what to do when you just cant go on

Discussion in 'ARCHIVE FORUM: Support discussions' started by kathm, May 3, 2007.

  1. kathm

    kathm Registered User

    Apr 26, 2007
    Hello there everyone
    I was just wondering and having a bit of a worry about the future. My dad has alzhiemers and is doing well, he is on medication and has hardly deteriorated in the last year so that is ace, we have help from social services and between us all we manage ok( JUST ABOUT) but i must say the future scares me, i so desperatltly want to look after my dad till the end but know from my job what a mamouth task that would be and i dont know if we will manage it.
    I panic at times and feel so sad at the thought of him ever having to go into a home, part of me wishes he would have a heart atack or something and die before he gets to the latter stages of the disease as it is so cruel.
    How have other people coped with the guilt when you just can not go on anymore as a carer.
    It is something i dread
    love to you all
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    #2 Margarita, May 3, 2007
    Last edited: May 3, 2007
    5 years on not so much the guilty feeling that must come from how you think what other people think about you doing it , orhow my mum thinking about what I am doing . now I know my limitation of caring for my mother at lest I tried , if I had more family more support, how can you justifier it to anyone to making them understand it, you can’t un less they been they done it , so to speak .
    I never thought 5 years ago I could have even considered this, putting mum in care home.

    I wonder that about mum having a heart attract, stroke but that can be just as bad , if you have ever seen someone recover from a stroke I just wish that mum would pass away in her sleep , then I don’t want her to die at all . I try to block the ending because we are not they yet , its all just in our imagination call that denial I call it realty .

    Thats My view how I cope
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Kath, I`m not at that stage yet with my husband and dread it as much as you.

    I think we mustn`t meet trouble half way, but do the best we can, for as long as
    we can.

    Admitting we can`t cope any longer and accepting defeat is something none of us want to do. Some manage, some don`t, and others have no alternative.

    I really do understand your feelings about hoping your dad is prevented from going the whole way with Alzheimers. My son and I could see my husband having an accident, because he is becoming so unsteady. At times I think it wouldn`t be so terrible, because he is so unhappy, but then he says we must be thankful for what we have and I change my mind.

    So it`s as well it`s not up to us.

    Take care
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Margarita, after the care you`ve given your mother, you have no need for guilt, and no need to justify yourself to anyone.

    With love
  5. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    How to cope

    I wish I could give you an easy 3 step method of coping but I cannot. There isn't one, unfortunately.

    Eventually, as time passes, there comes the realization that taking care of the person with AD at home is no longer possible. Usually, the spouses hang on like grim death for months or even years past the point. It also depends on how the person with AD behaves. My mother was violent, aggressive and trying to escape. So somewhere where 24 hour care was available was essential. Some lucky few stay at home the entire time. It all depends on the many variables.

    As for guilt, with time, it subsides. I get little flare ups now & again but that's to be expected. What has to be kept in mind is where is the patient going to get the best care. This becomes even more important when incontinence is involved and potential for falls, among other things.

    I think you should try to enjoy your father now and leave the worrying to another day.

    Take care,
  6. DickG

    DickG Registered User

    Feb 26, 2006
    Hi Kath

    All that you are feeling I have felt in the past 7 years, at each step down the rocky path I wonder if I can cope with the next stage and so far I have. I have reached the point where I no longer worry about when Mary will need to go in a home as experience has taught me that problems are rarely as bad as they seem from a distance, let tomorrow look after itself.

    We would all like a quick end to the problem at some time and then regret our thoughts, there lies the root of our guilt. Margarita sums up the way Il feel better than I could. I hope you feel better about your situation soon, you are amongst friends.

  7. connie

    connie Registered User

    Mar 7, 2004
    Enjoy today, who knowswhat tomorrow may bring.


    We do what we csn, when we can. As individuals we can only do what we can to help our loved ones enjoy today...........Yes 'today'. Who knows what tomorrow may bring, AD or not. I have learnt, from past experience, accepct today........tomorrow, well who knows.

    Always remember my Lionel's words, "today is as good as it is going to get" There is a lot in that.
  8. Nell

    Nell Registered User

    Aug 9, 2005
    #8 Nell, May 3, 2007
    Last edited: May 3, 2007
    As a daughter rather than a life partner it is possibly easier for me . . . . . ??????????
    Not sure about that, but think it must be even harder for the spouses.:(

    What I believe is that we (both ourselves and our patients) are better off if we give thought and possibly some planning to the future. I don't know the UK situation, but here in Australia, waiting lists can be quite long for residential or nursing care.

    If we just hope it won't ever come to that (either because the patient dies or because we are able to continue to care for them), we face the distinct possibility of a crisis which could force our hand.

    If a crisis occurs, we can have NO say about the person going into care and they might have to accept care we consider less suitable. Sorry to be so grim, but I really believe it is a good idea to visit homes and put the person's name on waiting lists, etc. so you have some control over the future.

    I truly believe that it is not always in the patient's best interest (and certainly not in the Carer's best interests) to struggle on at home after it has become a very heavy burden. Despite the guilt and anguish we feel about putting our loved ones in care, for many it proves (eventually!!) to be the best option for all concerned.

    If you feel you are reaching the stage where you can no longer care, I think it is wise and responsible to face the fact and start making plans for future care.

    Having said all that, I have NO idea how to avoid or mitigate the guilt and the anguish that goes with these decisions. Sorry!
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    You are quite right Nell. We should be prepared.

    As a daughter, I did visit homes, and have a place booked, and a contingency plan ready in case of an emergency. The emergency came and my mother was in the home that same night.

    As a wife, I wouldn`t know how to begin. I know I should at least start looking, but I also know it`s a long way away and not only is he not ready, but I`m far from ready.

    First he has to be able to accept home visitors, home carers, then he has to be able to accept respite. Then I might start thinking and planning.

    But my son, as a son, said I only have to say the word and he will start looking.

    But I`m not yet ready to say the word.

    With love
  10. blue sea

    blue sea Registered User

    Aug 24, 2005
    Hi Kath
    Such wise words from everyone, I haven't a lot to add. I'm sure all of us who have put loved ones into care feel an element of guilt, but there does come a stage for many where this is the only viable thing to do, for everyone's well being. I think you know when you reach that stage as it just becomes impossible to continue any longer without your own health breaking down or you realise that you can no longer provide the level of care that is necessary for your loved one to be clean and safe and looked after 24 hours a day. I think it's perhaps better not to think of this as a defeat, but simply as a recognition that another stage has been reached in the journey. Ironically the quality of the relationship can become better when the person goes into care , if things have reached a very bad stage, as you are no longer their jailor, their nurse, their 'parent' but can visit as yourself, the person who still loves them, no matter what. It is hard not to worry ahead but you will find the strength to deal with whatever the future holds.
    Blue sea
  11. kathm

    kathm Registered User

    Apr 26, 2007
    Thankyou all for such kind words,
    i think i too should have a contingensie plan, i am a social worker and i work with older people but believe you me it is very different when it is your family. I shall search the homes i know to find one that i would be truly happy with if the worst comes to the worst and we end up needing one.
    I love my dad so much and hope and pray that he is never saddened by what we may have to do.
    I shall continue to enjoy now, and be glad for the happy times we have, i should count my blessings not my losses.
    Thankyou all, onwards and upwards we go.
    Love and hugs to all who are sad or are struggling
    Kathm xxx:)
  12. Natashalou

    Natashalou Registered User

    Mar 22, 2007
    congratulate yourself

    When I read the posts from carers here I always feel humbled to the degree I have no rights to be here. I have not cared for my mother at home even for one day. She went straight from home to hospital to nursing home.
    My caring has been limited to visits, practical matters such as her property sale and finances, and yet Im still exhausted, overwhelmed and unhappy by it all.
    My mother is desperatly unhappy where she is and makes 100% sure I know it, unfortunatly this has the opposite affect to what she tried to achieve, and makes the already unlikely prospect of her living with me less likely .
    But those of you who HAVE taken on that role, short or long term, such as dear Margarita, Granny G and everyone else, I salute you .
    When the time is forced upon you to stop, you should feel nothing but pride at all you have done for your loved one.
    I can tell that none of you stop until you realise you cannot go on, not even for one more day.
    At that point, it is clearly best for you and also your loved one to lay down the burden.
    We are not saints, we are human beings.
    Never feel you failed, or let anyone down, you didnt, you have undertaken a mammoth task and are very very special people, who do what many among us myself included cannot.
  13. Nell

    Nell Registered User

    Aug 9, 2005

    Dear Sylvia,

    I can only begin to imagine the pain of having to separate from your beloved partner in this way. Looking at my darling husband (who is 13 years older than me) I shudder to think how I would begin to cope if he takes the same path as Mum.

    The fact that you have faced this same path twice, and continued to cope so brilliantly, is just one more reason I admire you so much.

    I can well understand that you are not ready yet, but when you are, do let your son do the looking for you - at least in the beginning. As the children of sufferers we find it hard to know how best to support our parents - as I'm sure you know only too well!! I know your son will want to relieve you of the burden as much as possible when the time comes.

    In the meantime, no-one could do a better job than you are already doing - so I fervently hope you can keep going forever - for both your sakes!!

    Fondest thoughts and best wishes.
  14. Nell

    Nell Registered User

    Aug 9, 2005

    What a lovely post Natashalou - beautifully said! Thank you.
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Natasha,

    Don`t ever feel you have no right to be here. Whether your mother is living with you or not has nothing to do with the fact that you are affected by her condition, and only want what`s best for her. That it doesn`t appear to be appreciated is not your fault.

    You have given a lot that is sound and understanding to TP. Your contributions are valued. Perhaps your mother doesn`t know your worth, but we do.

    With love
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Nell, thank you for your kindness.

    There are so many husbands and wives on TP enduring far more torture than I am. Partners who have cared for longer, who live with violence, incontinenece, lost mobility, lost communication. There are children too, trying so hard, and with such love, for parents who have become so vulnerable.

    There is no better or worse, only Alzheimers.
  17. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Everything has been said really - it is not for us to decide how and when the end should come. The guilt comes from 'not wanting the horror of the final stages' - we are normal for feeling that way. I also would prefer my husband to have a heart attack or something that would make his end less difficult for him.
    He himself has discussed this with me and clearly says he hopes he does not have a long and torterous death. Oh dear how I hope he gets his wish.

    What we all really want is a magic wand to take us back to the wonderful years we have experienced with our loved ones. The difficulty is to face the fact that that will never happen.

    So back to basic - we can only deal with today, if today is rotten the chances are that tomorrow will be better.

    Best wishes all Beckyjan
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    #18 Margarita, May 4, 2007
    Last edited: May 4, 2007

    Not that is not how I plan it when I first got help for my mother home visitors 2 years back , but that’s how its work good for me with my mother Sylvia .

    Natashalou thank-you for your words it does help don't now if this will be of any help to you , but when you said
    and when My mother go in to care home she is going to be just the same . I have to :) or I would cry From the sear frustration of her in not going to understand why , someone said yesterday that I should tell her that its because I am ill , sadly to say my mother would not of care if I was ill or not , and no matter how cruel that sound , its not really because she only had understanding of my brother illness , that is what she calls illness , all I can say is , I hate to admit it , but the only hope I have that she come around to it is say that if I don’t put her in a home I shall end up lie John (my brother ) .

    In a perfect world in her mind if she was like me , what I would do for my children she would understand the stress of caring, but my mother has always been a person who has only ever know herself though my father and I , ( if you can understand that )when I grown up and left home.
    My father done his own thing at home and my mother turn to my brother, for company and pop over to mine when my brother father wanted space from her. Sounds horrible maybe but that was my family. Of course we all dearly love her. Yes mum ruled the roost in our house she had a temper that could move the rock of Gibraltar :eek: :D

    She brought up her 3 brother sister up from the age of 12 ,because her mother got ill , put her sister pay for her to be educated to become a nurse when she qualified , her sister **** her of at 18 and meet a man 25 years older , so the anger that she could not control the situation , so anger got rooted from they and then her mother dieing died , say no more :rolleyes:
  19. Taffy

    Taffy Registered User

    Apr 15, 2007
    Dear kath, I am at that place you fear so much and indeed it is a very distressing time, sincerely I hope you are spared that ordeal. My advice would be to look around well in advance, place dads name and just play it by ear, you always can defer.Please dont be like me and bury your head in the sand. At the support group I attend dementia is referred to as been tidal, never imagined, as in TSUNAMI!!! (LOL) Hope it is all smooth sailing for you. Taffy.
  20. J@ne

    J@ne Registered User

    Jan 10, 2007
    me too

    I feel just the same Kath. Isn't it good to know we're reacting normally to an horrible situation?

    My dad is still pretty okay - just very tiring and tiresome at times but not at the point yet where he needs care. But that's easy for me to say - I don't live with him. It's going to be down to my stepmum who does and I dread it coming.

    I share your feelings - I rang my hubby tonight (I'm spending the week with dad to give stepmum a break) and said I wished AD came on all of a sudden overnight so people didn't have to go through this awful nibbling away of their mind and personality and the rest of us didn't have to watch and cope.

    Peter Ignatieff (sp?) wrote an account of his mother who had AD and I think it was him who described it as a bereavement without a death? Somebody correct me if I'm wrong. Anyway, it is. It's like a loss with no closure. At least a death, terrible as that is too, has a closure and an end. You can mourn and move on. With AD you mourn and carry on.

    But today in particular I've been thinking lots about the good things - oh yes! AD has its advantages believe it or not! For example, I feel a lot closer to my dad now than I have ever been. All my life we were at war. I could survive about a day before we ended up bellowing at each other. Now, the AD has robbed him of the worst of his bloody mindedness and my fury and rage have disappeared. And because he's so vulnerable, I'm devoting so much to trying to care and support him. And because his ability to discuss and debate have pretty much gone, I show him so much more affection that I ever could prior to the AD. And I laugh and join in with his appalling jokes now, and enjoy his enjoyment instead of cringing. It will cut me to pieces when it comes, but I think I'll have to try to focus on how much better it will be for him to have round the clock care and from people who aren't worn out and wound up like his overstressed family.

    Also today searching for some envelopes, I found my dad's ancient writing case and it contained some letters that my sister and I wrote to him when we were about 5! He's kept them all these years and I never knew! AD gives me free reign to poke about like this (or it will when/if we're appointed receivers for him :rolleyes: ). Spurious good point, I know.

    If it were to (or does) happen that he slips away first, I'll be both relieved and devastated. I'll feel guilty whichever way it goes.

    So Kath, I can't say a darned thing that will alleviate the guilt and the conflict and the loss, but I can say I'm right there with you and I know everyone here is feeling for you and your dad. Look after yourself.

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