1. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    I visited Mum at the weekend, she has the second urine infection in a month and has eaten very little over the last month or so, but remains relaxed and smiley most of the time.

    Since the galantamine was withdrawn last autumn, she has lost most of her speech and seems to understand little of what is said to her, but is mobile, though slower than she was.

    Her main carer asked me to try to get her to take her medication as she is refusing that too, I eventually got her to take the liquid antibiotic, but it took ages. I took the medication pot and glass into the office and her carer said "don't be surprised if she gives up soon." I said I hoped she would and immediately realised what a hard and awful thing that was to say out loud.

    The carer was not phased, but said she could totally understand my feelings,she has been in the situation herself.

    I love my Mum to bits, but don't want her go on getting more frail with every week that passes, she deserves better than that. I don't want her to die either, but there are no more options left are there?

    How I hate this disease, it gets the sufferer and the loved ones alike.

  2. Áine

    Áine Registered User

    Are you hard hearted? ....... sounds like you're quite the opposite to me Kathleen. You clearly care about the distress your mum is in and want her to be free of it. That sounds honest, real and unselfish to me. It's a horrid place to be though. I think you're so right that it gets the sufferers and the loved ones alike.

    take care

  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    No your not hard hearted (((((HUGS)))) Kathleen
  4. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Kathleen,
    Can't say anything, other than we are at the same place.
    With love,
  5. connie

    connie Registered User

    Mar 7, 2004
    Kathleen, if you are 'hard hearted' then so are a lot of people, me included.

    No answers, just sending good wishes, Connie
  6. SallyB

    SallyB Registered User

    May 7, 2005
    Kathleen, I must be Hard Hearted too. I too feel awful when I voice similar thoughts.

    It is the most wicked illness.

  7. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Thank you for your replies, I think my problem with this is that we went through a similar process with Dad after his stroke.

    He was severely affected and had no hope of recovery from day one, we knew he would die and that he was in torment mentally as he was sometimes aware that he could not move from the neck down or speak, he could blink yes or no though.
    We spent 13 days with him, talking and comforting him as best we could until another stroke took him one morning very peacefully. I coped with that as best I could knowing it would not be long until his suffering was over, while desperately hoping a miracle would happen and we could have him back with us again.

    With Mum, however, she seems unaware of anything being wrong and lives in the moment only, no sense of past or future and we can't reach her in the same way we could with Dad. There can be no miracle for her and without Dad by her side always looks so lonely, even though I don't think she feels anything of the sort.

    I suppose I am just so very tired of this long slow goodbye and for that I feel selfish and guilty, I have had enough of this illness, not of Mum. I love her so much as I did my Dad and just want them back together, where they belong, then their circle will be complete.

    Thanks for listening.

  8. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Kathleen,
    Yes, on another thread they are talking about the chance to say goodbye, rather than a quick death, but how many years do you need? Don't you just yearn to be able to get on with life normally, without the thought of your mum in the back of your head? Feeling guilty because she is sitting there on her own, and you are daring to enjoy yourself. But you don't want her to die because she is your mum and you love her and don't want to say that final goodbye, when you will never be able to hold her or kiss her or tell her you love her again. Again I can't say anything that will help, other than that I am standing alongside you.
    Take care
  9. jakky

    jakky Registered User

    Jan 30, 2006
    Hi Kathleen

    Ditto all comments and.......definitely far from hard hearted,
    try not to beat yourself up, you deserve more than that...

    thinking of ya in these tough times

    take care and keep ya chin up

  10. rummy

    rummy Registered User

    Jul 15, 2005
    Kathleen, you are not selfish or guilty and this is something I am feeling too. My Mom isn't as far along as yours but I pray she doesn't go to the bitter end of this disease.
    I think wishing them out of this disease is the most loving and generous thing one can do. We wouldn't want anyone to linger that had terminal cancer or any other horrible disease so why is AD any different. We can ask God for healing but sometimes healing takes place in the next life, not this one.
    The day my Mom dies I will be devastated but I will also be overjoyed knowing that she is living with an intact mind and soul again. There will be an empty place in my life that she used to fill but it is temporary, I will see her again.
    Hugs, Debbie
    ps, hope I haven't gotten overly religious on you here, it is just how I believe.
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    Everyone's said the things I was thinking, so I'll just add my name to the petition for a merciful ending to the hell of advanced dementia.

    No, you're not hard-hearted at all, and nor is her carer.

    Best wishes
  12. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Kathleen
    you are not hard hearted,I too have all those same feelings.
    Not suprising after ten years is it ?
  13. soozieann

    soozieann Registered User

    Dec 7, 2005
    Re: Am I hard hearted?

    No, No, No Kathleen - you certainly are not hard hearted - you love your mother very much.

    I'd like to agree with what everyone has said. Until a month ago I was in the same place as you. Mum was in my head when I went to sleep [every time I woke up in the night also- I didn't sleep well until she had passed awaey] and of course she was there when I woke up.

    She was also hit by another UTI, which are such horrible things- I was praying for her to pass away, to be free - and yes for me to be free too.

    Take very, very good care of yourself, and I pray both yours and your mother's suffering is over very soon.

    Sending a hug,
  14. dmc

    dmc Registered User

    Mar 13, 2006
    Hi kathleen

    my mums dementia is very progressive and for that im gratefull, am i being hardhearted?
    How all you carers out there cope with it for years i dont know, they diagnosed mum in february and they said it would be 12 months seeing what she's going through every day even thats too long.

    I dont want to lose my mum but the dementia is taking her anyway!
    I certainly dont think your being hardhearted, quite the opposite in fact, to want your loved ones not to suffer is not hardhearted.

    best wishes
  15. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Thanks for all your replies, they have made me feel better about myself.

    That is the blessing of this forum, we can be honest and find kindred spirits among others here.

    I am going to make a real effort today for the sake of my youngest, she is 7 and has to put up with a lot of things that no 7 year old should worry about, we are off to the woods with the dog and then the park, hopefully not getting too wet!!

    I think with the holiday from school, I have too much time to think and I find that is my main problem, I am more comfortable trying to keep some sense of normality going, but at times, Mum is foremost in my mind and that gets to me.

    If anyone ever invents a cloning machine, could I place an order for one of me to be with Mum 24/7 and then I could carry on much more easily.

    Thanks again, the black cloud is lifting,

  16. dmc

    dmc Registered User

    Mar 13, 2006
    hi kathleen

    hope you and your family have a lovely day you deserve it, glad your cloud is lifting:)
  17. Wetherby

    Wetherby Registered User

    Apr 12, 2006
    I am wishing for the same

    Hi Kathleen
    My mother is in the late stages of Alzheimers and after a recent long stay in hospital she is coming home today. The hospital wanted her to go into care but my dad who is her primary carer would hear none of it, therefore she is coming home with care coming in to help three times per day. This may seem optimistic but I feel far from optimistic, my only wish is that my mother would die.

    I hope that people can understand this. Like you I love my mother dearly and would never wish for this if the person I knew was still with us. My Mum used to be beautifully dressed and would always smell divine. The last time I sat with her and held her hand she smelt like an old lady that I did not know anymore. The overwhelming feeling of guilt is the hardest thing to bear. I often worry that I will not remember my Mum as she used to be and will only remember the terrible times we are living through now. I feel in my heart that my mother would not have wanted to come to this, however, I also know that my Dad and sisters would have her with us whatever she has become. We all deal with our feelings in different ways and for 10 people that think one way there are 10 that think the way we feel.

    I hope you find a way to handle your feelings but please do not feel that you are a bad person, as someone else on the forum said, there are thousands of us that are "bad" if that is the case.

    Best wishes.
  18. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello all

    I had a lovely walk this morning and we all came back covered in mud, but feeling so much better for it, the rain held off too which was a bonus. Spring flowers are blooming and the birds were singing away.

    My lovely husband came home from work early so I could visit Mum, she was wandering about looking so lost and old, she is only 74 for goodness sake.
    She got a bit dizzy and sat on the stairs, probably due to lack of food and the carer and I sat with her while she had a cup of milky sweet tea and she perked up again.

    Back in the lounge we were discussing birthdays, she knew hers is 25th May, I asked her how old she was going to be, 25 she said confidently, then I asked how old she would like to be and she said "I don't want to be here any more, I'm so weary."

    That makes me feel she wants out too, so I feel better about my own thoughts and have decided I am not a bad person, just a very frightened one who is not sure how to cope with whatever lies ahead for Mum. As Norman says I will take it day by day and with my family and all of you, I will cope.

  19. connie

    connie Registered User

    Mar 7, 2004
    Hi Kathleen,

    Lionel saw the consultant again today. He told him that he was tired of living with this illness, of not knowing the words to say, and not remembering what he had started to say. This took about 15 mins to piece together.

    Then he burst into tears. He sobbed that "sometimes I feel I could murder Connie, as she is cruel to me and has taken away all my money", but he realises deep down, and on the good days, that this is not so.

    How truely awful to be trapped in his world. I have no answers. This afternoon he attempted to help make me a cup of tea, first time in six months.

    Tonight he has said that I am a monster who is nagging him to die. Tonight has been just horrible, and I want to shout at him that I am doing my very best, but what good would that do.

    I just have to live in his tormented world, but at least it is my choice to stay, he has no choice. I am exhausted, he has no mobility at all tonight, and it drags you down having to lift unresponsive limbs, to wash and dry, and make ready for bed.

    Sorry, I just needed to rant. Think I will now fix myself a stiff drink.
    Take care all, Connie
  20. dmc

    dmc Registered User

    Mar 13, 2006
    Hiya connie

    just wanted to send you a {{{{{big hug}}}}}

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