RAMONJKD Registered User

    Nov 7, 2010
    #1 RAMONJKD, Nov 7, 2010
    Last edited by a moderator: Nov 7, 2010

    My mum is 59 and has advanced stages of Alzheimers. She was first diagnosed around 4 years ago. We managed to care for her at home for two years or so, during which she would visit day centres. We then had to have help through carers which would sit with her before and after the day centres before my Stepdad got home from work. We then had to make the difficult decission that she would need to have fulltime care in the form of a care home. We managed to find (care home name removed as per our T & Cs) in east Peckham which provided her with superb care for over a year, unfortunately as her condition worsened she had to be placed in a hospital so that she could be assessed and her medication could be altered. She has now moved into a unit for younger people in Hailsham.

    This is obviously a very brief description of the events over the past four very difficult and emotional years.
    The one thing that I have found upsetting is that this cruel disease seems to have alienated my mum from a lot of her friends and even family. I have recently lost a close family member to Cancer and people rallied around to see her and spend time with her as the illness progressed and I have found the complete opposite with my mum.

    Sorry for the first post rant but I am interested to hear other peoples experiences (both sufferers & family members). I have lived this illness through my mum for a good few years now and only recently have I come to terms wiht it enough that I want to talk about and share advice & experiences as it is such a major part of my life.
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I can understand your anger. Xx
  3. elaine n

    elaine n Registered User

    Jun 1, 2010
    west country uk
    The sad fact about this awful disease is that people don't seem to know how to deal with it. I have a wonderful friend who seems to feel embarassed when she sees my husband but when he had cancer she was great. Keep posting, there's lots of support on TP we're all in the same boat and all understand xxxxxxelaine
  4. geordie

    geordie Registered User

    May 11, 2010
    my mother is in a different age group to yours -but I can strongly empathise with your experience - extended family have very definately opted out of our situation - as have a number of neighbours and people who we thought of as friends - maybe people just don't know how to react and it's easier to avoid???

    RAMONJKD Registered User

    Nov 7, 2010
    I think that a lot of people tend not to appreciate the seriousness of the illness until its too late. I do think the main problem is that people just don't know how to react to someone. I found it difficult in the early days when mum would recognise people that she knew when we were out walking so would go and talk to them, but would not be able to hold a conversation properly and would often leave them staring at me confused, and me having to just pop back to them once we had walked off to explain!
  6. elaine n

    elaine n Registered User

    Jun 1, 2010
    west country uk
    When my husband was diagnosed I told everyone I could what the problem was - we live in a small village so word soon got round! and generally found it was the best thing I could have done, once people understood they found it easier to be with him, of course ther eare always going to be some who feel uncomfortable with it but that's their problem isn't it?
  7. Necion

    Necion Registered User

    Hi Ramonjkd, I know exactly what you mean, there does seem to be a fear of the unknown.
    People can understand pain, empathise with what it is like to have part of your body really hurt, but this horrible illness is a totally different thing, isn't it.
    My husband John (58)is currently in the test process, lots of signs but no diagnosis as yet whether it is a dementia related illness or not. I have found that people who were previously very chatty with him, are holding back a bit on conversation. I feel like screaming HE'S ILL.....NOT STUPID!!!

    I'm a couple of years younger than your mum, and can well remember when people had the same reaction to cancer. The word was never said, referred to as 'the big 'c'.'

    I'm convinced that the only way around this is raising awareness.
    Dementia has no thought whatsoever for anyone, it could be any of us, old or young, rich or poor, nice or nasty.

    You are so right about sharing experiences.
    Dementia is no more to be ashamed of than any other illness, the person is still there even though they become less able to communicate and look after themselves. They are still human beings.

    I have only told close family and trusted friends about this side of Johns' health problems, just incase there is no diagnosis, in which case we're back to square one. Either way, I take this experience to realise that early onset/dementia needs to be talked about, prepared for, recognised and accepted. How else are we going to get the research to a standard that can provide some sort of relief to the devastation this illness causes to everyone in its path.

    I admire you for sharing your story, and your desire to bring this into the open. I really don't think people mean to avoid the dementia sufferers, but rather that they feel unable to confidently play any important part in their life.
    Don't hesitate to bring this to their attention, even if mum can't communicate like they remember she did in the past, they need to understand that she's still the same person, and needs love and consideration. It may surprise you how many would actually pitch in with visiting if they understood the importance of this.

    Keep up the good work, I'm sure mum would be proud of you.
    Love, Necion. x

    RAMONJKD Registered User

    Nov 7, 2010
    Thanks for all for the Replies and your kind words. I agree that there seems to be a lack of awareness of Alzheimers, especially in younger people. Although mum doesn't really recognise me as such, she does respond to my company and there are always slight glimmers of how she used to be. Even so I enjoy spending time with her as I would if she was still healthy. And I know that she would do the same for me in a similar situation. I also have a great admiration for anyone that works in this field as over the years I have had first hand experience of the different ways in which this cruel illness affects people. Generally the more advanced sufferers that I have met and spent time with are kind, friendly and happy and I think it is good to be able to take comfort from that.
  9. louise@weinprop

    louise@weinprop Registered User

    May 12, 2005
    Hello Ramonjkd - I am in exactly the same situation with my husband aged 63. He was diagnosed 9 years ago and has been in a home for the last year. Friends and family who were constant visitors to our home now refuse to visit the Care Home because they want to "remember him as he was". I feel this statement is such a "Cop-out", what about what I need and what I am sure, somewhere in the back of his brain, he also needs.
    Anyhow I have just learned to accept it and carry on by myself, but I only hope that when his time comes all these "friends" don't rally around and expect me to be grateful.
    Keep well and Godbless.
  10. sad nell

    sad nell Registered User

    Ramonjkd. welcome to TP.I so hate the words, "we want to remember him as he was" and have had to bite my tongue so many times, this is said by a few very close friends, which shocked me, but others have been wonderful and visit and chat to him although he isnt able to respond. these people have more than made up for the others, I wonder if it is the feeling there but for the grace of God go I that keeps them away. In 6years of Trevs illness my sister has not once offered any practical help to either of us, just rung to tell me about her lovely holidays, does she think this actually helps, but I have grown a thick skin and I think we must to protect ourselves whilst caring for our loved ones suffering this cruel desease. TP has been my lifeline hope you reap its benefits too. Pam
  11. DianeG

    DianeG Registered User

    Oct 12, 2007
    I completely understand everything you say. My mum is 58 and in a care home with advanced AD. It's just me and dad that visit now. 'Too painful' for others so they say. All mums friends are long gone and extended family don't seem to care. it's been an eye opener for me and I trust very few in my life as a result.

    However, stick with it and you focus on doing what works for you. I recently made up a memories book with photos, tickets, wee stories etc in it for me and Dad to talk to mum about when we visit. It reminds us of fantastic times and gives us a focus. Mum's speech is limited to just a few words in total now so visits are tough.

    Focus on what you do have and sod those that have been and gone. I used to be angry about it but I'm all out of energy.

    Sending you a big hug - there's many more like us and we are all in this together.

    Take care.

  12. Paulineanne

    Paulineanne Registered User

    May 16, 2010
    Thank you so much for sharing your experience. I completely understand how you feel.
    Hopefully things will start to change soon!
    Take care

    RAMONJKD Registered User

    Nov 7, 2010
    It refreshing talking to people in similar situations, I only wish I had done so sooner really but its taken me a long time to come to terms with mums situation. Even now, a lot of my friends and work colleagues don't know much about my mums situation. Next year I am organising a charity ride from kent to cornwall as I feel now that i want to put something back into the people that have helped us, and of course to raise money and awareness.
  14. MrsP

    MrsP Registered User

    Mar 19, 2005
    Over the past two years my Dad must have had precisely 10 visitors made up of his ex-wife (my mum), my brother and me, my 2 children, an uncle and his partner, a cousin and 2 work friends. Everyone else (including his family) find it 'too difficult'. Bet they all turn up for the tea and cakes at his wake though (said with tongue in cheek, but you get my meaning)!!

  15. PostTenebrasLux

    PostTenebrasLux Registered User

    Mar 16, 2010
    London & Oxford
    I sent you a PM (private message) Ramon

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