a vist from my daughter

Discussion in 'I have dementia' started by muriel67, Jul 13, 2015.

  1. muriel67

    muriel67 Registered User

    Apr 10, 2014
    I have been posting on here a lot lately about my situation with my daughter.Well she came to see me on Saturday and we had a good talk.I asked her how she felt about my diagnosis and how she was feeling because she's a bit short with me lately.I wish hadn't asked.She said that it felt like she had another child when she has to explain things to me more than once and the strain was too much that's why she gets angry.She also said she feels like she wants to stay away because she cant cope with me like that.I told her I try very hard to not cause her any extra stress but it fell on deaf ears.I wear a sos bracelet because sometimes I wander the streets at night in my jamas or in the daytime and I have no idea were I am or were I have been.I took her name of the contact part so that if I am found alone and taken to hospital they wont contact her and she doesn't get disturbed.I really do try to make it easier for her but I don't know what I can do to help her cope.S he mentioned me going in a home again and coming to see me every now and then,I asked her what that meant and she said well you wont know.She just comes out with these things as if its nothing and its funny.but it isn't .I don't have any other family apart from my sister who lives half hour away but shes no support she says the docs have got it wrong and im just forgetful.if only.I asked my sister if I could put her name as a contact on my bracelet she said no because I have to get up for work in a morning.I hate dementia it makes me feel isolated and abandoned by my family who before I had the diagnosis were very supportive and close.Now I don't feel like I have got one.I know they might be frightened of the future but they want to try a day in my shoes.
  2. creativesarah

    creativesarah Registered User

    Sometimes family can be the hardest to deal with

    Have you got a close friend who would be willing to give their number

    I am sorry you feel so alone
  3. Kjn

    Kjn Registered User

    Jul 27, 2013
    I'm so sorry your daughter feels that way, even more that she felt the need to tell you.
    I could never say anything like that to my mum or dad (mum who cares for dad with mixed alz/vas).

    I don't know what to say , but stick with us xxxx
  4. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    I think she is sad and frightened because she is losing the Mum who has always watched out for her and protected her and kept her safe and encouraged her and laughed with her and cried too.

    I feel sad because, no matter what I can tell her, she won't know until it's too late, that the memories she has now and the memories she can still make with you, are for her and for you too. She will need to use those memories when yours fail....

    I am sorry too, that you feel sad and that think you are losing her. You are not you know. She will be there for you even when you can't remember who she is.

    So put her name and number in your SOS. If the Authorities phone, she can always ask that they find other help for you, but at least she'll know that you are safe.

    Wisih I could help more.x.
  5. starryuk

    starryuk Registered User

    Nov 8, 2012
    #5 starryuk, Jul 14, 2015
    Last edited: Jul 14, 2015
    In some ways it is a compliment that your daughter trusts you enough to be so honest and open. I was never able to confide in my mum, something I always regretted.

    I am sorry you feel so alone, Muriel. Do you have a friend or neighbour who could help you? Your daughter is your next of kin, so put her name as emergency contact anyway. I think your daughter would actually be upset if nobody told her you were in hospital or having problems of some kind.
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I`m shocked by your daughter`s attitude muriel and feel very sorry you feel so alone and unsupported.
  7. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I have to confess that I too am shocked at your daughter's reaction. I hope when she has time to think it through she will realise that is is about you and not her.
  8. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Your daughter is only thinking of herself. She has zero empathy for you.:(
  9. its a struggle

    its a struggle Registered User

    I'm sorry that your chat with your daughter did not have a more positive outcome.

    From earlier posts on another thread (copied below) it seems that you both have a lot to cope with. I expect your daughter was feeling frightened about the future, and tired with 4 children to look after as well. She may just have said how she was feeling at that moment.

    I hope you can both access some help to get you through this difficult time.

    Thread: any ideas about what to do to cope when its all too much.I think my daughter is very frightened of the future because my mom had dementia early ,now I have it so maybe she thinks its her destiny too.She has 4 boys the eldest 18 the others 4,5,12. And the youngest have special needs I think maybe she thinks shes going to be a carer forever.But I would never want her to be my carer im hoping she will talk to me at the weekend and we can work something out.i do love her a lot.
  10. Essie

    Essie Registered User

    Feb 11, 2015
    Hi Muriel, I have to say I'm shocked too at what, and how, your daughter spoke to you and I'm sure it was shocking and hurtful for you to hear.

    You were trying to be clear and honest about your situation and it seems your daughter can't or won't interact with you on that level right now - whether she ever will we just don't know. Of course your condition will have consequences for her and it seems that is what she is focused on at the moment.

    Realising that someone we thought would be there for us might not be -especially when you are trying so hard to minimise what you are asking of her and she's still saying no must be very, very hard on top of the rest of what you are dealing with Murial, I am so very, very sorry that you find yourself in this horrible situation.

    Let's hope it is just a 'phase' and that she comes back on board as a supportive daughter asap. However..... 'caring' in both it's broadest and narrowest terms isn't for everybody - especially sometimes for a parent - a set idea that they look after us and not the other way round, or maybe your daughter just cannot see how another caring role, in addition to her parenting will be possible - whatever the reason I think it might be a good idea to explore some alternatives for your future to make sure it is as good as it possibly can be and that you feel secure and happy in how things will be rather than frightened.

    There are so many options and obviously you will know best what will suit you but a planned move, when the time is right, to some type of supported retirement complex where there are others for company and assistance on site and perhaps a higher level care facility on site too, for the longer term, might make you feel more in control.

    I suppose what I'm saying is don't put all your eggs in one basket - for all sorts of reasons your daughter might not prove to be the support your need and deserve and rather than be at the mercy of her feelings about the situation taking control into your hands might be the best thing.

    Best wishes and big hugs.
  11. Oxy

    Oxy Registered User

    Jul 19, 2014
    Well what do you say? I'm absolutely appalled at your daughter's response. I feel that she sees a parent as merely a resource for her needs and not beyond. How inhumane and selfish can a person be.
    I think Essie is so correct in that you really need to ensure that you have everything in place for all eventualities. I'm sure it feels so hard though as dementia symptoms come to the fore when upset so she has not been of any help to you.
    Clearly I don't know how severely disabled her youngest is but that rhetoric was inexcusable. Maybe all this is a bit harsh and she actually needs to see her doctor for help (that is if previously she was caring and loving).
    Whatever the reason my thoughts are with you and that you can muster the strength to do the necessary. Alzheimer's soc or admiral nurses may be able to help over phone or face to face. You need input. Social services ?
    Very best wishes.
  12. muriel67

    muriel67 Registered User

    Apr 10, 2014
    ive decided that im going to take my doctors advice and look into extra care accommodation.My thoughts are that if I move now whilst I am still aware of things and able to decide my future it will be easier for both my daughter and myself in the long run.Also if I feel comfortable in the new place it can allay my fears that nothing untowards might happen when I get to the stage I cant communicate events.At least it will stop me wandering the streets at night because there will be someone there 24 hours.I do think my daughter is very upset about whats wrong with me and finds it hard to accept that the mom who has always been there for her eventually wont be.But its hard to listen when she can be so flippant in her comments and treats it as funny.When my mom had this it made me want to hang on tighter to her and I wouldn't dream of saying the things she does.I think I need to focus on what I want and take back some control then I will feel better about things.:):)
  13. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I'm afraid that I don't think having a child with special needs means that someone cannot support their mother when she needs support.
    Both my daughters have sons with special needs and I would be heartbroken if I thought that they wouldn't be supportive of me if I develop dementia.

    No matter how frightened of what the future holds your daughter may be, you I'm sure can multiply that fear tenfold and the least she can do is to be there for you. Not necessarily every day nor always hands-on but just so you know she will care enough to answer a cry for help at a time of crisis.
    It certainly doesn't help you to be told that she wants nothing to do with it. That is just cruel and heartless.

    I think your decision to move where more help and supervision is available is the right one. I do hope it works out for you.
    You sound a very caring and unselfish mother - perhaps too much so at this unsettling time in your life. I wish the other family members were likewise.
    Do keep coming back here - the support we can give may not be of any practical use but we will listen and care. xxx
  14. Essie

    Essie Registered User

    Feb 11, 2015
    I'm so pleased Murial. You have said everything here that I would second - making these decisions now, for yourself whilst you are still fully able to is absolutely the right the thing to do. So many of us bury our heads in the sand when it comes to difficult decisions - especially health based ones and the fact you are facing this head on and making good, positive choices - you truly are an inspiration! :) :)
  15. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    Hi Muriel - I'm so sorry you're going through this. If I'm honest I can totally understand how your daughter feels and how she wants to stick her head in the sand regarding your illness, and especially being your SOS contact. That's how I feel inside - I want this all to go away and not to be bothered by it.

    But the difference between your daughter and myself is that I will always do the right thing, no matter how I feel, because ultimately I'd be devastated if something happened and I was unaware of it. And because I love my mam and dad, despite feeling a bit trapped by it all.

    I do hope your daughter comes round to the idea of your diagnosis and offers you a bit more support, emotional if not practical.

    Keep posting here because everyone understands. xx
  16. muriel67

    muriel67 Registered User

    Apr 10, 2014
    Thankyou everyone for your input ,You have helped me to decide what to do.I had been mulling over the idea of looking at moving to somewhere I could live with support for a while.But the events recently have really pushed it to the front of my mind.Essies post really hit home and got me thinking maybe its a good idea to look for support elsewhere.And everyones input has been so kind.I shall keep you updated on what happens next.Its a huge help to be able to put into words how things are and to know people on here understand and are very supportive.You all give me the courage to take the next step.:):):)
  17. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hello Muriel, I am glad you have decided to look into a supporting living flat or such like while you can still make a clear choice. It will keep you safe, but also help you meet people who understand what you are experiencing and can be a real support and friend. My own mother is now in a care home but it is a very loving and caring place. There is friendship and laughter and she feels very happy to be living there. She has told me on her clear days that she is happy and that I made a good choice. When she is confused she thinks she is on holiday there. Going on holiday was my mums favourite thing so either way she is happy.

    I hope you find a new friendly home too and that your daughter can accept your illness and be there for you.

    You are an incredible and courageous woman to face dementia and still be worrying about others. I am certain you have friends somewhere just waiting to meet you.
    Lots of love and strength
  18. Essie

    Essie Registered User

    Feb 11, 2015
    Ahhh Quilty, What a lovely post!

    And Murial, as Quilty says, truly you are amazing and I wish you the very, very best for the future.
  19. Optomistic

    Optomistic Registered User

    Jul 24, 2014
    Hi Murial,

    I hope you find somewhere to live where you feel safe and happy this will help you a lot.

    I looked after my Grandma aged 19 with dementia with my mum. I am now a fulltime carer to my husband who has Alzheimers. I was always there for my mum and dad when they were old and dont know how anybody can just turn away.

    I hope manage to enjoy life for a good while yet my husband is still having some good days.

  20. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    Ontario canada
    Muriel, I have given this Some thought since reading your posts on TP. I want to say I feel very empathetic for your position...With your daughter...it is very hard to swallow.

    I feel so relieved that you have come to a decision that looking at a change in your living arrangement would be a possibility. I was glad to hear that you are on that path.

    I do have to agree this craigmaid...your daughter is probably completely overwhelmed with everything that is changing and frankly I do admire her ability to be honest about her feelings. I do also think that your daughter will be fine with you using her as contact for emergencies...she WILL come around.

    in my opinion (for what it's worth), some members have been very harsh about your daughter. I don't think that is fair to judge on limited information. She has four children and she sounds like she has anxiety issues. I hope for her sake, and yours, she will get her feelings sorted out...whatever it takes.

    I wish you all the best Muriel, you sound like a very considerate mom.


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