Dementia has made me rethink my stance on Cancer

Discussion in 'I care for a person with dementia' started by Summerheather, Feb 22, 2015.

  1. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Hi Kazza, thanks for replying to my post. I am so sorry to hear what you are going through. It scares me what may lay ahead. How in the heck do you cope?? There needs to be a lot more understanding and awareness of this disease. I wish that people would include my Mum in conversations, rather than talking to me, just because she often goes off topics and says "strange" things. I have trouble trying to encourage her to make new friends.

    We too are on our own. My sister has completely abandoned us too, I find that so selfish. I completely ignore her now, she's such an angry and bitter person. I did feel enormously stressed when Dad was dying because we were completely on our own looking after him. I suppose everyone's experience is different and I think that because it's been exactly 1 year and 1 week since my Dad passed away, I'm feeling quite emotional. I know that my Dad is safe and happy now. He was a good patient though, never complaining.

    All you want to do is just love and protect them. It's just so hard and yet we're only at the beginning! I really do feel for you, Kazza. There seems to be a lot of people who don't understand or who can't be bothered to help out. A lot of "ignore it and it will go away" attitude.xx
     
  2. Suspended

    Suspended Registered User

    Mar 8, 2015
    4
    You are not horrible

    My mum has been in mental decline for some years and last year we learned she has cancer ... I wish she understood what is happening and then no, I am glad she does not fully understand that some day she will not be able to eat or drink because the big 'C' has got her. Mum cries because she has insight (sometimes) and wants her life back... I cry because I have already lost her and because seeing her cry makes me cry. I do not think that dual diagnosis is any kinder but I do know that the prognosis of the big 'C' outstrips that of the big 'D'.

     
  3. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    Oh flowerpetals... You've already been through a lot with your dad :(

    My brother and his kids will get both barrels from me at some point, and mums siblings aren't blameless either, and not to mention my fabulous friends who have disappeared one by one.my mum worked hard to raise us and she was very good to my brothers kids and his b**** of a wife...sorry for sounding bitter...but I am


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  4. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Hi Summer Heather,

    I'm just finding my way around this forum. I don't think you are a horrible person at all. Watching your Mum go through Alzheimers is a terrible thing, my Mum was diagnosed in September last year and I've already noticed her slipping away bit by bit. It's cruel and nasty and I wish there was a medicine to at least put it in remission like many other diseases. It's exhausting and worrying and it takes so much out of you.

    I am envious of those who don't have worries and cares like we do. Those who moan and whinge at trivial things in their lives. I am jealous of that as I'm still relatively young and I feel that I should be enjoying life without worrying constantly about my Mum's needs. I have health problems myself but they have to be put on hold for now. It makes me feel selfish but that's human nature. I think we are entitled to feel selfish :)
     
  5. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Hi Kazza,

    Can you please add my sister to your list and anyone else you can think of! :D I don't think you are bitter, you have the right to feel angry about their selfishness. It feels so inhuman to me. I often wonder "How can you behave like this, to your own mother?" Even health professionals think if you are looking after your Mum, they just basically leave it up you and offer no help. I wish there was a Macmillan style nurse service for people with dementia and their carers. Lots of people seem to be left to get on with it themselves xx
     
  6. canary

    canary Registered User

    Feb 25, 2014
    11,111
    Female
    South coast
    Actually, there is - Admiral nurses. The bad news is that they are pretty thin on the ground. You could try looking to see if there are any in your area
    http://www.dementiauk.org/what-we-do/admiral-nurses/
     
  7. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Thanks Canary! I didn't know about this and will certainly look into it. You learn something new every day :)
     
  8. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    I didn't know about these guys either...I don't recall ever seeing any kind of publicity or fundraising for these, will look further into it, because even when my mum is gone and at peace, I want to try and help as much as I can even if at first it's just donating....if AD is hereditary then I'm in the firing line, it would be great if this valuable service could grow at least to where Macmillan are now


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  9. alison1981

    alison1981 Registered User

    Dec 13, 2013
    62
    Thank you for this post. I find myself thinking why my mum? She has 4 sisters and I do find myself thinking why her, why not one of my aunties? Not that I wish this on my cousins or anything but it is so hard and sometimes I wished my mum was out of her misery. I love it being at work, I'm just me for a few hours. I get an awful feeling when it's time to go home. I do feel horrible feeling like this.
     
  10. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    Alison, I think the same way... There were 6 boys and 3 girls in mums family and not only did I get the grumpiest, most spiteful and moodiesf out of the lot of them, she get Alzheimer's. Mum was difficult all of my life and now it's tenfold. Most of my cousins had pretty cool childhoods and now have great solid marriages, beautiful homes...and yes, I do think from time to time why mum, why me! But wouldn't wish it on them at the same time



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  11. janma221

    janma221 Registered User

    Apr 23, 2013
    284
    Powys
    Hi I was diagnosed with CLL in 2008 although my doctor said I was young to have this. Having watched my mother deteriorate with Alzheimers I would prefer for this form of Leukemia to eventually take me than to inflict any form of dementia on my children. Sounds awful but at least they would remember me as the person I am. No winners in this situation but we are all human
     
  12. alison1981

    alison1981 Registered User

    Dec 13, 2013
    62

    My mum was a great mum pre dementia. Slowly she has turned into an uncaring, nasty and judgemental woman until now I don't recognise her. She would be mortified if she could see how she treats me and my father. She hates my dad, she says that evil old man' and 'b' words about him. I know it's her condition but it doesn't stop the words from hurting when they come out.

    Before dementia I loved shopping with her but now if I take her shopping if we see an overweight person I have to try to distract her because she says GET ON A DIET you fat ....! She used to be a quiet woman and wouldn't have dreamed of saying anything like htat like she does now. I just say I'm so sorry she doesn't know what she is saying but she has dementia and so far the people have been understanding but one day I know we will meet someone who isn't kind.
     
  13. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    Aaaah alison, I'm sorry you have all this. Don't get me wrong, I do believe my mum loved me once, but when she gets the hump with you, she will do whatever it takes to hurt you. She did the same to my dad, and when he left home she started on my brother and then my brother left home I got it and have continued to get get it ever since, even my friends used to joke "but your mum doesn't like you". You have to laugh or else you cry.


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  14. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    It's a horrible, cruel disease. My Mum has said some pretty horrible stuff to me that she would never have said before AD, if she was here and not just this shell, she would be horrified.
     
  15. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,693
    And the worst of it is that no matter how much you tell yourself its the dementia, not her, it still hurts like hell :( I can believe the language and the hateful things that pour out of Mil sometimes, especially when they are directed at her son, my OH, not just me. I said the other day that if i had met her now, not known her before, she wouldn't be someone I could like - and yet for many years we were such good friends :( She has totally changed.
     
  16. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160

    And it's upsetting when she asks about her Mum, always her Mum and My Father who passed away 20 years ago. Every time I think my heart can't break anymore, I'm getting immune, something else happens and it breaks all over again. It sucks.
     
  17. stu100

    stu100 Registered User

    Feb 4, 2015
    70
    Birmingham
    I totally agree I have got a big family most oh em don't want to know thay just don't understand cos thay don't live with it the lack of understanding I just feel sometimes people don't want the know it gets to me sometimes
     
  18. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,291
    SW London
    This was what I found the most upsetting with my mother - her saying horrible things about my OH, my daughters and my sister. And on at least one occasion she reduced my normally very robust and jolly brother to tears over the vile things she said to him. He had always been the 'golden boy', too. It doesn't help a bit at the time to tell yourself they can't help it, it's the dementia. if anyone else ever said that to me, I used to feel like slapping them. You really do NOT need pious cliches at such times.
     
  19. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    It is the most upsetting part for me too,when my mum says vile things to me and my daughters,she really upset my 11yr old and that upset me,I said try not to take it personally,(need to heed my own advice sometimes!) but it's hard not to.
    When I told the visiting nurse who had come to check on mum the following morning,she did use that cliche,but i said something's can't be unsaid,but I have to process what she's said,how I feel and then I grit my teeth and get on with it.. I may have to get a t shirt printed 'it's not me it's my mothers dementia.. '
     
  20. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    This is the problem for us carers, because if you grit your teeth and put up with it you're psychologically becoming a victim or a martyr, which is bad for your own self-image. You are, essentially, allowing yourself to be bullied. It doesn't matter if you tell yourself 'It's the dementia.' The fact is that by 'colluding' with the dementia [keeping your lip buttoned] you are diminishing yourself. That's why it's so difficult for us, so draining. We have to try to remain ourselves - be upbeat and resourceful and dynamic in order to get things done for the demented one - and yet the things that are said by that person are casting us in a different mould.
     

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