1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    I will post my thoughts here in this section because not knowing how it feels to have an older member of the family with dementia I am not sure if the same feelings apply....they probably do, but I didn't want to assume. Neither is this post for those who feel that their loved one is simply slipping away but isn't aware of what is happening to them and all is blissful for the sufferer at least if not the carer. This is for those who feel like their loved one has been ripped away from the life they should of had, and who's loved one has at least at some stage been aware and didn't want this to happen to them. I think this is the case for most dementia sufferers old and young but I really didn't want to hear from people who don't feel that this disease is what us aussies call 'hard yakka', (hard work) telling me that its not really that bad at all.

    I was watching the TV the other day and on it was an American lady who's daughter had gone missing in Aruba in the first half of 2005. There was talk that she may have been raped, murdered, or even the possibility of sold into the sex slave trade. A horrible topic to bring up I know, and my heart goes out to the girl (who I share a first name with, so it kind of made it more personal) and her family and her mother, but there was something about her mother's grief that made me realise something and I thought I'd share it here on TP, to perhaps helps others understand something about the way they feel as well.

    Think about a mother in this situation and how she would feel. Think about this for a little while before you read on. Think about how she would feel when her daughter has been missing for almost a year, but no body has been found and there are all sorts of rumours of what might have happened to her, but no evidence. Think about how it must feel to have had this bright sparkling daughter full of potential, and for her to have suddenly been taken away with only fears to replace her.....Think about how this mother must feel, knowing that if she gives up the search, gives in, then there really is no hope for ever finding her daughter, and if her daughter is still alive and she gives up, then it will be her fault her daughter is never rescued....does any of this remind you of anything?

    Whilst watching this girl's mum, who looked so tired and worn out and almost at breaking point, I was thinking how terrible it must be for her, to try to carry on for so long looking for her daughter, to keep fighting everyday to stop everyone from forgetting about her daughter, to try to hold onto hope even though it appeared that the case was most likely hopeless. And it was then that I realised that that is what we do, you and I, every day of this damn disease!

    We look for our loved ones, a sign that they are still there, constantly we are searching, looking for a sign, a clue, we keep fighting everyday to not only make sure that our loved one isn't forgotten by society, or by their friends and other family members and even by us. Somedays we just want to stop caring, to be able to forget, to walk away (and I suspect this girl's mother also felt that way many a time) to wake up and realise it was all just a bad dream instead of the day to day reality of our lives. Holding onto hope, even though we know that in reality there is no hope is also a necessary thing, to keep us going. Sometimes we do it, simply because it feels like that to lose hope is to betray our loved one, its like giving up, while they are still alive. Sometimes also, maybe we don't really hold hope that our loved one will recover or a cure will be found (though its something I still do, despite knowing its not possible) but we hold hope at least that we will be able to help them in some way, or see the old them for a day. Holding onto hope is an integral yet exhausting part of all this.

    True, at least we know what is happening to our loved one in some way, although we really don't know what will happen next or how it will happen. And true at least we don't have to think of some disgusting horrible people doing horrible things to our loved one and we can't help them, couldn't help them, save them. But we do have to think of what this disease could do to our loved one next, how they might be feeling inside but are unable to tell us, how we can do very little but standby and watch while this disease torments them, and then well there is a little bit of worrying about what other people might do to them, when if you're in my situation there was some abuse going on prior to Dad moving into a home, and secondly there is always a worry about staff at nursing homes. Many of us spend a lot of time initially also wondering what caused this, could we have helped avoid it happening, had we known what caused it, could we have prevented it.

    Also like a victim of crime or a person who witnesses a crime, in some ways we lose that feeling of security, of feeling safe in this world, the 'it couldn't happen to me' cotton wool, blissful ignorance feeling.

    So anyway just wanted to point out to people for the next time you are thinking why am I so useless, why can't I cope, what is wrong with me I'm so weak, why do I just want to give up, want to cry, want to have someone else look after me. What you are going through IS EXTREMELY HARD, DIFFICULT, EMOTIONALLY TAXING and you have every right to feel like its all too much. You are an amazing person for simply lasting this long (even if its only a day after the diagnosis!).

    Give yourself a break. This is all hard enough without you needing to think badly of yourself for not feeling like you can cope. What would you think about someone in the same situation as the mother I talked about above? Wouldn't you forgive her if she gave up? Wouldn't you understand if she just wanted to cry and cry and cry? Forgive yourself, forgive yourself, forgive yourself. This situation although different, has I believe very similar levels of trauma. Or do others disagree, am I over dramatising the issue?
  2. Amy

    Amy Registered User

    Jan 4, 2006
    Sorry Nat,
    But I think that you need to read this for yourself, take it into yourself, it applies to you too
  3. connie

    connie Registered User

    Mar 7, 2004
    Thanks for your post Nat. So true, in so many cases.

    Agree with Amy, it applies to you too. Love, Connie
  4. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Amy thanks for your concerns, no doubt my 'Going crazy' post made u worried about me, but I am aware that my post applies to me too. Thats why the realisation blew me away the other day when I saw the TV show, there I was sitting watching thinking 'Oh you poor woman', then I started thinking, wow I am really empathising with her, not just sympathising but can almost feel like how she must feel and then tick, tick, tick the brain cogs turned and then it all came together for me and I realised why I understood!

    Thanks Connie for your words too.

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