1. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    I've been reading a lot about denial in the threads today. I admit I'm in denial and I've known this for over a year now. It enables me to cope. It enables each day to have some happiness and peace. It enables me to pretend that everything is normal with Alan and myself. My denial helps Alan because he's spared from seeing the unthinkable in my eyes, voice and actions. This denial enables me to be loving and hopeful. Yes, hopeful. How much more can one be in denial. I hope that tomorrow will be as good as today (and today I was depressed) BUT I am o.k. and the day went really well. I hope that we'll have a really nice holiday. I hope that we can go for a cycle ride or go canoeing on Saturday and that the sun will shine. I hope that the days will stay ordinary. I KNOW THEY WONT. But denial helps me on a day to day basis.

    I've just realised why I was so depressed today. Yesterday I looked up that site stating the 7 stages of dementia and I realised just how far up that scale Alan was :eek::eek: I was shocked and horrified but I've only just this minute remembered!

    I think when it comes to important things like Alan driving, then I had to face reality. I had to face reality regarding a Power of Attorney etc. etc. BUT unless it's necessary I AM IN DENIAL AND I WANT TO STAY THERE AS LONG AS POSSIBLE.

    Love Helen
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Helen, I don't think you're in denial.

    You know exactly what the future may hold, and you are fighting to keep it at bay. That's not being in denial, it's being positive.

    I was exactly the same. I made the most of every opportunity, John and I travelled all over the world, and had frequent breaks in between. We went out for meals, and John went to art classes right up to his infection last year.

    Positive thinking, no regrets, happy memories.

    May you have many more of them together.

  3. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Helen, I wanted to stay there

    But, it hit's you in the mouth.
    And you cannot stay in that comfort zone any longer.
    I am trying to plan a holiday for Ron and I. This is where I have realised, he is not "he" anymore, and I am not me.
    It is like getting out of bed in the morning, warm comfy duvet, and suddenly cold reality.
  4. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Hi Barb

    The thing is Barb, it did hit me in the mouth but I have already put it behind me and I'm back to normal. It has'nt got hold of me yet :D I really think Talking Point helps (I don't use abbreviations because of new users) and still don't know what the abbreviation U3? is in Sylvia's thread).

    I think I'll know when things have change irrevocably but until then there's plenty to live for and to love for. I know what I read about those stages and I know where Alan fits on that scale (near the end) but it's only a scale and it sounds worse that it really is in our case. Alan cannot remember my name - now that sounds bad doesn't it. BUT he knows who I am so I think "what's in a name"!! I think it'll hit me really hard when he loses mobility (if he does). I think my posting then will be radically different and God knows how I'll cope but I keep saying to myself "you all cope one way or another, so why wouldn't I".

    I think about you and Ron going on holiday a lot Barb and I think it's great. For you to even contemplate it, there must be something that tells you that it's still possible. Have you booked it yet?

    Love Helen
  5. AJay

    AJay Registered User

    Aug 21, 2007
    Hi Helen

    I don't think you're in denial, I think you're making the very best of things and staying positive. I was in denial because I didn't listen to or believe the professionals. I didn't act on what they were telling me soon enough. I pushed the glimmers of reality firmly down into the pit I thought they belonged in and carried on ignoring. Dad's gone now, I feel I could have done better for him but I think he was happy enough.

    You're doing beautifully well and you're doing your absolute best for your Alan. He sounds lovely and I'm sure that he totally knows what you're doing for him. Look forward to those days in the Greek sun, look forward to the days cycling and canoeing and make the most of it. You'll cope with what's ahead when it happens.

    AJay xxx
  6. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Hi Hazel

    Do you really think it's positive rather than being in denial? Because I'm learning as I go along I just use words that seem to fit and "denial" seemed to fit. I would love to see it as 'positive' instead. Or do you think it could be that I'm positive about being in denial?

    Love Helen
  7. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Hi Helen

    Not booked yet. But we are going.
    I am mad, because I know it will not be easy, but hey, who said life would be. Need to get Ron an M.O.T. And if OK, all system's go.
    Lot's of wonderful people on this site have been so helpful.
    For those of you who cannot go, and for those of you that would like to, let us hope Ron and I can. Then, perhap's we can do it for you all.
    I will keep you all posted. Different holiday, but, different life.
  8. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Helen, I know you're being positive. You're making the most of what you've got, for as long as you possibly can. What could be more positive than that?

    Don't worry about the stages. They're an average, as the mmse test tests an average. And who wants to be average?:D

    If you've read Connie's thread, and mine, you'll know that we're both now coming to terms with end stage, but we got there by different routes.

    Live for today, enjoy every moment you can, and don't cross your bridges before you come to them. That's positive!

    Barb, the same applies to you. Go for it, and enjoy every moment of your holiday.

  9. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    #9 BeckyJan, Apr 21, 2008
    Last edited: Apr 21, 2008
    Dear Helen:

    I am not so sure you are in denial. You seem to be very clear in your thinking. You KNOW where you are NOW - take each day as it comes. Yes, it may get difficulty but face that when it arrives.

    There is no way you can anticipate the future - and that applies to non-dementia people too.

    I am sure you will have wonderful days with Alan - grasp them whilst you can. Yes things may get harder but deal with them as they arise. I could never have anticipated how things would develop for us.

    Thinking about you alot. Love Jan
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Helen.

    U3A in my Thread is the University of the Third Age. Hazel/Skye told me about it and I joined, hoping for a bit of stimulation, new company and shared interests. Sadly I have not renewed my membership as I have been unable to attend any meetings, not feeling it fair to leave Dhiren unless it`s really necessary.

    Helen you are not in denial. If you were, you wouldn`t be with Talking Point.
    Perhaps you have been shocked, perhaps you have been upset or low, as you were today, but in the main you are trying so hard to be positive and make the most of the life you have.

    Talking Point does help, as we all know where we all are, even in the different stages, even in different life styles and situations. And you can say you are fed up and everyone knows why. No-one will judge you and we will all try to be supportive.

    Try not to pay too much attention to the Stages. Alan might not be able to remember your name but he is physically fit. Dhiren can remember my name but he is very stiff and unsteady. The stages overlap so much, you can usually pick out an aspect of each stage and apply it to the one you care for.

    Just keep posting and stay as you are.

    love xx
  11. Keely

    Keely Registered User

    Aug 6, 2007
    Denial can be a vital component to coping

    Hi there everyone
    It’s been a very interesting read of these postings. I don't think the semantic matter - denial, positive, coping, pretending or hoping define these as we might they are possibily very different for each of us. In my understanding denial is only an issue if it prevents us from being able to give the support to those we care for. For some of us denial could be an important aspect of coping.

    If denial means we: hope, pretend or wish, we can take someone for a bike ride, a picnic or what ever, even if the event never happens does it matter? I don't think so. So long as we do our best not to force our loved ones to do things they are not capable of and cause them and our selves’ distress.

    We need to be kind to ourselves as well as the people we care for in my view as much as their reality is changing ours is changing too and it takes time to adjust and some denial might be necessary to do this, we are only human.

    For me like Helen hope is vital and I suspect our hopes will change over time as we watch the people we love deteriorate. I keep hoping I will keep seeing glimpses’ of how my mum was, I hope other people will not take against her and forget what a strong kind women she was and just remember the difficult one (the very difficult one! )this illness in changing her into

    Every time I spend time with her there is always the little hope that she will have some moments of pleasure while she is with me and her grandsons. Often there are these moments and I hope they will happen time and time again and I hope I can cope with if one day these little pleasures don't happen anymore.

    There are times when the reality hits me hard e.g. a situation arises and it highlights how my mum is deteriorating and the harsh reality is she has Alzheimer's and will deteriorate further unless some other serious illness intervenes and shortens her life. But that I want her to be the mum she was doesn't mean I am in denial - I think my head is just catching up with changes in her that I am witnessing and I feel sad sometimes very sad both for her and for me. But I still hope for better next day.
    Just my thoughts!
  12. ishard

    ishard Registered User

    Jul 10, 2007
    Helen I too dont think you are in denial I think you are in the grieving process. :(

    7 stages of grief

    Shock or Disbelief






    Acceptance and Hope

    I think you have finally realised what is happening and now you are grieving for Alan, yourself, your lifestyle and your future hopes.

    This is normal and is something we all go through at some time and to some degree.

    I went through this last year and its hard grieving for a person who is actually still with you in body even if they have changed to become a person you dont know anymore. Hence you grieve.

    I wish you well and lots of hugs.
  13. andrear

    andrear Registered User

    Feb 13, 2008
    Hi Helen

    Don't think we've spoken before but I do know that reading what you say on this site does not give me the impression of someone who is in denial. You come across extremely positive and uplifting, you seem to take the bull by the horn and get the results you want.

    We all have our good days, and we certainly all have our bad days/weeks etc.

    Scales, what the hell are scales? All I know is that my dad is not the dad who brought me into this world, played with me as a child and put me on the straight and narrow in my teenage years. My dad is not the grandad that my sons know and love. He is a shell of a man who unfortunately for him has this awful disease which nobody can help him with.

    Scales, I'm afraid do not exist in my world, because if they did I know that I would constantly be reading too much into what they say. And more importantly, forget the scales and just take a day at a time and keep on posting onto the site, where we can all read your dilemas and be able to help in any way we can.
  14. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Hi All

    Thanks everyone. I'm going to keep these posts and read them when I feel I need a reminder. I must admit that it's something that's hard to get my head round but I'm trying.:)

    Today has been a normal day. We seem to have lots of just normal days. I've carried on having a good clear out and Alan's been busy shredding lots of old papers (which I've pre-sorted).

    We've been shopping together and prepared lunch together. I think it's times like this that make me feel that there's nothing wrong with Alan. I don't think it, of course, it just feels normal!

    Naturally I'm making the most of every day. I think it's when I'm faced with the reality of the condition that it hits hard each time.

    Anyway thanks all, I do appreciate you.

    Love Helen
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    #15 Margarita, Apr 22, 2008
    Last edited: Apr 22, 2008
    Go for it ( denial ) they do say we are our own creator of our own reality in our own minds , so what make you feel good go for it .
  16. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Hi Helen

    You have always struck me as being someone who is positive about this illness. I would agree with Hazel.

    Yes, this illness has stages but they vary. Yes, it might have shocked you to realise the stages but all I would say is that they last can long time. The important thing to me throughout it all has been doing as much as I could with my Mum and retaining reasonable expectations of what is possible throughout it all.

    I do not think that you are in denial at all, but instead are coping with an illness whose progression is uncertain and are coping positively with living with the "nowness" (is that a word?) of it all.

    There are some days when you don't cope. This is when that nasty monster "grief" rears its head, and for a while you are down but then you realign your expectations and life becomes "normal" again.

    There are many of these times throughout the illness as differing layers are peeled away. I once said in a post that a quote that sprang to my mind was that of Shrek "Ogres are like onions, they have many layers". This struck me as being true of my Mum too, and dementia steals away each of these layers in turn until all you are left with is a living core of life. But if you realign what is expected with each layer then you live positively with each thing that you can do.

    What was a bad day for me one year became a good day the next year as each layer was peeled away. Look for the positive in each moment. You know what is happening but at each stage there can be things to rejoice and celebrate in. They change but you can still enjoy these "normal" things together.


  17. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands

    Hello Helen,

    I can empathise with you..for a long time I'm not sure whether I was in denial..or not facing up to what was happening..or not really believing what was happening.

    Because Dementia is so insidious you live with it until something makes you stop and think..

    Mameeskye has put it all in a nutshell..I cannot add to that because she words it so well..

    Just want you to know you're not alone out there!! And I think you are coping so well......enjoy your days together...:)

    Love gigi xx
  18. hendy

    hendy Registered User

    Feb 20, 2008
    West Yorkshire
    Dear Helen, Mameeskye and Gigi

    Mameeskye's description of the process of living and coping with dementia is absolutely spot on. Its a postive way of managing a negative (the disease). Yes you do have to accept the down turns and limitations to some degree, and then at the same time you have to make the most of what you have left of your loved one. I expect we can all think of examples where we've had to do this. You taking Alan on holiday is one.Barb taking Ron on holiday. An example of my dad was taking him off the ward for important family meals eg Christmas dinner, when we knew it would be risky, it was worth taking the risk. My husband used to take Dad for a quick pint! He used to say, it doesn't matter if we have to go to a different pub every time, it meant a lot to my dad to do something normal. Its all a balancing act. Its about being in touch with your own coping mechanisms as well. Sometimes we just have to accept that we are 'down' about things. Its a normal reaction to abnormal levels of stress.
    take care
  19. calyn

    calyn Registered User

    Apr 22, 2008
    Tyne and Wear
    You are Coping

    Hello Helen

    Don't think I can add much to what has already been said and expressed so much better than I can say, but just wanted you to know that I think you are facing things very positively. You aren't denying the reality of the situation. You are finding your own way of working things out and coping.

    When my dad was first diagnosed with AD I know I was in denial. How could this happen to someone who'd always had a marvellous memory? Surely the doctors must have got it wrong.

    Now, I feel detached enough from the situation to do whatever I have to for him, yet I still feel involved as my dad and I have always been very close and I want to do the best I can for him. Never thought at first I'd be able to do much without being emotional all the time, but I can. It's hard to explain, but somehow I suppose I have to put certain emotions aside just to get on with the business of taking care of him. It's in a way like I've become a bit hard, yet I'm not entirely hard as I often sit and have a good cry about things when I'm alone.

    We all develop our own ways of coping, and I think you are being very positive and facing things squarely and not denying the reality of the situation at all.

    So don't be too tough on yourself.

    Thanks for supporting me. Thanks also to everyone who has replied to my posts. Hope I can help support some of you as well.

    Love calyn
  20. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Hello again Calyn

    I can identify with the above. I like to think of the becoming hard bit as being very solid for him. I am sure Alan feels secure in my strength and I bet your dad does in yours.

    This site helps me to become just that bit more of a whole person again. A place where I don't have to be solid and strong.

    Love to you Calyn


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