1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

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. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I am just so grateful that my feelings are normal. Unless someone has looked after someone with dementia it's nearly impossible to explain how hard it can be.

    Some days I just feel like I'm continuously grieving for the bits of my mum that have now gone.
     
  2. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,293
    SW London
    Several years ago, before my mother had to go into a care home (and we were absolutely dreading having to do it) I had a colleague whose elderly mother had a lot of severe health problems, but no dementia. We both spent a lot of time with them, 'sleepovers' at least once a week, etc.

    One day she came to work very late - her mother had been rushed to hospital in the night and had died soon afterwards. And my very first thought was, Lucky mum, and lucky you.
    I did tell her some time later - I knew her very well and knew she would not be shocked. We had each known what the other, and our mothers, were going through. She was glad her mother was released from it at last.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,636
    Female
    London
    It isn't that I don't feel for people with cancer, I do. My own mother had breast cancer and I am very happy she came through it.

    It's the fact that there isn't much that can be done that's so bad about dementia. That it changes a person's personality. That not more is done in terms of help and support, that there is still a stigma attached and the condition not very much understood by people. That help comes under social care which means many people lose all their savings. That it's all so unfair!
     
  4. flossielime

    flossielime Registered User

    May 8, 2014
    201
    I totally agree. The long slow goodbye of dementia is horrible. I dont for a minute think cancer would be much fun either but I do think for older people it is probably a more dignified death.
     
  5. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    515
    Scotland
    Linbrusco you mention that your mum has CLL - OH was diagnosed with CLL in 1999 and our GP told us the same as yours did. Many ups and downs and of course regular blood tests for many years.

    And then vascular dementia bringing ongoing bereavement as bit by bit OH loses most of what made him what he used to be and has swallowed up all that we had hoped for in our older years. I am 74 and all that I do is centred around hubby's needs - I do not exist.

    I think the feelings expressed on this thread are so very common and perfectly logical
     
  6. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    I'm hearing you raggedy Anne....it's all too easy to tell someone not to whinge when their lives are ok. You whinge all you like....no one could understand unless they're in that situation!


    Sent from my iPhone using Talking Point
     
  7. lexy

    lexy Registered User

    Nov 24, 2013
    569
    #27 lexy, Feb 23, 2015
    Last edited: Apr 11, 2015
    deleted
     
  8. Reds

    Reds Registered User

    Sep 5, 2011
    540
    Hertfordshire
    Hi!

    I also have felt that if my husband had had been diagnosed with cancer the attitude and help will would have received would be completely different from him being diagnosed from Alzheimer's at the age of 58. He is now 62. We wouldn't have almost been told to get on without and see you in six months! We wouldn't have paid for prescriptions to begin with. People would have been more concerned and help would have been more forthcoming. I have lost two parents to cancer and its an awful thing but Alzheimer's is too!! Alzheimer's can affect a life for more years as well as other members of the family! It should be completely recognised and dealt with as much seriousness as any other terminal illness.

    Reds
     
  9. Isabella

    Isabella Registered User

    Jan 4, 2014
    106
    If my mum had been suffering from cancer the past two years I would still have had my mum. I would have had these past two years to spend with her. She's alive but she's gone anyway. I often wonder how I'll feel when it's over and I really don't know. She's been gone so long it is sometimes difficult to remember her the way she used to be.
     
  10. Dunkers58

    Dunkers58 Registered User

    Nov 9, 2013
    65
    Hampshire
    Summer heather,

    You are not alone, I felt the same way last year when my FIL died 4 months after being diagnosed with bowel cancer, until the last 6 months of his life he had been active and enjoying life , at the time I said I wished the same could happen to my Mum. Losing our loved ones is always hard, but we all have to die of something, but as many of us know too well this horrible disease means we lose them twice .
     
  11. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    I agree with Beate, there does still seem to be a stigma attached to dementia. I hate the way my Mum is ending her life, she would be mortified if she could see herself. If she had breast cancer (not that I would wish it on her or on anyone else) her friends and relatives would be flocking to visit and support her. But she has dementia.

    Suppose they'll come to her funeral and I will have to be polite, but I really feel that is one "social event" I would rather miss.
     
  12. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,741
    Salford
    My big brother died from cancer, he was given a time scale of one to two years and it was beyond treatment. He had the time as he had mental capability and so could all the planning and he did to make sure his wife and daughter would be left for as well as he could, he had capacity until the end.
    There's really no point in playing "Top Trump" (a children's game) about which is worst?
    Dying isn't good so " better a fast death, than a slow protracted one" who knows,youe decide, form me it would be the quicker the better.
    K
     
  13. Katee

    Katee Registered User

    Sep 19, 2013
    16
    Female
    Glasgow
    I too have had these thoughts. My mother is totally unaware of her unreasonable demands on my 87-year-old father who can't say 'no'. She has become so egocentric and nothing is good enough. It's not time spent cooking, cleaning, etc but the person she has become. My father and I trail behind her. She has make both of us ill.
     
  14. opaline

    opaline Registered User

    Nov 13, 2014
    182
    Gigglemore, you can make her funeral private and then it's only people you invite that are there and if anyone questioned my choices I would tell them exactly why they weren't asked, x
     
  15. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    I feel the same,as you and many of us here do Summer Heather,I feel I lost my mum years ago,the woman,the mother,the friend and adviser I knew and loved and who loved me back with all her heart,has gone and I'm scared that the only memories I will have left of her will be the bad,because it's making me hate what she has become.
    Given a choice between cancer or dementia,I'd take cancer everytime,
    And euthanasia can't be made legal fast enough in the country IMO.
    I'm sick of the torment sufferers and their loved ones have to put up with because of Dementia. It's not life,it's a living hell.
     
  16. Stresshead

    Stresshead Registered User

    Sep 13, 2014
    96
    Thank God for a forum like this, just to know that the thoughts that whirl around my head aren't just me being a bad person but are how alot of us feel when dealing with this awful disease. I too wish that I could have a crystal ball and know just how long this is going to go on for. My 83 year old father has Alzheimers and and bladder cancer and every time we visit the cancer specialist I am secretly hoping to be told that actually is has spread and that it is just a matter of time.............how bad is that !!! It's not that I don't love my dad in fact it's the opposite I love him to bits but he would be appalled at how he has ended up and the huge impact it has had on mine and my husbands lives. He has been living with us now for over 2 years and it has completely taken over our lives to the point where I have had to give up work. On the odd occasion when people actually ask how things are their stock response is always 'well just put him in a home'.........if only it really was that easy to just make that decision. You're right about friends and family though as sadly most of them have been nowhere to be seen throughout this. I hope that they never find themselves in this position as I may be able to forgive but I will never forget.

    Sending love and strength to you all xx
     
  17. Vancouver

    Vancouver Registered User

    Feb 24, 2015
    6
    Hi ...you are not a horrible person...I feel the same way sometimes...my mum has dementia and is living with us...I am trying to get some help through the day. Sometimes I get angry and I miss my mum...she is there but hidden. My dad passed away 2007 from lung cancer...I live in scotland and my dad lived in Vancouver..I flew home 3 times that year and it was awful to see my dad so sick..but he was ok in the mind. I don't know...this is all new to me and I am struggling at times....but after reading some of the posts here I realise I am not alone....hope you are ok...
     
  18. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,741
    Salford
    I agree with bringing in euthanasia, however, I would only allow it for people who have the capacity to make the decision for themselves, given that there's a thread on here about people being diagnosed incorrectly (so the doctors get a bonus) I wouldn't be happy with people being diagnosed then someone else taking the decision for them, unless they had made it clear before diagnosis that this would be what they wanted to happen.
    K
     
  19. Padraig

    Padraig Registered User

    Dec 10, 2009
    1,039
    Hereford
    Why pick on cancer? Reading all these comments on cancer I find very depressing. Are any of you living with it? There are many times I wish I would die when the pain becomes unbearable. If I were living with Alzheimer's the last thing I'd like to hear or read about is how it is the worst ever illness to have. Is it any wonder so many people live in denial? What a bleak and fearful future!

    On reflection I'm pleased that I was not on the internet during the years I cared for my wife. For a start, I could not have afforded to spend valuable time away from all that it entails, caring for my wife 24/7, on my own year on year. Why did I come on this site? I thought I might be of some positive help, by sharing my experiences. At least I did help some people by giving away free both our wheelchair, commode and other items, to people in need after my wife passed.

    As for support for cancer patients, I still haven't found any. If I were to go through it all again I'm not sure I would have accepted the operation. Two weeks in intensive care, then five weeks in hospital. I was sent home to live on my own with no support, but there's no point complaining. It's the way things are and I make the best of it.

    Yes there are things a lot worse than cancer and Alzheimer's, at least for me. The worst so far, was to suddenly lose a teenage daughter. There one moment: knocked down and killed the next. At least with Alzheimer's I was granted the time and opportunity to provide the best possible comfort, love and reassurance all the way to the most important person to enter my life.

    I can't comment on the loss of a Mum, Dad, Grandparent, brother or sister, never knew them. With my wife she gave me a lifetime of rich sweet memories to last the remainder of my life.
    This post may not go down well, if that's the case I've nothing more to write.
     
  20. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Hi Padraig,
    Your post is very thought provoking and too bad if it doesn't go down well.
    Each and everyone of us on TP have a different experience and perspective. You looked after your wife, I'm looking after my dad. I also looked after my mother (lung cancer - horrid pain). I have two older siblings - no help whatsoever. I am so sorry to hear of your teenage daughter, that is surely one of the most devastating things to experience in life.
    My own experience of my mothers cancer is that as soon as she was diagnosed, professionals were literally throwing themselves at us. It was almost too intrusive.
    With my dads diagnosis, I feel isolated. There is no-one else but me. I can't reason with dad, I could with my mother. If my mother was up during the night, I could give her oramorph and she would settle. If dads up, I'm up because dementia knows no time and he will pull things out of cupboards. Last week he got a kitchen knife and managed to take one of the screws on the front door off! He used to be in the building trade and not having a screwdriver wouldn't put him off! For me the burden of this illness is on the carer - me. There is a lot of moral and ethical considerations and guilt. I could put my dad in a home and go off and live my life, but right now I couldn't live with myself. At some point when double incontinence and immobility strike I may have to like so many others here on TP. When I reach that point I will be on here looking for advice, guidance and support because I know for sure that my siblings won't help me. I'd be a total stress bucket without TP as no-one else seems to have any inkling of understanding at all
    Take care x
     

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