1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    WARNING: This is quite a dark post so I don't recommend reading it, if you aren't feeling very strong at the moment, its a venting of pain, rage and all that is negative, and not at all constructive or helpful except perhaps for those who feel the same way and wanted the feeling outed instead of always boiling within. I also posted it because I think the rest of the world needs to know how bad this situation is and if I can give the words for people to express this to the 'outside world' then at least I am doing something a little bit useful.

    This situation drives me crazy!!!!

    Dad looked 'disgustingly' healthy today. What I mean by 'disgustingly' is that part of why i find it so hard to cope with this illness is that he looks so bloody normal at first glance, or if you didn't know what his situation was, but then if you keep looking you notice that his mouth doesn't close, you notice that when he walks he walks funny, leaning to one side, or lifting his feet in an exaggerated manner, walking into areas that he can't walk through and so on. If you get him on a bad day you will see a dribble of spit drop from his mouth, you'll notice his eyes don't really seem to focus properly and sometimes he yells apparently for no reason, or raises his hand to swipe something out of the way which you and I can't see.

    But.....when i looked at him today and looked past all the strange behaviours and mannerisms, I could see that he looked like any other 60 year old, in fact, he probably looks more like 55!

    I can't get over that! How can he look so good physically whilst his brain continues to shrink?? While he behaves like, ....well like a person with something wrong with his brain? I say 'disgustingly' also because his physical appearance freaks me out because it seems to suggest that this nightmare has a long way to go until it runs its course, I say 'disgustingly' because it is disgusting that a man should look so good but be a complete ruin on the inside of his head. It confounds and dismays me. And then there is the crazy side to it all where his good physical appearance makes me unable to let go of hope that he can keep battling, but then I think, what for? And then comes the pain of hoping for the hopeless. :(

    I say 'disgustingly' because its like some disgusting joke of nature, it makes me feel like some horrible torturer of a supreme being is playing with my father. He/she is saying to me look how I can make your Dad who on the outside looks completely normal behave like a madman, look at me pull the strings of this silly little puppet, look how I can make you cry just by waving his arms about, making him fall over, causing spit to flow out of his mouth, just when he almost had a word. Its....disgusting,... it makes my heart ache with pity for my father, it makes me angry and I feel helpless that I can't take the strings away from the control of the evil power. Its a nightmare. I feel like throwing up at the cruelty of it all. Why him, why us? Please can't anybody make this stop?

    Apologies for a very black post, as usual I am somewhat dislocated from the emotion that I just wrote, so don't be too concerned about my thoughts and feelings, but they are how I feel, deep down inside in a place that I lock away most of the time just to keep my own sanity. No doubt many on here also feel the same way.
  2. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Nat, I have felt all you're feeling in my time as a carer. There are some very black holes in a carer's mind and heart. There's no understanding this illness, it's cruel and yes it's effects are disgusting, I agree with you wholeheartedly.
    Wish I could say something to soothe you, but there are no words.
    Thinking of you.
  3. connie

    connie Registered User

    Mar 7, 2004
    Hi Nat, you could be talking about my dear Lionel. Yes he looks so healthy, and I echo your feelings. You have a better way with words than me. Take care, Connie
  4. Finnian

    Finnian Registered User

    Sep 26, 2005
    I've been through some of this too. On all the hospital assessments my husband "pulled himself together" and managed to put on a good front. He was exhausted and tearful by the time we got home but in front of the professionals he seemed reasonable. It seems quite unfair that others don't see the same picture. Not that we want everyone to see our loved ones when they are vulnerable but I sometimes wonder if I'm in a parallel universe seeing a different lifestyle altogether.

  5. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I understand all that you are saying.I have had (still get) all the feelings that you mention.
    It is a disgusting and horrible disease.
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    yep me too
  7. mandyp

    mandyp Registered User

    Oct 20, 2004
    Hmm, as Christmas and New Year beckons I too am feeling a little depressed. All around are people saying that this year has been awful, roll on 2006 where it'll be better. Except, for me, I feel that it won't be any better, in fact it will be worse!

    Mum will decline more which with a new year coming fills me with dread.

    It was Dad's 60th today and we all went away for the weekend together and it went really well, think both Mum and Dad had a great time. Clearly Mum hasn't gone as far down the road as your Dad Nat, but I guess we all have to live for the moments where there's a glimour of 'good' no matter how small that may be.

    Also, the thing that I do to try to stay upbeat is remind myself that while Mum is important to me, there are many other people that are equally important, Dad, my Husband, daughter, friends etc... I suppose we have to try to find more good things around us to compensate for all the trash that the 'higher' being slings at us!

    Life has played a cruel trick on all of us and we just have to try to enjoy the person we care about as much as we can for as long as we can without forgetting that there are other people who need us too. Without the support of my mates I'd surely go round the bend myself. Don't mean to sound trite, I think the downs can be so unbearable, hope you feel better soon.
  8. jc141265

    jc141265 Registered User

    Sep 16, 2005


    Thanks for your attempts to remind me of the good things, and don't worry I am well aware of them in fact if anything I have worked hard for them because I know I need them. I put a lot of energy into my relationship with my partner, his daughter, I make sure I stay in touch with friends and I work hard on making my career something i enjoy too. What is it they say about lucky people? Funnny how the harder they work, the luckier they get! :p ;) I am very 'lucky' for all the things I have got, I am even 'lucky' that i have such a wonderful relationship with Dad. I do appreciate all of these things.

    Oh I do look for those glimmers of good, but as you say your Mum hasn't gone as far down the road as my Dad and for anyone's sake I hope they don't take the path Dad has. Not saying my lot is harder to deal with, I think it sometimes might have a few less 'glimmers of good' however nowadays so requires a different kind of coping. I see a lot of dementia sufferers who don't seem to go the way my dad has. A friend of mine was telling me a 'funny' story about dementia and her life the other day and I realised that although there was a lot of 'funny' stuff in the first few years with Dad, i.e. things you just had to laugh about even though underneath it all it was quite sad....I have to say that these days there is far less of this, its gotten beyond that now I feel. I guess its 'funny' when the other person can still see the funny side too, still has some control to recoup from a mistake/strange behaviour? These days the joke has gone too far. :mad:

    As for the other kinds of glimmers of good, Dad blowing kisses is one, Dad smiling and laughing at me is another, Dad being an absolute hero by trying to fight this disease is one more, but I do feel these glimmers are getting less and less and most have an underlying pain these days. Glimmers outside of my life with Dad, they are there too of course, and thats probably why I am so fed up with all this pain from the Dad 'situation', because if things were different both he and I should be having so much more fun, and really enjoying such glimmers, happy that we worked hard for them, knowing we deserved them and we are the type who does appreciate the good thiings in life we get. Probably what also makes me mad is I see people everyday who don't really deserve 'glimmers of good' having a jolly good time and it seems unbelievably fair that they have no realisation of 'their' glimmers of good and how fortunate they are, they don't even appreciate their good life!

    Anyway I am blathering on, thanks all for your words it was good to know people understood and it kind of felt good for me to have a kind of 'hear hear' chorus follow my words, an agreement of protest against this disease.

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