when you have lost a dad?

Discussion in 'ARCHIVE FORUM: Support discussions' started by susan, Oct 13, 2004.

  1. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear All
    I have not posted for a long time as i feel you all are dealing with dear family who are at a stage that my dad was at 2 years ago. I get the feeling that none of you want to accept that this is where you are going? Sorry to sound so hurtful but although my dad has no communication at all now and sleeps for 20/24 he is still my dad and myself and others are surely in the same situation. i am all for giving support to those that are facing the nightmare of where me and my family have been, but we still hurt and i am supporting a mother through this awful time after 51 years of marriage - to the point that she can not face seeing him this week curled in a ball yet again.
    Please remember that this awful disease goes on and on and that close family suffering goes on and on - except for the brothers and sisters that seem not to care!
    Yes at a low point and where does it all end?
    What do you do when visiting someone in this state - i take fresh flowers every week, i cuddle my dad but he doesn't know i'm there!!!
    It would be so nice if my sister or brothers visited - the last time my sister went was 6 weeks ago, my brother even longer and my youngest brother has never been in 4 1/2 years!!
    Well my winge and tears are over - why i feel like tjis tonight = who knows - maybe because mum won't go and i will have to go by myself. Thanks for listening Sue
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Susan

    There's a difference between accepting something and implementing it, I think.

    I'm sure we all realise where things MAY go, but we have to live for the present to ensure that our loved ones are not written off prematurely. Once we say to ourselves "they are now completely gone, though still with us", our attitude changes, and we may no longer visit, etc.

    The challenge is to know when we have completely lost them mentally, and many of us may not accept that is the case until they go physically, too. I just don't know what will be the case for me. Many times I have asked myself "is it now? am I serving any purpose here?" and each time Jan has given some sort of reply.

    Some visits, all I do is cuddle her and I get no response - she stares sightlessly forward. Then, after an hour, I say to her "I need to go shopping now", and suddenly there will be a tiny response. A smile. Or an "oh yes". Or something else. She was there all the time.

    If I get to the time when I don't get those responses, will that mean she doesn't WANT to respond? Dunno. I do know that I will take it that she wants to, but can't. Call me stupid, if you like.

    My greatest fear is that of a vegetative condition lasting many years [this was the case for one early onset resident at Jan's home - 10 years of vegetating].

    My greatest hope is for an immune system breakdown after 'flu, something that frees her quickly.

    Whatever the case, who would want to lose out on the few moments of pleasure and communication now, prematurely? Besides her family, that is.:mad:
     
  3. Jude

    Jude Registered User

    Dear Susan and Brucie,

    Right now I am just living for the moment and trying not to think too much about the invevitability of the future...... Today is quite difficult enough without worrying about what will be, although I know it will come all too soon.

    Jude
     
  4. Chesca

    Chesca Guest

    Dear Susan

    I can HEAR the 'low' in your voice and don't think you are being hurtful, but you are hurting. So, very very much because you love so very very much.

    I have come to accept the inevitability of Mum's condition and if ever I am feeling deluded, all it takes is the daily visit to her nursing home to serve as a reminder. Many of her co-residents are now confined to their beds, helpless, and sleep most of the day, resting in their own worlds. Occasionally one of these rooms will be empty........I don't ask why, I know.

    My situation is similar to yours only in reverse. I am also looking after Dad, trying to help him through his own grief at losing Mum to AD, who is devastated after 59 years of marriage and puts a heriocally brave face on it to help me too. I never get used to it - the loss, sadness, sense of waste of a life - but I have to try varying coping mechanisms otherwise I'll go under emotionally. Sometimes I cope better than others - last night I didn't. Called in to say night night and give her a kiss while she had a little supper and just as I was leaving up came the tear surge and down I went. Just when I think I'm getting used to it a little click of the switch and I'm not.

    You visit and take fresh flowers because that is what you know you want him to have, because you love him. Who knows about the siblings' reasons? You'll never win the fight with them, we all have the same at some time or other - mine are coming home today for what I cycnically refer to as the Royal Visit but at least I know they will go and see Mum on daily basis for the next four days and give me some time to regroup, emotionally.

    But please never feel you are alone in your suffering on this site. Although we may not SEEM to be aware of the destiny of our loved ones, never for one moment believe it. We're just coping the best ways we know how, be it ranting and railing at the social services system, or laughing at our own follies for a little levity. We too, all of us carers, are fully rounded human beings not just a satellite of the carer outreach system. And we mustn't forget it - and you mustn't either - otherwise we may just go under ourselves.

    My kindest of wishes go out to you and your Mum - herself trying to cope with it in her own way, it's just so overwhelming.

    Love
    Chesca
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Susan, I am so sorry you feel so down. It is a very difficult time and you can't help feeling angry when other's don't seem to share your concerns. This is one of the worst of illnesses in my opinion. Like you, I have spent hour apon hour alone with my Mum, wondering if she understood, then suddenly she would smile or say something or sing a little to her music and I just knew somewhere in there, she still recognised and appreciated things. The morning of the day she died I picked her a bunch of sweet peas, I held them to her nose and she sucked in the smell just as she always had done. I too had to bouy up another family member, Mum's sister. When the funeral was over, my aunt said, "well I suppose that's it now". I asked what she mean't and she said "now my sister is gone my life is over too". It is hard right now, trying to be strong for her when I am really just a blubbering heap too. We all feel as you do, thats why it is good to air and share here. Our loved ones may not be able to tell us, but I am absolutely sure that they understand we care. When I was working, there was a dear little old lady, in her late nineties, had to be fed etc. Bedridden for many years. I had just passed my massage exams, so, after giving her a bed bath as usual, I gave her a very gentle body massage. Her frail little limbs relaxed, she smiled at me. As I collected my things to go, she said really clearly "Thank you", this was a lady who never comunicated as a rule. Needless to say, I gave her a big hug and kiss and shed a few tears as I left. Yes,she was in her own little world, but they can be reached in all sorts of ways, this is why so many of us including you, just can't throw in that towel. Love She. XX
     
  6. Jude

    Jude Registered User

    Dear Sheila,

    Physical contact works wonders doesn't it?.

    If Mum is feeling weepy, I usually sit and hold her hand or stroke her back. She also loves having her hair brushed. It's very soothing for both of us.

    Jude
     
  7. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Susan
    sounds like it's time again for my parrot call"DAY TO DAY.
    I always believed in living day to day and helping anyone where one could along the way
    The situation now is different AD hit us ,all our plans for the future went to the wall together with our dreams.
    Now I try to be patient with my wife ,not always easy,and to give her every thing that will give her pleasure,if only short time.
    It's only some times that I think about the future, and the unavoidable end, which will come one day,I only hope she will always know me, and still tell me she loves me, and know that I will always love her,and that when that time comes I hope she will be released quickly and not suffer any longer
    all thats best to you
    Norman
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
  9. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear all
    Thank you for all your replies - yes i was feeling very low - i think that every time i visit - several times a week i expect a little response - over the last 3 weeks there has been nothing - Dad has not even gripped my hand. My brothers and sister, have to put it bluntly ****ed me off - not even finding time to ring mum!
    Chesca and Sheila - you hit the nail on the head - i am hurting and it's because no-one seems to care except Mum and me.
    i feel a little better and its thanks to all of you, and Brucie and Norman - i can see where you are coming from - i've been through that struggle - sadly found the site too late to gain support that you all offer each other.
    Take care stick with Norman's saying DAY BY DAY.
    Love Sue
     
  10. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear sue,I really do feel for you and your parents,i care for my mum who lives with us and every day is a battle and part of that battle is that we know that soon we could end up in your posistion but we made the choice to start this journey and we will see it to its end. on this journey we have needed support and we always will till the end comes because it is just to hard without an outlet like T/P were i can seek comfort support and encouragement also to release anger and frustration and even laughter at the silly things we share that have no sense or reason at all.I feel you are feeling very alone and i for one would like you to keep in touch remember people do care. storm
     
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Susan, so glad you posted again. Storm is right, we share all sorts of feelings on here. Please keep posting and we will always be here for you. Love She. XX
     
  12. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Storm
    Thank you for your reply and yes we will all see it through to the end, with or without help from close family. I still can not get my head round why my siblings are so distant and how they seem not to care. Sis says she is busy - aren't we all? Yet when we have a crisis she is the first to moan saying enoughs not being done!!!
    Thanks for listening - rather tired long week take care love sue
     
  13. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear All
    I have just been reading your posts again on this thread. And I am sitting here feeling sorry for myself, (the midnight blues)

    Margaret will not allow any physical contact beyond what is absolutely necessary, such as helping her into or out of the bath. If I try to give her a cuddle she pushes me off and will only let me comb her hair under sufferance.

    She will occasionally hold my hand while we are outside but as soon as we get indoors be it home or shop or cafe she immediately throws my hand away not just lets go of it.

    Even if she needs a plaster or bandage for some slight damage I have great difficulty in putting it on as she is pulling away or pushing me off.

    As for conversation no matter what I try to talk to her about she either makes some irrelevant comment or antagonistic remark.

    If I don't initiate a conversation all I get from her is the repetative query "are we going out now" followed by "It's Friday the 15th of October isn't it", or whatever the day is. She only knows the day and date because I made a large pepetual calender to put on the mantlepiece to try to stop the repetition of "what day is it"

    So we just keep soldiering on as Noman is so fond of saying Say by Day.

    Sorry just feeling bit down be better tomorrow.

    Barraf
     
  14. Chesca

    Chesca Guest

    Dear Susan

    No, you haven't arrived too late; a little later than you may have wanted/needed but we're all the better for having your company, so don't go away too soon.

    Try not to reason why, where the siblings are concerned. You will never be able to make people think the way you do, that's what makes you special to you. Try not to reason it out, it is a fight you will never win. It may be because of a geographic distance, emotional distance, whatever..... but you can't make them think and deal the way you might want them to.

    You'll end up resenting them with a hate and comtempt and using all your energy that could best be used in other directions - possibly to regroup your own emotions? And I speak as somebody whose siblings have arrived in their usual duo after many months and one of whom tonight was so cold and detached about the whole business as to make me want to leap across the room, lift her from her complacency and blast her into the really wild blue yonder. Knowing that I could get on here and vent my spleen saved my energy. I will redirect it into humour, not always to everybody's taste, but nevertheless my way of dealing with it. And, I do have to say, people on TP are very tolerant and understanding of my bitterness and cynicism which translates finally into a laugh at myself which makes me a little lighter!

    I'm glad you're here and do think of you
    Chesca
     
  15. Chesca

    Chesca Guest

    Dear Barraf

    And why wouldn't you be feeling sorry for yourself? It's not a hanging offence. The person you love is rejecting every gesture of love, support and, despite your best efforts appears to resent your every word! All the self conditioning of acceptance - 'it's just the illness' 'she doesn't mean it' blah de blah - means nothing because, despite those efforts, there you are still trying to live some kind of normality amongst the abnormality and it isn't working.

    Don't you be too hard on yourself. What is being expected of you is the impossible and somehow impossibly you're muddling through. Be proud of yourself with a metaphorical pat on the back, small consolation that it is. And, yes, feel sorry for yourself any time you like, we're all here to one way or another cajole ourselves out of it, however. And tomorrow, on you will go, because that is who you are, you love.

    Kind wishes from a sometime fellow insomniac
    Chesca
     
  16. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi all,Sue chesca is right dont try and work your siblings out it just makes you more angry and frustrated,but it is not just your family icould spit at the thoughtless attitude of my mum in laws sons they caused a hell of a fuss when she was taken into hospital and first diagnoised we have seen 2 of them twice in the past 2yrs she has been living with us,my attitude now is they are not worth wasting my energy on.We just have to get on with it and do whats right for us. storm
     
  17. Jude

    Jude Registered User

    Dear All,

    It really isn't worth it. My brother left here 6 weeks ago promising faithfully to phone at 4pm every Sunday to speak to Mum and Dad. Haven't heard a word since......

    Jude
     
  18. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi everyone

    the more I read about useless siblings the more I appreciate being an only child - you just have to get on with it. A few months ago Mum was bemaoning the fact that no-one goes to see her and said she wished she had had 6 children to wich I ruefully replied that from what I gathered I would still be the only one to care! Thankfully I have some great friends and who help me through and fellow parishioners at our local church who also support me. Like Sue I know only too well where this is going to end and sometimes wish people wouldn't ask how Mum is ,...because what can I say in all reality? Like Bruce I pray everyday that the end comes soon and from an infection or system breakdown.

    regards

    Geraldine
     
  19. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Sheila
    Thank you for your reply - i am feeling calmer today - a hard week at work got the better of me. Hoping to get away for a few days in half term down to Devon - see a dear friend from Uni days - think maybe thats what i need.
    Went to Dad today still sleeping - seems he's only awake for an hour after breakfast and a little mid morning. They don't like us visiting AM as they are doing all the bathing/ caring - but i think i will take the bull by the horns and go tomorrow morning.
    Apparently he even eats with his eyes shut - well he always liked his food - doing it on remote control - with help from excellent carers.

    Dear Geraldine
    i always thought my siblings would be around to help with mum and dad - ha ha. It's almost as if my brother has read this page - he appeared today to see mum - would not go to dad could see no point - i could use a really foul word here but i am sure all are aware of what it is without me typing it!!!!!
    At least it gave mum company for the day. He just can't cope with what is happening. Good job we all don't think like that.
    Mum is not coping at the mo either she finds it so hard to see him like this.
    Well i am going to have a nice glass of wine - Dad has turned me into a red wine addict - never drank the stuff until he went into hospital 4 1/2 years ago and even though he's in a good nursing home now - i still enjoy a couple of glasses every night.
    Take care Sue
     
  20. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    #20 kate34, Oct 17, 2004
    Last edited: Oct 17, 2004
    hi there, lost my dad too

    Hi Sue, how are things? thinking of you in this difficult time. As you say, we are all at different stages and have our own experiences and feelings. My Dad died in May this year and I miss him dreadfully at the moment, but I am glad he is at peace, his last weeks were awful, yes I think he was comfortable, but the look of misery on his face was more than we could bear at times. I dread to think what he was going through. The memory of his face and the way he looked in the days before he died will stay with me forever.
    Regards
    Kate
     

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