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Is there any happiness afterwards

Discussion in 'Younger people with dementia and their carers' started by daizee, May 28, 2006.

  1. daizee

    daizee Registered User

    Mar 31, 2006
    51
    Broken Hill, Australia
    I guess this is a really stupid question , we all cope with things differently but as I have had a really rotten day full of tears and saddness I ask myself the question, can I ever not just get over this grief but ever feel happy again, right now it doesn't feel possible. Having looked after my husband for so long, watching him slowly deteriorate, I feel like a major part of me has changed. This long goodbye as it's called seems to have slowly numbed the happiness spots in my brain and I don't feel I will ever be the same. I can laugh at a joke or a TV program, and enjoy the company of family gatherings but there is always this dull heaviness in my mind that creeps down into my throat and ends up as a rock in my chest.I know that sounds overly dramatic but that's just how it feels , this saddness has become a solid part of me.My husband lays in his chair ,eyes closed mouth gaping open, so terribly thin and helpless and I know when he goes my whole body is going to shut down. How do you recover from this , how do you 'Get on with your life' afterwards, and how do you find the motivation to even want to......................................Daizee
     
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Daizee

    I haven't experienced the feelings you describe as a result of AD, but it does sound so like how I felt during & after my Dad's death from cancer (years ago now). That 'long goodbye' is really grief & mourning before the event, as you think about the life your husband is missing out on now, and will not be able to enjoy with you in the future. Apart from the personal future which you two have been robbed of, it's the Family things too, isn't it. Kid's & grandkid's engagements, weddings, graduations, babies. All things we hope to enjoy as we grow old together. But you will, in time, still enjoy such things; they will be tinged with sadness & regret, of course, but I'm sure that eventually you will find yourself saying "Dad would have been so proud of you ..." and meaning it.

    Hugs
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    So sorry that it has been a sad day for you Daizee. My mum has been in a Nursing Home since early January, and dad is having to rebuild. He is doing it by building new routines, and developing an interest in family history. We have redecorated and refurnished his lounge and dining room, it fills his time but I think also was an expression of a new beginning.
    My FIL died very suddenly last year, my MIL has coped by accepting that she has to live, because that is what my FIL would want. She has three friends who are also widows, and they go places together, they book holidays together; she is doing things that she woud never have done before. She too felt the need to refurnish her conservatory, where she spends a lot of time; to make it hers, a place without memories. She worries that people think that she is callous, wanting to be rid of the past, but it is her way of coping. She still hurts terribly, she allows herself 15 minutes grief a day (when she needs to), then pulls herself up by her shoe laces, and gets on. She does cross stitch, and she goes in her garden. She and I are very close (despite her being my ex MIL), we are friends; I know that she is often 'filling time', rather than wanting to live it, but hopefully as time goes on this will change, and the pain will lessen.
    Sorry Daizee, this is probably just depressing you further, the only thing is, you DO find the motivation, you DO recover (to some extent), you DO get on with living the rest of your life. I know how important my sons are to their granny, it has been their love for her that has helped her through the last year. Daizee, when the time comes, you will be OK - it will be incredibly painful, incredibly sad, but you will be OK.
    Love Amy.
     
  4. daizee

    daizee Registered User

    Mar 31, 2006
    51
    Broken Hill, Australia
    Thanks Lynne and Amy, What you're saying makes perfect sense and I'm trying to do the right things, my own Dad died in 2004 and I miss him more than I ever thought I would, and my Mum who came to live with us after couldn't get over it and died in 2005. I was dumbfounded when a Doctor told me (she was addmitted to hospital with a very minor illness) that he knew straight away she was going to die. He told me he had seen it before, she couldn't go back, but she couldn't go forward, she was stuck and couldn't cope with Dad leaving her behind. She died 5 days later. I still feel increadibly guilty for not being able to make it easier for her and as I was the only one of her children here and she lived with me I often feel responsible for her death. I know I was too caught up with looking after Gill(husband)and feeling sorry for myself to give her the attention she so desperately needed and it's only now that my own husbands death is getting closer that I really realise how lost and totally miserable she must have felt. Ive tried to learn from what happened to Mum , I sold our house as it had nothing but saddness in it , and it seemed to be bringing both Gill and I down,and moved out to a much brighter happier one with a nice garden and a small swimming pool for the grandkids planning on having many happy summer bar-b-ques, and in the process of moving went through and threw out things no longer needed trying to prepare for the future. Everybody said it was the best thing I ever did, eventhough I'm now almost totally broke, but the family love it and the atmosphere around Gill seems much more positive and happier and his spirits seemed to really pick up, but as all the hustle and bustle of the move dies down and once again I have time to think, I realize that nothing has really changed ,I'm just in a different place. Without my Mum, my Dad or my husband , I'm scared of the amount of saddness and feeling of being also 'left behind' that I'm going to feel, honestly the thought of socialising seems far too much effort . I've got the kids I know but they need to be able to handle their own greif and losses. Well right now I feel like a whinging pain in the @#&* and I hate that .Better go and find something constructive to do...................Thanks Daizee
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Daizee,
    Hang on Daizee, you have just said how you regret that you weren't able to be there more for your mum - your family will want to be there for you. My FIL's death, was the first close death my children and I have faced together. We travelled to be with my MIL the following morning; we all went to the Chapel of Rest to see Grandad, we went to the funeral together, and the following day we went to the garden centre to chose a plant for Grandad, that we now have in a pot in the back garden. That two weeks was such an intense time, but hopefully we surrounded my MIL with love. At times we comforted her, but she comforted us too. We love and need her, and she does us. Daizee, you are not just your parents' daughter, nor your husband's wife. You are your childrens' mother and a grandmother, you are part of their future, and they will want you to share that with them. You not only have a past, but a future too.
    Now stop feeling like a
    ; you are obviously a very strong lady, and I am sure that when the time comes you will face head on what you have to - but it is not the time yet. You will be OK Daizee.
    Love Amy
     
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Grief Knits two hearts in close bouns than happiness ever can: and common suferings are far stronger links than common joys." .........
    Alphonse De lamrtine .

    A Littile Girl Visited A Neighbour's houde Where her young friend had died .

    "Why did you go there ? Questioned her Father .
    "To comfort her mother ," she said.
    "What could you do to comfort her?
    "I climbed into her lap and cried with her" ,she said .




    come from your granchildren & a parting of
    leting go , then
    when you say
    yes because You Just learn to live with it
    It a hard long journey to get there ,but in the end your be a stronger person for it daizee
     
  7. daizee

    daizee Registered User

    Mar 31, 2006
    51
    Broken Hill, Australia
    Thanks so much for your kind thoughts and helpful advice, and I'm not just saying that. Just to read other peoples points of view and to think that someone I have never actually met has cared enough to sit down, think about what I have written, and reply just to help me feel better means a lot to me ..................Daizee
     
  8. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Daizee

    Look at the above quotes: not only are they different colours, but they contradict each other.
    The doctor who admitted your Mum to hospital during her last illness in 2005 told you that your Mum had given up on life, mentally.
    Her husband had died, leaving her behind, and she didn't want to go on without him.
    That isn't & wasn't a reflection on your care for her - it was how she felt about the cards life had dealt her.

    If she had been living with another of her children rather than you, would you have felt THEY were responsible for her death? Of course you wouldn't. So give that old guiilt monster the heave-ho right now, OK?
    There are some things you just can't fix. Sh*t happens, and we have to shovel it aside & move on, not put it in a rucksack and carry it along with us.

    Love & Hugs
     
  9. daizee

    daizee Registered User

    Mar 31, 2006
    51
    Broken Hill, Australia
    Thanks Lynne, I do understand where your coming from but don't you agree that when someone dies for a long time after ,you are left with the 'if onlys' , knowing you won't get that chance to do and say the things you knew you should but were too busy to so put off to a later date that is now never going to come. It's not a matter of wanting to carry @#!* around in a ruck sack, it's regret at time wasted, it's wanting to make the person know how much you loved them in case when they died they didn't really know, it's wanting to appologize for wrongs you tried to pretent weren't your fault, and thanks for things taken for granted. As Mum died about 7 months ago I guess it's grief, and missing her, and wishing I could have done something to make her still be here....................Daizee
     
  10. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear daizee, we cannot wish the impossible. We cannot undo the past. We can only live our lives to their fullest.

    I speak from the heart. My dear husband, of 35 years, died very suddenly.
    My children, after the first shock, said "our dad died a very happy man. He always did everything he could in life" Almost as if he knew.

    Fate, whatever you will call it, dictates how our life will go. We live it until then. Enjoy whilst you can, however you can.

    Fondest love,
     
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Daizee
    I recognise every word that you say,every regret,every wish that you make.
    Whenever I have lost anyone for whom I cared deeply, I had the same thoughts,if only I could speak to them once more,to say sorry for any hurt I had caused them,to tell them how much I loved them.
    But we cannot put the clock back,and there is a lesson to be learned from this.
    Be nice to one another when we can,even so I think we would still have some regrets!!
    Norman
     
  12. daizee

    daizee Registered User

    Mar 31, 2006
    51
    Broken Hill, Australia
    Thanks to all, sorry if I sound a bit negative, things are going pretty bad with Gill (husband) he has been having swallowing problems and has developed a terrible crackly way of breathing so the medicos he has fluid or stuff in his lungs that he is trying to breath through as is wind pipe does'nt close off as automatically as it used to when he eats, so he is to be taken off all but pureed food .All liquids must be thickened and he is basically on a puree diet, which I've tried but he won't have, I have been told to just do my best. The next step is onto food of a honey consistancy, which I am sure he also will not have. They have advised me not to have PEG feeding started for a range of reasons, so to put it bluntly, I guess I am going to have to watch him starve to death, there's nothing of him now..............I'm sorry, I shouldn't swear but life's a bitch and I hate it right now, God if you took your dog to the vet and said it can't eat they wouldn't tell you to just take it home and let it starve you'd have the RSPCA on you back. I know it's not the same but I feel so god dam useless.How long is this going to go on and how am I going to deal with it , God only knows and he's out to lunch.Which brings me to the 'if onlys', this is really not fair...........anyway this is not doing me any good I have just pull myself together and ......I don't really know what..... but find something positive to do like ........... cry my eyes out,kick the dog,slam the door, stuff myself with chocolate cake and feel like ****........sorry ,sorry................Got to go Daizee
     
  13. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Oh Daisy love, hang in there. I could cry for you and with you, as I know this is the stage mum is fast approaching.
    I have discussed PEG feeding, and also been advised against it. Once you start, it cannot be withdrawn, no matter how bad the situation is.
    I know it sounds hard, but we have to accept that life has a beginning and an end. Life is not fair, but who ever said it was going to be?! You have done and are dong all that you can to give Gill the best quality of life that you can under the circumstances, but his body is failing. There is nothing that you can do to stop it. Your job is to keep him comfortable; if you can get any sustenance down him, that is good - are there any flavours that he still enjoys? I don't think he will be consciously hungry, starving; you know what it is like when you are unwell and you just aren't interested in food. Yes, you may be useless trying to stop the inevitable, but you are the person who can make Gill feel loved and valued right up to the end - what a special person you are, what a responsibility.
    How long? I don't know. It will take as long as it takes - take it one day at a time, one hour at a time, one minute at a time. You can do it, you have to, for Gill. He needs your love and support, your strength as he reaches the final stages of his journey.
    Daisy, cry, scream, swear, slam doors and eat chocolate cake (don't kick the dog though!) all you like, if it helps you to do what you have to. You know that you have friends here that will do all they can to help support you through this time.
    Take care.
    Love Amy
     
  14. daizee

    daizee Registered User

    Mar 31, 2006
    51
    Broken Hill, Australia
    Dear Amy, Thanks so much, you are right . I had a dreadful day,I cried a lot, didn't have the energy to slam the door let alone kick the dog, and the chocolate cake made me feel ill.I think the point you made about the body failing is the reason I'm finding it so hard now , being able to eat 'normal' food was the only thing he had left of his former or pre AD life and now that's gone it's obvious that our lives are really starting to go there seperate ways .I know every thing you say makes sense but to see his body getting so cruelly thin, honestly he looks like someone out of a concentration camp, I can't help but fear how I'm going to cope as it gets even worse. But I know I have to stop thinking about 'me' and be there for Gill. He's tough as hell and I know he won't give in easily it's just so sad, I wish it was over but I don't want it to be over..........like you said ....day by day............Thanks Daizee
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi daizee

    I suspect we never will 'get over this' and it will always be there as a scar of experience. Whenever I feel really bad about things, I re-focus on my wife and think to myself 'anything that is troubling me is minor in comparison', and I do all I can to make her time with - and without - me a bit better.

    ... and then I leave her at the home where she lives. Much of me leaves her when I drive home. A big chunk of my heart and soul and energy seem to stay behind as well, when I leave.

    I found I had to find a form of 'tickover' for my life, a way to be able to amble along until something happened. A very few dear friends did try to help, but although I was grateful, it did not help me.

    So I ambled on some more.

    Over time, things do appear, and we can choose to ignore them, or tentatively to grasp them.

    I badly needed a break, asked a really long time friend of ours to come as a fellow traveller, and that is where my motivation to carry on began. Before that point, I was frankly wanting to end it all. Since then, while I maintain the best relationship that I can with my wife, I have been building a new life that does not exclude her, and never will

    Time, fate, circumstance, open-ness to change, and many other things need to come together.... but I know it can happen.

    For now, just take things slowly, day at a time.
     
  16. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Daizee,
    Just got back from the rubbish tip, and eaten a lovely ice cream. (You don't really want to know that, do you. but it was nice.) I know what you mean about the 'concentration camp' look, and eating being the one thing you had left. Mum has started to choke on things like scrambled egg, but manages if we take it slowly, but she does still enjoy her puddings! She seems to have one sleepy day, then a normal day. It is easy for me to sit here and talk sense, but Daizee, I know that it may not be too long till I need you to remind me of all I have said. Of course you are afraid; if someone dies suddenly, we have no choice but to cope; with a long death we don't know how long it is going to take, what is going to happen, can we take it emotionally. We want the suffering to be over, to move on into the next phase, but the thought of losing the one that we love so much is so painful. Daizee, you have to grieve, it's OK, because getting the emotion out will give you the strength that you need to support Gill , weakness and strength can co-exist.
    So Im glad the dog survived intact; chocolate cake? well I've taken to eating dark chocolate, on the basis that small amounts are actually meant to be good for you (have found I can't binge on it in quite the same way).
    Take care, love Amy
     
  17. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Daizee, was so worried as TP so sl...ow at present.

    I really do not know what to say to you.........other than .herefor you.

    I guess you have to experience it to know it. Doesnt mean we do not emphasie with you.

    You are where I never want to be. Feel for you. Tell me whAT we can do to help.
    Love and whatever you want. Connie
     
  18. McK

    McK Registered User

    Sep 13, 2005
    62
    Pgh. Pa. USA
    Waiting

    Dear Daizee,

    I can feel for all that you are going through, since my wife is in somewhat in the same situation. My only thoughts are, and these are my thoughts only, are that I look forward to caring for my wife every day that she has left. We lost our oldest son some thirteen years ago by suicide, here at home, and we didn't have the chance to say good-by or tell him how much we loved him. My wife was in the early stages of AD then, and to say the least, she was very confused by the circumstances. I guess what I'm trying to say is, when you're caring for a loved one, their is still life in no matter what form, and the memories of the past are what keeps us going plus, in my case, a strong belief in God. We can still tell them how much we love them and by caring for "all" of their needs, we show them the true meaning of love. You and your family are in my daily thoughts and prayers. - McK
     
  19. daizee

    daizee Registered User

    Mar 31, 2006
    51
    Broken Hill, Australia
    Thanks to all, You all have experienced so much of your own pain and all I can say is ,does'nt it get so very heavy, and Bruce we can only amble as the weight of this grief is sometimes almost too physically painful to carry.Gill is a determined and headstrong man and certainly not a quitter, If his illness was telling his body ' it's time to give up', he'd be thinking ' don't tell me what to do, I'll go when I'm good and ready', I know that's how it's going to be, and I feel one day 'when he's good and ready' he'll just slip away, I just can't help wishing all that strength and determination could have been used go on living instead of dying. All I feel is very sad , and very small like a kid left behind as he goes off on this journey without me never to return . I miss him so very much already so I guess that says I'm beginning to accept the inevitable, but it's a whole lot blacker than I thought it would be, and it feels so cold and so empty..........I'm sorry , I know I'll deal with it, God knows we have no choice........but right now it sux................Daizee
     
  20. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    You are right Daizee, it does!!
    Love Helen
     

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