1. christine_anne

    christine_anne Registered User

    Nov 2, 2006
    2
    Derbyshire
    My husband has been diagnosed about three years and today is very down because he is feeling useless I am trying to keep him motivated although he is now very limited on what tasks he can do. The worst is watching him struggle knowing you cant stop this awfull decease. I am worried I may not stay strong enough to see him through it. When he reaches the next stage and maybe does not know me - any hints on staying strong?
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hello - it is so sad, isn't it. It is so important to keep strong but 'how' is more difficult. I ebb and flow for no reason at all.

    I do suggest you meet as many people in the same position - probably through the Alz Group. The North Derbyshire branch is superb (we are quite active within it) It has made a tremendous difference to me and it does enable me just to pick up the phone to talk to someone who totally understands - the same effect as TP.

    Most people will advise just to take each day as it comes and somehow because it is so gradual, you will just learn to cope with each hurdle as it comes along. Do you get support from your local surgery and CPNs.

    My husband, too, has gone through depression because of his 'failure' to do the things he thinks he should do. He does seem better when he meets others who he thinks are 'worse' than he is - he then thinks he is very 'lucky'!!!!!!!!!!
    I do try to highlight his past achievements and tell him he has done his fair share - his turn to sit back and enjoy 'sort of thing'.

    Sorry to ramble - TP does this to me - I am sure you will find much help and support here.
    Best wishes Beckyjan
    (send a PM if you want to identify where you are and I can be of help.)
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,577
    Kent
    Hi Christine, welcome to Talking Point.

    My husband was diagnosed last year, but with hindsight, it had been coming on for a few years before diagnosis.

    All I can say is you will learn to deal with it, because you will have to. You will make mistakes at first, and misinterpret what is happening, but you will develop an understanding, based on what you know of your husband, his basic personality and character, and what you will learn about ALZ.

    There may come a time when your husband appears not to know you or your name, but don`t think that`s final. It may just be a lapse, and your name will come back to him.

    You will be strong because he will need you to be. That doesn`t mean you won`t break your heart at times, and despair, but when you do, you will find you have many friends on TP who will always be here, to listen and to share.

    In so many different ways and situations, we are all going through it. I`m sure you will find someone you identify with, who will help you stay strong.

    Take care, Sylvia
     
  4. drummer-john

    drummer-john Registered User

    Apr 29, 2005
    18
    Leeds
    Hi Christine
    My partner was diagnosed three years ago this week, and has also been in tears today. "I've lost the life I should have had" she said, and of course it's true. I suppose so have I. I can't add much to what's already been said on here - get as much help as you can, get some time to yourself, and take it a day at a time. And remember, there will come a point at which you can't cope on your own any more, and there should be no sense of failure or guilt when that time comes (easier said than done, I'm sure)
    Take care
    John
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Christine

    My husband was diagnosed six years ago, and he still knows me and all our family. We've had six relatively good years, so try to keep things as normal as possible for as long as possible, there are still good times to be had. Make the most of the good days.

    In those six years I've had two major crises, when I thought I wouldn't be able to cope, but I got through them with the help of friends and support agencies. And now I've discovered TP, which has become a life-line.

    Keep talking to people, keep your own social life as far as you can, and just take each day as it comes. It doesn't pay to look too far ahead, because you don't know with this disease how far ahead it is!

    Good luck,
     
  6. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    A load of support on tp all in the same boat

    Dear Christine Anne
    only to agree with what has been said already i am 55 my hubby is 60 he has been diagnosed 2 years but ill for a lot longer i like you try and keep him motivated he also can be down cos of feeling useless it is not easy but i am a great beleiver in sharing the load and i find no better place than tp
    hints on how to be strong i dont know at times i just know for me to come on tp maybe try to help some one else joke in the tea room i like you worry will i be strong enough to see him through it But i do hold out more hope now i have found tp
    sending love and a big hug i know from all
    Bel x
     
  7. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    786
    Buckinghamshire
    Staying strong

    Dear Christine Anne,
    Welcome! You are in good company here, browse the site if you feel like it, and ask away if you have any worries.
    AD brings along a lot of heartache and sadness, but there is laughter and happiness along the way, too. The better you are able to accept your husband's condition, the easier it will be to cope without judging him, without taking his odd behaviour personally, and without expecting too much ....
    It is a steep learning curve, and the responsibility of making adjustments lies with the carer, since the patient is unable to adapt.
    As a family, we have learnt to laugh about many incidents which, I suspect, would not seem very funny to any 'outsider'. We also point out and 'celebrate' every good thing we notice. It takes years of practice to be able to praise someone when he has just scratched a wooden table in several directions ....... by 'polishing' it with a zip-up jacket. He was busy, and he beamed at us because we 'recognised' his work!
    I have read many books and articles since my husband was diagnosed, but the one I found most helpful and empowering was 'Learning to Speak Alzheimer' by Joanne Koenig-Coste: a very good investment.
    Don't look too far into the future, Christine Anne, just make the most of your days together. Love conquers everything!
    Best wishes.
     
  8. christine_anne

    christine_anne Registered User

    Nov 2, 2006
    2
    Derbyshire
    Many thanks to the advice and support given to my first TP message, it has given me new hope to know there are people out there understanding what I am going through. As much as friends try to help I suppose its difficult unless you are going through the same. I have a superb GP which helps but little else support thanks again. C.
     
  9. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    #9 KenC, Nov 18, 2006
    Last edited: Nov 18, 2006
    Keep going we are all behind you at TP

    Hi christine_anne ,

    When I was first diagnosed with the early signs of Dementia I was really on the bottom and thought it was the end. We all go through this and it is horrible.
    But my wife and I walked up to our local Alzheimers office and once there we talked to the staff who were so helpful I could never repay them. After a while I got involved with the society and I have never looked back. I have met a lot of new friends and although it can never replace the things that were there before I used it as a new start to life and it is working. It may not work for everyone, but at least it is worth a try.
    On Thursday my wife and I went to a conference for younger people with Dementia were we met a lot of people we know already, but more important we also met a lot of new friends.

    Best wishes

    kenc
     
  10. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hello KenC - I think you sound to be a wonderful person. Well done for your determination, I guess, to beat this disease. My husband has also been quite wonderful in accepting his lot - unfortunately he is not computer literate - but he has faced his illness with great strength - I do admire him (and you) for that. Beckyjan
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #11 Margarita, Nov 18, 2006
    Last edited: Nov 18, 2006
    Lots of great advice already said , so just like to say that I have been in your shoes , when you say
    This may sound strange to you but for me the emotional pain is what made me stronger , every time to feel it and recognise it for what it is , Just your love for you husband an emotion of love a feeling to feel and not be scared of ,if you can feel that pain now you can face anything in the future , but yes still I try not to think of that time when my mother does not know me, as seeing that time is not hear yet and then it pop in to my mind so I think she may not know me but I know her and I know I love her and that’s all that matter to me .


    I find it’s a waste of energy to think that far ahead the mind visualization and the imagination is a powerful tool , now yes for me each day bring a new beginning joy and sadness, your choice in how you perceive it all .

    Sadness and tear our what the heart can’t say in words ,out of sadness came joy of the love you had, and still have , its what dreams are made of

    now I am at the stage that I take each day at a time with my mother , I have motivated her in getting her to go to the AZ day centre , doing so have motivated me also after a long while to get back in to work , work helps me , where for you maybe a few hours out of caring may help you Or finding something you can still both enjoy , but finding time out for you is very important as I am sure you know

    Good luck and welcome to TP xx
     

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