew jolly well that was not true. Eventually she told me she was not fine and it was a pretence because she did not want me to know but as I am her daughter I could tell that she sounded unhappy.
 
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fizzie

Registered User
Jul 20, 2011
2,725
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I wouldn't worry too much - the care home manager will have such a lot of experience of people who have difficulties in all sorts of areas and the manager will be able to tell if someone is content or not. Seems like she is comfortable and content and so you can rest easy now. How lovely for you, the phone call was not a waste of time because as previous poster said you relax and enjoy Christmas x
 

poster

Registered User
Dec 28, 2011
190
0
yes but that does not solve our problem of her controlling behaviour towards me does it. And it doesn't solve how I can get on an even keel with my mum where we have mutual respect for one another.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
You are not going to change your Mum. You were never going to be able to change someone - the only person we can change is us - but when someone has dementia you have no chance of changing that person, no chance at all and you will just make yourself miserable (and possibly her as well) in the process of keep trying to push it. You have said you only see her every 3 months and I can guarantee you that she won't be remembering in between times (other than the odd fixation and even then she won't remember that when you are not there because her memory won't be triggered). .

If she is happy and content then surely that is what you want for her more than anything else in this world?
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Poster, I know that this is understandably very upsetting for you, but I get the impression that you are trying to relate to her as if she did not have dementia. Please, please take on board that the way she is acting is typical of dementia - she cannot help it.
You seem to be trying to persuade her that she is wrong and are expecting her to understand your arguments and agree with you. This is not going to happen - dementia will not allow her to understand, far less agree. Someone on here said that standing up for yourself against someone with dementia is like putting your head into a lions mouth.
You also seem to expect that once you have gone that she will be thinking about what you have said and that next time you speak to her she will still be remembering what you and she said. Both are likely to be untrue. People with dementia can change what they say/feel in a heartbeat. Mum had a fixation that a friend of hers was stealing from her and she would go from saying really nasty things to her to telling me that she was such a good friend that she didnt know what she would do without her. Each time she was adamant that she really meant what she was currently saying (whichever stance she was taking) and could not be persuaded that she had said anything else. I doubt that she really means that she never wants to see you again.
 

poster

Registered User
Dec 28, 2011
190
0
Poster, I know that this is understandably very upsetting for you, but I get the impression that you are trying to relate to her as if she did not have dementia. Please, please take on board that the way she is acting is typical of dementia - she cannot help it.
You seem to be trying to persuade her that she is wrong and are expecting her to understand your arguments and agree with you. This is not going to happen - dementia will not allow her to understand, far less agree. Someone on here said that standing up for yourself against someone with dementia is like putting your head into a lions mouth.
You also seem to expect that once you have gone that she will be thinking about what you have said and that next time you speak to her she will still be remembering what you and she said. Both are likely to be untrue. People with dementia can change what they say/feel in a heartbeat. Mum had a fixation that a friend of hers was stealing from her and she would go from saying really nasty things to her to telling me that she was such a good friend that she didnt know what she would do without her. Each time she was adamant that she really meant what she was currently saying (whichever stance she was taking) and could not be persuaded that she had said anything else. I doubt that she really means that she never wants to see you again.

I guess you are right. I will leave it and wait for her to contact me however long it takes. I will just get on with my life and that's that and if anything serious happened to her the home would let me know. A couple of years ago she cut me out of her will. She said I was in a full time job so did not need any money from her. She then changed her will and left it all to the British Heart Foundation. Then suddenly 5 months later, I got a phone call from her saying she had changed her mind and that she was wrong and she was putting me back in her will. I asked her why she did what she did and she said she had no idea. However, she never made a new will because her solicitor told her that it would cost around £100 and she could not afford it so her solicitor suggested she cancel the old will and leave my mum with no will which means she will die intestate and everything she owns at the time of death will automatically go to me as next of kin. This makes me assume that she will one day say she wants to see me again regardless of what I look like and if she doesn't then I will just continue to get on with my life.
 
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fizzie

Registered User
Jul 20, 2011
2,725
0
Your Mum is not going to remember what she did 5 months ago with a will or anything else! She has dementia which is amongst other things memory loss. She simply will not remember. It is nothing to do with her not loving you or being cross with you, or controlling you. All the behaviour you have described is typical of someone with DEMENTIA - she is not doing any of this deliberately.

I really don't understand why you are taking all this so personally. She has a disease which is eroding her memory, her logic and her understanding of the world as we know it, it quite simply is not personal.

You need to understand that she is the one who needs compassion and understanding. You said she told you she is 'too old for all of this' and she is right, she needs peace and understanding and care, she needs to be looked after and nurtured, she needs love and kindness. This part of her life is about what she needs.

You need to remember that your mum loves you and that this is not a personal vendetta against you!
 

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