1. sheena

    sheena Registered User

    Aug 4, 2007
    22
    Haven't posted before but this has been a difficult few weeks and today culminated in being told next time we made a particular trip he would go on the bus and he wouldn't have to put up with me - that hurt. Everything is done to help him and he still a year after diagnosis says he doesn't have AD and fights me at every turn- how do you get over the hurt - from reading talking point on various occasions things will only get worse. We haven't retired yet now all our plans have gone.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,708
    Kent
    Hello Sheena, welcome to TP.

    It hurts now and I`m afraid it will go on hurting. It isn`t only the one with the condition who`s affected, it`s the whole family, with the partner bearing the brunt.

    Your husband will be fighting for his independence for as long as he is able. When he has a good day he will be in denial, but when he has a bad day he will be angry and frightened.

    I hope I haven`t been too outspoken, but this is a cruel disease. TP will be here to give you as much help and support as possible, as all members know what you are going through.

    Please keep posting. It has been a life line for me and I hope it will be for you too.

    Take care

    Love xx
     
  3. sheena

    sheena Registered User

    Aug 4, 2007
    22
    Thanks for replying which confirmed what I really already knew it isn't an imminently life threatening disease but life changing for all the family and I do realise for us we at least don't have our children at home having to live with this horrible disease. I think what had hurt the most was the fact that I have found a patience and strength I never thought I really had but no matter how I tried over the past few weeks it wasn't good enough but suppose I will just have to dig deeper and deeper as time goes on. It is definately living with a different person and yes you are right denial does come into it a lot. I will keep reading and as time goes on maybe be able to conribute in a more positive way than I have at the moment. Thanks again
     
  4. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Sheena,

    I hope you won't think I'm too flippant if I say that I think being a full time Carer is good preparation for sainthood!! I know I could not do it - and I love my dear Mum so much. Those of you who are doing the caring 24/7 and are subjected to the cruelties of the disease from your very nearest and dearest, are (IMHO) already saints.

    This doesn't help when it comes to coping with the hurt and the distress that their actions and spoken words cause though. All you can do is to remind yourself that YOU are doing the right thing, and it is the disease talking, not the "real" person. Cold comfort, but perhaps all there is to cling to at times.

    Sending you some big {{{HUGS}}}
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,708
    Kent

    Sheena, all the patience and understanding in the world will not be good enough at times. But I hope there will come a time when your husband realizes how much he really needs you. Unfortunately it will probably not happen until his condition deteriorates to the extent that he does accept he has the condition.


    You can do no more than your best, and it sounds as if you are doing your best already.

    You will need to take your own welfare into consideration too.

    Love xx
     
  6. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Welcome to TP, Sheena.
    I hope you feel the strength that comes from others supporting you and understanding how you are feeling. This illness is often described as 'the long goodbye' and that really does sum it up very well. It is heartbreaking to see your loved one change in such a way, particularly hard, I would imagine, when it's your partner. As you say the illness not only robs you of the person, but your hopes for the future too, your retirement plans and so on. Depending on how the illness progresses, and the individual, your husband may or may not come to accept that he has dementia. In my father's case he never understood that there was anything wrong with him- he always blamed the external world for being 'wrong'. The only positive about this was that he never had to face the reality of how the illness would eventually destroy him. However he did move into a new phase where he was more accepting of his limitations - he stopped insisting he could drive, for example. Unfortunately the full time carer sometimes must seem like an over strict parent or even a prison guard, to the person with dementia, always stopping them from doing things they know they are perfectly capable of doing! Generally speaking, it is better to 'go with the flow' as much as possible, deflecting and defusing rather than diasgreeing with them , though sometimes of course, you have to insist on something. I drew the line at dad going out in his pyjamas, for example!

    No-one can take away or lessen the hurt you must feel, Sheena, when your husband is being so difficult with you. As others have said, try to remember it is the illness, not the person. Imagine a gremlin is inhabiting your husband and making him say those things, which are so contrary to his real nature. Following up my reference to the illness being 'the long goodbye' I feel it is helpful, if you can, to keep up as many contacts and activities as possible with friends and family. Also try to share the burden with others, so that you get some time to yourself to refresh your energy. I suspect your husband won't accept 'carers' at this stage, so I appreciate how difficult this might be. However as the illness progresses you need to be able to have some life of your own, some small pleasures to enjoy, if you are to remain strong enough to continue coping with pressures, so take any opportunities you can to do some things without him.

    This illness is cruel but you will cope. Cry when you need to, get as much help and support as you can from others, including TP. Cope with things a day at a time.

    Thinking of you,
    Blue sea
     
  7. Deeessex

    Deeessex Registered User

    Jul 16, 2007
    36
    Essex
    Hi Sheena
    I share your hurt anger and sadness. My husband has also been diagnosed and is now in denial. Its the most horrible thing in the world to hear someone you love being so completely out of character and being downright horrible to you. I draw a deep breath reassure myself its not me really its the vile disease thats robbing us of our loved one.

    Sometimes I feel intimidated by my husband and I can honestly say I have never felt that before. He is not physically agressive but the anger and verbal tirade can explode out of nowhere. Its a scary feeling. I have listened to others who have given good advise about removing yourself from the situation and I have to say it works . I usually make an excuse to go to the shop or to do something in the garden. usually given space the situation dies down. Dealing with the feelings it leaves you with is something you need to share sometimes - a friend can be an angel in disguise.

    I hope you continue to post . Sometimes just saying it out loud helps!
    Best Wishes
    Denise
     
  8. sheena

    sheena Registered User

    Aug 4, 2007
    22
    A big thanks to all of you for your comments support & of course hugs. In a lot of ways I am already putting your suggestions and comments into action. I do have a good family support but at the same time it is difficult for them to understand, which all of you seem to be able too. Been a bit better today and hoping for better tomorrow - need to get my sense of humour back this week - normally it helps me along . thanks again
     
  9. sunnyday

    sunnyday Registered User

    May 8, 2007
    1
    London
    comforting to know

    that so many of you are going through the same thing.
    This is my first post, so its all a bit strange to me, but just reading through your notes, seems comforting to me. My mum lives with me and has AD - diagnoised about a year ago, she's a different lady and I'm finding it so hard to cope with, her mood changes, lack of sense of humour - a totally different lady.
    Today was not a good day..... hopefully tomorrow will be better - for both of us!
     
  10. Big phil

    Big phil Registered User

    Jun 27, 2007
    12
    East Sussex
    coping

    Hi sorry to read of yet another in 'our' situation. One of the other writers is so right with the advice of deflection rather than confrontation. My wife never accepted her illness... maybe that was her coping strategy ??, I found it always best to avoid confrontation and managed largely to just go off on a different tangent in a conversation, but I accept its difficult when it comes to practical considerations, work round it don't hit it head on!

    I cant recall how many times I sat down and said to myself..." I cant cope with this" ...but then one just does.. generally because you love them ... or at least loved the person they used to be.

    Part of my coping strategy was to keep a diary... in the computer where My wife couldn't find it.... I scored each day on the quality of the day for her, probably me too, I don't doubt the 'score' for the day was largely subjective and the criteria probably changed over time, but it worked for me....
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    ah! another diary person...

    It has been such a boon for me to keep a diary of my Jan's illness.

    Ours has been going on the PC for 7 years now. Over that time it has changes to reflect our changes in living. At one stage the diary kept parallel threads - one contained my observations on Jan's day, and the other recorded my own feelings and despair.

    These days the diary records all our time together when I'm visiting, and observations I make, things that Jan may do [a smile is a major event now].

    Besides being, as you say, a coping strategy, I find the diary invaluable as I can go back and compare the situation now with any time in the past 7 years. I don't do that often as it is quite upsetting, but it helps in some situations.
     
  12. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    I keep a diary too and I'm hoping that the record of 'good' days or events, when they happen, will bring solace in the future. Also, I think it will help, in the future to be able to remind myself how much I have done for my loved one. I hope that doesn't sound smug. I don't do a fraction of what others on this site are doing, but for me, it is as much as I can and I hope, in the future when days are darkest, I may be able to fend off the guilt monster for a few hours . It is also a way of recording my mum's wonderful character and putting some loving and even at times lighthearted perspective into the sorry journey she is on.
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,708
    Kent
    I have 2 diaries now.

    The first I began in 2004 when I realized my husband`s change in behaviour was more than that of a `grumpy old man`. The second, is on TP, less detailed and more anecdotal.

    Whenever we have an appointment with the consultant, I print off the latest 7 entries of my original diary, to give him an idea how our life is affected by dementia. When my husband sees the consultant, he presents so well, no one would believe I had been writing about the same person.
     
  14. lindsey.deane

    lindsey.deane Registered User

    Aug 10, 2007
    9
    South Wales
    My first entry

    Hi there

    I'm new to all this so please bear with me.

    It's been a rollercoaster last couple of years for me and my family. My dad has Pick's Disease which I believe from what my mum has told me is frontal lobe dementia.

    We've also recently found out that my grandmother (my father's mother) has early on set alzheimers.

    To say it feels like I've been hit with a hammer is an understatement. Things seem to be on an even keel with my dad at the moment whereas my gran seems to get worse each time I see her.

    I just take things as they come day to day but then all of a sudden I take a long look at my dad and I'm hit with the reality of it all. It's like a steamroller and it takes me a while to bounce back from that.

    Sorry to be so downhearted about this, but it needed to come out.
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Lindsey, welcome to TP. You'll find lots of support here, and some virtual friends.

    You have a lot on your plate, coping with your father and grandmother. If your grandmother has early-onset, your father must be very young.

    There are factsheets you might find useful, just click the factsheet icon at the top left of the page. This one is about fronto-temporal dementia:

    http://www.alzheimers.org.uk/Facts_about_dementia/What_is_dementia/info_fronto.htm

    I hope you'll find that with support it will become less of a roller-coaster, although it's a bit like that for all of us at times.

    Best wishes,
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,708
    Kent
    Welcome Lindsey.

    Please don`t apologize for being downhearted, how could you be anything else.

    It`s as well you have found TP, it will be a good area of support and information for you in the coming years.

    Take care, and post whenever you need. There will always be someone here for you.
     
  17. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    To Comfort You

    [Sometime in life is seem
    That you simply cannot cope
    When burden seems too much to bear.
    And you feel you're losing hope,
    When each dawn lies heavy, as you face the day ahead/
    With only fear and apprenhension, and a feeling of such dread.
    Yet, so ofter you forget
    That there is a mighty Power
    Ready to support you
    At each and every hour.
    With \ loving hand outstretched
    To help you and to guide
    To lead you through the shadows
    And for you to walk besides.


    As I am a disabled Carer to my husband furing the last 4 years and Peter is now in c are Home. It has only been through pray asking for support.
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,708
    Kent
    Welcome Christine.

    I hope you will find the support you need on TP and make lots of friends

    Love xx
     
  19. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Christine,

    You have found the 'right' place. Support, sympathy, and understanding. Ask away.
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    that day came to me , after years , years living with mum and her dementia

    I would of never believed that day would come , when my mother said to me when I told her something the doctor told me and not caring properly for my mother , because she has not had a blood test for 2 year [she won't let them do it , doctor did not believe me ]

    She turn around and said to me , don't know what I Would of done with out you, he don't know what his talking about

    how I perceived it , its all said in anger , frustration they feel at themselves , so I never took it to heart so it did not hurt my feeling .
     

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