1. lisaw

    lisaw Registered User

    Nov 22, 2004
    Hi I am new to the board. My mum is 57 and has had AD for 11 years now, I was 14 when the symptoms first started. She is in the what I would imagine is the very late stages of AD now. I moved to England from the caribbean because it was time to put her in a home and I could not cope with the guilt I felt. I have been bottling everything up for the last 3 years now, I try talking about it but just end up in floods of tears where I just end up crying and not actually talking. I visit every year, but I still feel guilty about what happened in the early years of her having AD before it was diagnosed. In the early days I remember being embarrassed when she would ask my friends the same questions over and over, possibly only 30 seconds in between, and I feel guilty for losing my patience with her when she could not follow simple instructions. I feel angry and cheated for what has happened to her, I feel angry for my mum being dragged away from me. I feel sorry for my dad being lonely for the rest of his life without companionship. How do you deal with all this? People keep saying that you should talk about it, but I end up crying until I make myself physically sick. Does anyone know how?
  2. Katy44

    Katy44 Registered User

    Sep 14, 2004
    lisaw, you will get many more responses from more experienced people here, but I wanted to say that I am thinking of you after reading your post (I realise how little that helps!) You have gone through so much from being so young.
    Whenever you feel like this, please come and post here, or send a private message, or just get someone to listen. Are you an only child? As far as I know, and I'm certainly one of them everyone gets frustrated and angry with people with AD. It's not nice but then neither is the disease. If you didn't care, you wouldn't be here - it's because you care so much that you feel so guilty.
    Well, I'm sure my endless cliches have helped!
  3. Anne54

    Anne54 Registered User

    Sep 16, 2004
    Hello Lisaw

    You have to forgive yourself; it’s the only way to go on with your life, as you should at your age. You were so young when it all started people twice or even three times your age often make more of a mess of this situation.
    My husband was 48 when he lost his job due to Alzheimer’s, by that point he had changed so much from the man I married that I had decided to leave him when the children had finished school, I did not realise that he was even ill. Now I try to remember the good times we had, and look after him as best I can. Try and find someone that you can talk to, or carry on posting you will get lots of help here.

  4. Chesca

    Chesca Guest

    Dear Lisa

    Hello, you are among friends here and there's a lot to be said for the benefits of a trouble shared. So this is where you come when you are overwhelmed with feelings of guilt, grief and deep sadness - we won't, sadly, be able to cure it, but together we just might help to lessen the load a little.

    Stop blaming yourself for things that were out of your control, you didn't have a crystal ball and I bet it was quite some time before diagnosis. Would it be any comfort if I told you that none of us know what is happening to any of our loved ones when the worst signs of AD start to manifest themselves in earnest. We have all got angry at some times because at first we just think our family members are setting out to be deliberately obtuse - it's out of character so we are bound not to be comfortable with it. As for friends, you might just find that as time has progressed they have seen the problem for themselves, and anyway you cannot be responsible for their feelings in this case. Mental illness, and that is what we are dealing with here, is never comfortable to be around, although, yes, sometimes people could be a little kinder.

    I have a lovely Mum, still, although with AD, and I remember the times of trying to reason with her (not realising I was trying to reason with the unreasonable) and feel guilty about so many things I might have handled better. But I didn't know, any more than you did and Mum's AD appeared a lot later in her life when you would have thought I would have known better. The one great (perverse) consolation of AD is that you can bet your sweet bippy your Mum won't remember those times but she will be familiar with your love, the love you so obviously have for her and your Dad. So could it be the right time to take that big stick you keep beating yourself with and break it in two and out with the rubbish? You deserve a little kindess to yourself.

    Although you can't be there as much as you may want to be, you sound to me as though you are keeping contact and if Dad has your support, even though from afar, it will be a great consolation to him. Does he have a support network where he is? If he does he will be guided to finding an outlet from the stresses and sadnesses he must be feeling. Remember, you cannot forecast the future any more than you can alter the past but today you can do the best you can. Perhaps you have started here.

    So, dry your eyes, Lisaw..........should I pass the Kleenex? I'm crying as I type this - see, you never really stop, a little memory here or there, break out in fresh places but don't bottle it up, you'll explode. Allow yourself the tears, be brave but don't be too hard on yourself when you are not - if you didn't feel so, you wouldn't love, and after all that is the all important ingredient.

    Lots of love and kind wishes
  5. lisaw

    lisaw Registered User

    Nov 22, 2004
    thank you

    Thank you so much for your kind responses, it is really weird (but comforting) to hear from people who have been through it and are going through it. I guess it never goes away really, the hurt and pain. Every post on this website has made me cry but it is less painful somehow knowing that you feel what I feel. My dad sees no life after my mum. My brother (only sibling) has chosen to live in denial I think. He does not talk about mum, his works literally not even quarter of a mile from her nursing home but has not visited for more than 18 months, but I know he thinks about her, he just cannot cope with seeing her.
    Thank you again for your help and kind words.
  6. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I wouldn't feel badly about shedding tears,they say big boys don't cry,they do you know ,I do, often.
    I cry for the beautiful wife who after 7 years of AD is only with me in flashes now, and they get less frequent.
    I look back at the memories that I have and I guess your Dad will do the same,we have too because there is no future for us.and we only have memories
    I feel guilty when I loose patience with her,the consolation is that they have forgotten very quickly about the whole episode.
    Our young Son came to see us on Sunday and his feelings are exactly the same as yours angry,cheated and very bitter.
    Do talk about it,come back to the board whenever you feel the need,one of us will be here for you
    Very best wishes
  7. Chesca

    Chesca Guest

    #7 Chesca, Nov 24, 2004
    Last edited by a moderator: Nov 24, 2004
    Dear Norman

    The future will take care of itself, day by day - who taught me that I wonder?

    If the future will be our memories that is a consolation albeit small, and I'm sure you have some fantastic memories of you and Peg. She's still there, loving you loving her, even if sometimes it's very well disguised. As I'm typing, I'm looking at a wonderful photograph of Mum, taken in Germany in the days when she would travel on her own to my sister's, hands on hips, head thrown back in laughter at some unheard joke! Of all the photographs I have, this is the one I feel encapsulates her very essence. God! she was bloody lovely and I'll only ever be half the woman she was - but I would never have wanted to live a life without the experience of her. I have other photos of her frail and vulnerable which I can't bear to look at because that is only her shell and even these days, occasionally, some spark of her spirit will shine through and for that moment she is again the woman in the photograph.

    So, to the tutor from the pupil, remember: day by day - it's the best we've got, sadly.

    Thinking of you
  8. connie

    connie Registered User

    Mar 7, 2004
    Dear Lisaw, tell Dad that their is always life, after you have lost someone.
    When I lost my first husband, after 35 wonderful years, my vicar said to me: go out and show the world the girl (Len) married.
    It does work, and I know I will have to rely on that thought again whenever anything happens to my dear Lionel.
    I just feel blessed to have been loved in the first place. Connie
  9. Chesca

    Chesca Guest

    Connie, I think the girl Len married really is one hell of a girl and I'm sure he would have echoed the vicar's sentiments, all the while you saying you married one hell of a man. To settle the argument, did he suggest that you just may both together have been one hell of a formidable couple? Possible. And to think, without TP, I would never have met you and shared in that.
    Kind wishes

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