I'm scared, I think it's near the end

Discussion in 'ARCHIVE FORUM: Support discussions' started by daizee, Apr 18, 2006.

  1. daizee

    daizee Registered User

    Mar 31, 2006
    51
    Broken Hill, Australia
    I feel such a fool sitting writing this but I'm really starting to get scared that my husband is nearing the end of his fight with AD. I try not to think about it , keep positive smile a lot, keep busy but every day he just seems to be getting weaker and weaker . Seven years ago he was closing his business as things were getting difficult for him and when he was diagnosed I was told he could have up to 20 years, then it was 15 then 5 and now it could be less than 12 months .I'm so used to him having AD that I just though it would go on for ages, and I think I clung on to that initial 20 year thing because as he's only 53 and was always so fit and strong I just thought he'd hang on forever. I didn't really think I'd have to face this so soon.But seeing him tonight so thin and weak seemingly unaware while I wash where he's soiled himself again, it's all to obvious that he can't go on like this forever . If we lift him to a standing position he can shuffle a few steps by himself but has to have a wheelchair.He can barely speak, maybe a couple of words, he can't control his bladder or bowels and coughs all the time when he tries to swallow. He hardly eats so I give him sustagen in milk when I haven't been able to get him to eat anything which is nearly every day now. He was put on 10mg of halaperadol for anxiety about 4 months ago and I'm wondering if I should stop it to try to see if it could make him a bit more responsive ,but I'd hate to see him scared and upset again with all the other problems he's got.When I put him to bed he can't turn himself over, just stays where I put him with his mouth open looking straight ahead. I turn him during the night as I have to change him when he wets the bed even though he wears incontinance pants ....But he still knows me and our children , if I hug him he kisses my cheek and it seems as though he tries to tell me things that are important but I just can't understand him .I'm frightened all the time that I've done something wrong , that if I had just done something differently he wouldn't be deteriorating so quickly. I know I've been told that the last stage goes quickly but what does this mean? I just want someone to tell me honestly what does happen , someone who has nursed a loved one to the end. And how do you cope with the grief and the fear that gets stronger every day as you watch them getting worse and you realise that you really are going to lose them forever.I know it sounds cruel and selfish but I don't care how sick he is I just don't want him to die. I can't imagine what it's going to be like without him , not being able to touch him or look into his eyes or just know he's still here. I feel as if part of me is being ripped away and I don't know how I 'm supposed to function without it. I realise that he would not want to live like this and I should be thinging that death would be a blessed release for him but all I can seem to think about is the terrible loss I'll feel when it happens and he's no longer with me.I know I've got the strength to survive this but it hurts like hell, so if anyone else has been where I'm heading, please tell me how it really is and how you get through without falling apart. Because there are times when falling apart seems just around the corner.
     
  2. Tess

    Tess Registered User

    Nov 29, 2005
    22
    I live in west wales
    Hang on tight

    Hi Daizee
    Just read your post and, although I haven't really got anything constructive or helpful to say because i haven't been through what you're going through now, I just wanted you to know that someone has seen what you've written and is thinking about you right now! Wish I could reach out and give you a big hug while you wait for some of these brilliant members of TP to give you a more helpful message than this.
    Hang on tight. X
     
  3. miranda

    miranda Registered User

    Apr 6, 2006
    54
    be strong

    i wish i could say something that would help.it must be so hard for you- i know that although you are doing an excellent job in caring for your husband you must also look after yourself ! don't be so hard on yourself by wondering what you could have or might have done- all anyone can do is do their best at the given moment. be strong.
     
  4. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    daizee hi,

    It is so sad - your post. It is what we all fear the most. You are going to loose someone you clearly love so much and when he is gone your life will never be the same again. The sense of loss will be so dreadful as you clearly understand.
    The hardest part for you maybe is that in spite of all the love, care and attention you have poured into this awful situation it has made no physical difference. That is because whatever you do, a doctor does, a specialist does there is nothing that can be done to turn the tide of this relentless sickness.

    I suspect you have given your fella so much love and happiness that maybe he has done better and certainly been happier than most. You must be congratulated for that. He clearly loves you as you love him and no human can have done more. In his worst hours you have been there for him. That is perfect. being there is so magic and important to someone who is departing - I suspect.

    You have expressed the fear of remorse, loneliness and sadness that I fear most - a terrible dragon - I wish you well with it - I am certain there is a life after the loss but it will be hard getting there - but you will - you are a very strong lady..

    Love

    Michael
     
  5. Louise Jones

    Louise Jones Registered User

    Apr 11, 2006
    7
    Birmingham
    I've been there

    Hi Daizee,
    like the others whom have sent a post to you, I'm sending you the biggest hug ever and I know exactly how your feeling. I looked after my nan for 9 years and I lost her 3 weeks & 6 days ago! My nan was in hospital for restbite when I got the phonecall to say she had passed away, my life turned upside down and the pain was excruciating because even though your prepared, your not, because your not only losing the person you love but your losing the life as you know it. I can only tell you how I felt and still feel.....lost, lonely, desperately upset, and angry! but one emotion that I didn't feel was guilt because I know I loved and cared for that person so much, I did my best with looking after her. I felt proud to have seen it through, and one day you will feel proud too, and its obvious from your post that your husband loves you very much! Your doing a brilliant job, and try not to be hard on yourself, just keep your chin up.

    When I think of my nan, I think of her how she used to be before AD got to her, and I make sure I live everyday the way she would want me too! you have to look after yourself. I want you to know your not alone out there, and you, your husband and your family are in my thoughts and prayers.
    Take care of yourself Daizee,
    Louise x
     
  6. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Daizee,
    Sorry but I cannot answer your questions, but can share some of your anxieties. Mum can only shuffle when supported; she doesn't know us but does smile; she gets very sleepy sometimes; though she still likes her food, she often starts coughing when we feed her, so is beginning to have difficulty swallowing. I asked the nurse tonight, when difficulty swallowing starts, how long is the decline likely to take. She couldn't answer. Despite eating and having supplements she is losing weight, now weighs about 6.5 stone and is 5ft 4in - she looks like those people who were in POW camps. Everything you do makes you feel so useless.
    Maybe you have to let yourself fall apart sometimes, go with the pain, and then come back together again to fight another day.
    My MIL has just gone home. Her husband died very suddenly last year. How do I see her coping now? She keeps busy; she has joined a gardening club that meets once a month, a womens group, she has 3 friends who are widows and they go out. With me she lets her guard down and cries; tells me about those evenings when she breaks her heart because she misses her husband so much, ,talks about the desperate loneliness but she knows that she has to carry on.
    When her husband died, despite it being very sudden, she was not overwhelmed. I think that the natural shock reaction protects us. Our emotions and brains close down, don't allow the pain through that might destroy us.
    Daizee do not be afraid, you will be OK. Go with it, and let yourself be supported by your family and friends.
    Take care,
    Love Amy.
     
  7. angelaby

    angelaby Registered User

    Apr 5, 2006
    13
    manchester
    Setback

    do you know that i was so looking forward to getting my new computer and broadband so that i could communicate with others who could identify with what i am feeling and going through but i have just realised when the last time i logged on and realise now a form of denial.I switch my computer on - read other peoples contribution then play solitaire for an hour-download some music-have a look at my on line bank account then decide i am too tired to type anything constructive.I have just been off work for easter and going back was a vital distraction for me. I watch my mum watch television and think - who is that person-she sure as hell isn't MY mum.Mymum wouldn't have laughed at that inane sitcom.I give her an ice cream and she says 'luvly jubly' something she would never have said before.If i get animated about something e.g politics-she says'if you're going to shout at me i'm going home!' Her perception is so different now but i am the same person-but come saturday night she will still go out with her friend and i am the one curled up falling asleep on the settee before my favourite csi comes on.

    One hilarious thing is that i went to the doctors and said to her - my mum has Alzheimers and i need to look after her and i am overweight-smoke too much and probably drink more than is good for me-her reply-now is not a good time to give up smoking and drinking and i need to eat to have the strength to look after her.I tell you i came out thinking-what the hell-what will be will be.
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    You're no fool, and there's nothing wrong with feeling scared, or anything else.

    Take every kiss, give every hug.

    Daizee, I went through a phase some years ago of wishing my dad dead (because he was so ill - unselfish!) and then praying for him to survive in whatever state I could have him..... (selfish!).

    I felt I couldn't 'function' without him on my shoulder telling me what to do (even tho' by then I was married myself!) and when he was no longer mentally capable of being my guardian angel I felt I couldn't cope either....

    Love understands...even when words seem meaningless. Mere mortals die, our feelings for each other never do. And yes, my guardian angel is 'gone' but still around.... years of loving and caring mean they never really go away...... I just have to 'talk to him' in yet another different way, but nothing, nothing can take away the love we had for each other...

    Daizee, this is tough and horrid, horrid, horrid. You will get through it - you are already battling through one loss and clearly doing it with so much love in your heart....

    Here for you. TF, x
     
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    HI, angelaby!

    When I went to the docs a few weeks ago saying I couldn't cope with all the stress was told to 'take it easy' - "if you go under who else will look after them all?" (Well, I thought it was stress until then!)

    Yeah, right?! I'm piling on middle age spread thanks to comfort eating like I could supply McDs with enough fat for a week of frying burgers, the tax on my cigarette consumption might fund the entire NHS for a week and I refused a bottle of gin on prescription because it didn't come with an intravenous drip!:D

    My doc has been anxious about my blood pressure for how many years??? Has he bothered to check me out now? I figure I'd probably 'blow' the equipment.. No, because I'm now a 'carer' and saving the NHS a fortune as long as I can get out of bed in a morning and function (to whatever degree)...

    All joking aside, we DO have a duty to look after oursleves..... for ourselves.... suddenly we are looking after someone else and we seem to matter little...

    Daizee... (that was a 'nudge!' - hope you're taking care of yourself!)

    Love, TF
     
  10. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Dear Daizee,
    Your post reflects the utter sadness and fear we all feel, and yet, in spite of the physical and emotional pressure, we are scared of the end of this task and life with the person who depends on us so very much. For all the negative things AD brings with it, it also generates some unexpected 'riches', such as a special bond between the sufferer and those who manage to enter his/her world and make them feel loved and valued.
    Daizee, I can't give you the answer(s) you are looking for, we are not quite as far on our journey as you are, but I am thinking of you, and hope that you can concentrate on the present and find consolation in the fact that you are doing all you can for your husband, accept that the inevitable end is not within our power: grief is the price we pay for love!
    Best wishes!!
     
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Daizee

    Just a line to let you know I'm thinking of you and your family. Post to let us know how things are today, if you find it helps to share.

    Best wishes
     

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