repulsion doesn't anyone feel this?

Discussion in 'ARCHIVE FORUM: Support discussions' started by susieb, Apr 30, 2006.

  1. susieb

    susieb Registered User

    Apr 16, 2006
    26
    Have been visiting this site for a week or so, and I am in awe of most of you. I just visit my mum, don't directly care for her - but I'm just horrified, immobilised by what's happened to her. I can't help her and if anything I'm just repelled from the whole situation, but I keep going back. Its as if she's not there anymore, and if I don't visit, I feel better, but I can't not visit, I have to go. I can't move on, and I can't bear it here.
     
  2. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Suesieb

    We all feel like you at times, we want out but be know we must stay, love is just too strong. It is difficult to know what to say to make you feel better, AD torments us but to look on the bright side the one we care for is mostly oblivious to what we are going through. Try not to look ahead, one day at a time is the most I can cope with but I am coping - well most of the time. You will find a way through and remember that by just being there you are helping her although it is not obvious.

    Hugs

    Dick
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Susie.
    I know just what you mean Susie; but the truth is you can bear it, you do bear it and you will continue to bear it, because as Dick said "love is just too strong".
    With love
    Amy
     
  4. susieb

    susieb Registered User

    Apr 16, 2006
    26
    Thank you, but you see the 'love is just too strong' is the bit I've forgotten - I loved her as she was.
     
  5. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi susieb

    Im not sure what to say to that!
    my feelings towards my mum cant and wont ever change, she's my mum, the disease on the other hand i hate with a vengence :mad:
    do you think the repulsion you feel is aimed at the dementia not your mum and your getting it mixed up.
    I do hate the fact that mum shuffles instead of walking, and that she dosent often make it to the toilet, and that she has food stains on her clothes when i go in to see her, but i blame dementia.
    do you think perhaps your frightened and preparing your self for the worst, by shutting out your feelings so it will be easier to deal with at the end.
    i know ive just felt like getting in the car and going and comming back when everything is over and done with, but she needs me and my dad needs me and for the short amount of time she has left i have to do this for her.

    sorry susie not much advice perhaps more questions than answers:)
    at the end of the day how you deal with it personal to you
    best wishes x
     
  6. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    Hiya

    I love my dad far too much to let him go through this alone.

    What are my options? The easy way.....leave him there in the home alone. He is safe, fed, watered and "cared" for. Carry on living my happy little life as I please

    Or

    Visit him, take him out , spend time with him...as difficult as it is. Of course I loved him as he was....that is WHY I will devote as much time as I can to visiting him, taking him out, listening to music, working out what will make him smile, even for a moment. I LOVE him dearly. He's MY dad. and, no matter how hard it is, I will do anything I can to give him a moment's happiness and to salvage a smile form this evil illness. AD will NOT steal his happiness while I can still make him smile. I will fight this illness and give him something to be happy about...even for the hour or so I spend with him. He says to me, "You're a very nice person...you've made my day....I know you are the one who will make sure I have a happy life." You're damned right I will. You're MY DAD and I LOVE YOU and I don't care how hard this is for me I'll do whatever I can for you. All I know is that when I was a child, if anything had happened to me, he would have devoted his life to making me happy (he did even though nothing happpened to me !!) and now I want to do the same for him. It's the very least I can do.

    Sorry, got a bit carried away.
    I know it's hard, SusieB, but you must do as much as is right for you and your mum.

    Good luck

    Jarnee

    (sorry about the rant) :rolleyes:
    X
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    ...but she didn't choose to change herself. She didn't have the option to remain as she wanted to be.

    I know it is hard.

    Dementia is the ultimate test of love.
     
  8. Áine

    Áine Registered User

    Repulsion? Yes, very much so. When my dad first started to be noticeably ill, probably nearly a year ago now, I didn't want to go anywhere near him. He was drooling and unshaved (that was while he was still living at home alone) and a bit iffy. Didn't want much to see him never mind physically care for him.

    We didn't have much of a relationship when I was younger, he's very passive and silent. He didn't do anything wrong .... just didn't really DO anything. I wonder how I'd feel if like you and your mum I'd loved him as he used to be.

    Somehow it's all changed, gradually at first, but changed hugely just over the last few weeks. Partly it's changed because I've been caught in situations where I've just HAD to get on with it and sort him out. Partly it's changed because I've watched carers (since he was in repsite and then nh) caring for him and learned how to manage things. Partly it's changed because I realise he's so grateful for my help and I can make a real difference to his life. For me it's been an experience of learning to love him as much as learning to care for him.

    I don't quite know what changed it for me. But I realise it's not only changed and enhanced HIS life .... it's changed me too (for the better). What I suggest is that you let yourself feel what you feel - and if that's horrifed and immobilised so be it, that's OK. Don't give yourself a hard time about it, don't try to force yourself. Let yourself be where you are and accept yourself as you are, and love yourself as much as you loved the mum that your mum was. Stay calm, give it time, trust that in the end love will win the day :)
     
  9. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Trapped

    Dear Susieb,
    Different shades of similar emotions: most of us have been in the same boat, and whilst I have not felt repulsion, then I do admit to feeling angry at times, and trapped. It is not my husband's fault that he has AD, but I am nevertheless trapped in this hopeless situation, as indeed he is. In the past, I used to be able to share and discuss problems with him, and if he couldn't help solve them, then at least we would work out a strategy, a way forward ...... That is not possible any longer, and that's why, every now and again, I feel trapped by so many things I cannot change: the compulsive behaviour, the soiled clothes, the spoilt and broken things in the house, the lack of comprehension, the crushing responsibility. Yesterday, even the rustling of his incontinence pants made me feel on edge.
    Two things help me snap out of my mysery: I remind myself that it is much worse for my husband - he has absolutely no way out of this at all, he is angry because he doesn't want to be so dependent (when I know I am getting cross I walk away, have a good old screaming fit out of earshot, and walk back into the room a few minutes later for a fresh start with a smile and a clam voice, this usually 'does the trick' for both of us) ......... and the other thing is his smile when he feels relaxed and comfortable!

    Sorry, I am not trying to 'preach', just to say that this IS difficult, and I am sure you will find the strength to go on, go back, again and again, because you know that your Mum needs you.

    Best wishes!!
     
  10. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Susie,
    I have found that just as the person afflicted with Alzheimers goes through its stages, we care takers do too. The feelings I had when my Mom was diagnosed are different than what I'm going through now. We advance and progress through this illness with them with a whole set of emotions that constantly ebb and flow. When they do something new in their illness, we have our emotions and adapt. Everyones level of what they can bare and what is tolerable to them is different. There are days I dearly love my Mom, AD and all. And days I just can't stand it and stay away. It is how I regroup and carry on for the next day. Can't say I've been repulsed but then there is always tomorrow.
    Just do the "right" thing and do the best you can. And like others have said, hate the illness for it is not by their choice that they have it.
    Debbie
     
  11. susieb

    susieb Registered User

    Apr 16, 2006
    26
    Many thanks, that's really helpful

    quote from debbie
    "I have found that just as the person afflicted with Alzheimers goes through its stages, we care takers do too. The feelings I had when my Mom was diagnosed are different than what I'm going through now. We advance and progress through this illness with them with a whole set of emotions that constantly ebb and flow. When they do something new in their illness, we have our emotions and adapt. Everyones level of what they can bare and what is tolerable to them is different. There are days I dearly love my Mom, AD and all. And days I just can't stand it and stay away."

    This explains what I meant too, thank you

    Quote from Jarnee
    "I know it's hard, SusieB, but you must do as much as is right for you and your mum."

    Thank you too
     
  12. sophia

    sophia Registered User

    Apr 20, 2006
    21
    i know what you mean

    Hi Susie
    Yes I have felt and still do feel repulsed at times, and have had days when I have stayed away, sometimes nearly a week, and I have felt more able to cope when I've chosen to go again. I think a lot of the times when I stayed away were because I couldn't take in how much Mum had changed and was continuing to change. Also she found me helping her very annoying at some stages and it frustrated her. Even though I thought I was the epitome of discretion, tact and thoughfulness!! I often felt if I had a clear role, if I went , spent time, did stuff her, and then Mum appreciated what I'd done or said and found it useful, I would go not matter how repulsive the situation! Sometimes I want her to acknowledge the big sacrifices I make for her. I would have felt guilty once for admitting that! But this site and TP members are helping me realise there's no need to feel guilty and it's pointless. Mostly now, I have sort of acclimatised to how she is at this stage right now, and feel I'm coping better than I was. I know this will change as she , and her condition changes , I think it is up and downs, peaks and troughs, denial, struggling with reality and readjusting, in this disease. And mostly I see her as terribly vulnerable even if she is difficult towards me. I feel angry at her when she is very awkward and 'makes' me feel wretched. Like when she (as she often does) asks why I make her have these horrible carers in! (she is sure she never forgets to eat drink or take her tablets!) I know I feel angry with her because I want to please her really cos she is still my mum, and then I realise I can't always please her and that now I'm an adult and she is vulnerable, I have to do what's best for her even if she doesn't like it. But that's on days when I feel in control and function well! The days I don't I'll choose to stay away as much as I can safely, and hence having others in to care is crucial. I expect even when mum's in the annexe in the same house as me, which will be soon, I'll have days i'd rather not see her or not for long. I certainly curtail visits now if I feel upset or angry or repulsed! I can only do what I can do, I know i'm just human. It's not an easy thing at all to deal with and even adjusting is a moving target when things don't stay the same ! Be kind to yourself too. Take time out and use that to replenish your energy if you can. Treat yourself to little things you love - you really deserve that. Accept that some days it feels awful and other days have just got to be better. It's such hard work. Reward yourself! x
     
  13. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear susieb, thank you for posting and posing this question.

    It makes other carers feel they ARE NOT ALONE WHEN QUESTIONING THEIR ROLES.

    Regards,
     
  14. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,112
    Toronto, Canada
    Hi Susieb,

    I have gone through various emotions as the disease progresses and my mother slowly disappears. When she's been in a nasty phase, I have stayed away for a week, simply because I have shouted at her. It does her no good and it certainly does me even less good. At least my mother forgets I yelled at her but I don't. And as Sophia says, it helps me deal with the situation again for a time.

    Repulsion - I guess yes. I find I hug and kiss her less. We used to be very physically affectionate. But I don't want to touch her. I realize that touch is very important & I try to hold her hand etc. But I am consciously doing so, as part of the job of caring for her, not spontaneously. And this with her in a nursing home so I haven't all the problems that most of you do.

    She is not my mother anymore, the disease has progressed to the point that there are hardly ever any flashes of my mother. It does hit me now and again & I get weepy. Mostly I'm in a working, problem-solving mode - doing her laundry, talking to the staff, walking around with her, changing her, helping her wash up when she's agreeable. Haven't quite yet got to the washing her genitals for her - it's still a no-go zone for me.

    When I was in my early 20s, I once told my mother that she couldn't die before me, because I couldn't bear the thought of living without her. That has changed also. I'm not looking forward to her death at all, I know I will be devastated & guilt-ridden, but it's not like it was.

    I've been on the ghost ship Alzheimer's for over 5 years now. Somehow, we make it through. It really is hardest the first couple of years - well, so far for me.

    Do what you can, take breaks when you need them, you will get through.

    Joanne
     
  15. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Thanks, Susieb

    Susie

    as others have said or hinted, it's a valuable addition to the threads here for us to talk about this. A different facet of the Guilt Monster, perhaps? Certainly something most of us face from time to time in varying degrees. I'd only have described as repulsion once or twice, but there have been many times when I simply can't face dealing with the situation that day - it's all got too much, there are other problems (the rest of life doesn't go away, even if it feels like it has sometimes), or I simply don't feel able to cope with it. Like any human being, occasionally I need to be able to say "No" so that I recoup and recharge (something I probably don't do often enough, in my own case).

    Like Nutty Nan said, I certainly feel trapped - and angry - from time to time too. It's a selfish viewpoint at those times - I didn't do anything to create this situation, nor am I the one with the problem, but I'm stuck with it come what may, coping with whole aspects of my Mum's life for her. I've come to the conclusion I'll have to accept being angry sometimes - I *am* losing parts of my life to her condition, so it's only natural I should be angry. Your repulsion is no different - it will happen. The thing to try to do is to feel ok about feeling it, if that makes any sense.

    I've said it countless ties before, but TP has been a godsend in the dark moment: knowing there are others in similar boats who will listen and understand, even if they don't have some magic solution really does make you feel a bit less helpless.
     
  16. sallyd

    sallyd Registered User

    May 2, 2006
    1
    and helplessness

    I'm a new member here and really appreciated reading all the mail. My mother refuses to believe there is anything wrong with her and will not accept any help. I do feel repulsed by the mess she creates around her but if I even try to do some washing up she becomes so abusive towards me its easier to give up. She won't accept home help, and won't even go to her GP. We have not even had any professional dignosis yet as she refuses to see anyone - any tips on how we can move forward?
     
  17. Áine

    Áine Registered User

    Hi Sallyd, welcome :)

    Maybe, depending on how bad a mess your mum is in and how safe she is, you CAN'T actually move forward at present. Seems to me (for better or for worse) there are times on this journey where we just have to stand still and wait for the next thing to happen. I'm not saying that's where you're at, but it's a possibility :(

    best wishes

    Áine
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Canadian Joanne
    Yes someone said a Similar thing to me tonight at mum care home , he said he will crack after his dad death we look at each other for a moment all I answered back is when he said yes I know I will get up & over it , I said yes your get back up but you never get over it you just learn to live with it .
     
  19. Hugh

    Hugh Registered User

    Sep 23, 2005
    25
    You are doing very well

    Hi Susie, AD is in my mind (Mum has it and is in a nursing home) a living hell for the sufferer and the family members and carers. It is as simple as that. However to make some inroads into dealing with the devil (who else but such a being could inflict such suffering as AD on a person and their family) the remedy I have been shown is unconditional love - for the sufferer. For us who have the misery - and I believe I understand what you mean by repulsion, which is utter disgust at the evil fate which has befallen your Mum - to watch our precious Mums disintigrate in front of our and their very own eyes brings out the most powerful feelings inside us . Someone once said (I think!!) "Love conquers all". Well I am not totally confinced but all I know is that in my time of grief for my Mum and my anger at the unfair deal she has been dealt I have found myself with a very much more powerful feeling of love for my Mum than I have ever had before - and I have loved her desperately all her life. Remember to love yourself as much and in that way I hope you may be able to get some healing for the pain and wounding which you are suffereing right now. As you have discovered on TP you are not alone by any means so keep in contact with us fellow sufferers as and when it helps you to do so. Love your Mum and yourself to bits - you are doing so well. Hope this helps. Lots of hugs, Hugh ;)
     

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