ok, this is getting very hard

Discussion in 'ARCHIVE FORUM: Support discussions' started by zonkjonk, Apr 23, 2008.

  1. zonkjonk

    zonkjonk Registered User

    I have copy/paste my email to a longtime friend with no dementia knowledge...
    Joe is my FIL who I met before my DH...
    Joe was born in yorkshire...emigrated to australia
    I met him at a local darts match a few months before i met his son, and married him. Joe was my only dad after my real dad died 2002.
    this is how it is

    maureen just rang, joe is back in hospital
    debilitating back, chest pain
    unable to walk more than a few metres
    intermittant nausea, vomiting
    weight 58 kg
    gall bladder surgeon to be consulted
    unable to take strong pain meds as they will compromise his liver function
    shadow or spot noticed in lungs
    full CT t/row
    joe is saying he doesnt give a toss re liver...just wants the pain relief, but was refusing to go to hospital
    needs must...he is in.
    now I am thinking he will die before my mum.
    I havent talked about mum for a while but since her "turn" she is unable to walk,talk,pee,(on a catheter) losing weight,
    she can still eat mush and only has bowel motions assisted by drugs.
    morphine patches, and from what I have read (gotta love the internet)
    last stage dementia could possibly go for years ..up to 3 if average

    well, I doubt my coping abilities.
  2. connie

    connie Registered User

    Mar 7, 2004
    Jo, what can I say. So very sorry to read your post.

    Can quite understand how you feel, although I am sure you will find the inner strength, to continue coping as you have done so far.

    I have to say the unknown length of time this illness runs is my biggest fear.

    Tell me I will need to care for xxx or yyy and I can do it. I know what is expected.
    The unknown, that is something else......and as for average....well.

    All this , and now dear Joe. He does sound so poorly. I do sincerly hope things improve soon. For him, for mum, and for you Jo. Take care now.
  3. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007


    What a time you are having of it. You will cope, although I know that just now it feels as if you will not, if only because you keep going and talking to people.

    Life sometimes throws more at you than is comfortable and you want to bury your head in a blanket and shout no more. I would if I was dealing with what you currently have on your plate.

    take time for yourself and chat on here. Feel that we care with you and accept what support you can from those about you. It is so hard explainging to those who have not been there.

    Thinking of you


  4. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Dear Jo

    It sounds like you have all on at the moment with Joe and mum. No wonder you wonder whether you'll cope. I bet everyone on here, if we allowed ourselves to look ahead, would be wondering "how on earth am I going to cope". But we all do cope one way or another and I reckon we are great. At the moment, with you being faced with the crisis of Joe's hospitalisation, don't think ahead at all. Just deal with one day, half-day, hour at a time.

    Sending love and best wishes to you and your loved ones.

  5. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Jo

    You must be feeling absolutely desperate. You've been worrying about your mum for so long, and now you have Joe to worry about too.

    Joe must be in such pain, and I can understand his wish to have relief, never mind what it does to his liver. I hope they can get all his investigations done quickly, so that at least he can be comfortable.

    Your mum sounds to be very poorly too. Yes this stage can go on for years, and that's something I too am facing. You're going to need all your strength.

    Who's taking care of Jo? Please keep talking to us, we want to support you.

    Love and hugs,
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I`m so sorry Jo.

    Now you and your husband have two parents to break your hearts.

    Gall bladder trouble is extremely painful, but as long as his other conditions are not life threatening it can be controlled with a fat free diet. My grandmother lived till she was 91 with it.

    I know nothing about his other problems, but one step at a time Jo. Don`t give up on him yet.

    And now your mother.
    You have posted often but not said how bad her deterioration has been. I don`t know whether or not it helps you to offload but there are so many people here for you, I wish you would. You have been one of the first to offer support and it would be good if you could accept it too.

    Perhaps it hurts too much. This long slow decline is as painful as anything could be. You have always struck me as someone with inner strength. I hope you can find it from somewhere.

    With love xx
  7. zonkjonk

    zonkjonk Registered User

    thanks for all your kind words and support.
    my MIL was so upset on the phone last night :(
    We also have mothers day coming up soon here, which doesnt help.
    and next thursday is the first anniversary of my friends suicide

    Joes has been deteriorating over several months. last time he was hospitalised he had a grossly enlarged liver
    he also has scerlosis(sp) of the liver
    he has had so many tests, and no improvement to his health.
    they wish to operate for the gall bladder, but are waiting for his overall health to improve as they are concerned about his ability to cope with surgery.
    maureen was trying to get him in the car to go see the liver specialist yesterday but she couldnt get him to the car.
    so she phoned the doctor and doc insisted that Joe had to go back to hospital.

    That just about sums it up.
    I was/am coping with mums deterioration (inevitable that it is)
    and I dont talk about it much any more with anyone.
    I just hope Joe is going to be OK
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Jo, I really am sorry you are suffering so much.

    Joe sounds in a bad way, stating the obvious I know, but following your post yesterday, I thought his gall bladder was the main cause for concern.

    And I understand you don`t want platitudes about your mother.

    My heart goes out to you.

    Love xx
  9. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Jo, please don't bottle it up. You have so much sorrow in your life just now, and we'd like to support you, if you'll let us?

    Love and hugs,
  10. zonkjonk

    zonkjonk Registered User

    sylvia, hazel...
    update this evening...
    Joe has a lung tumour. Lung biopsy next thursday to determine malignancy,
    they cannot operate on the gall bladder now because the tumour takes precidency (sp)
    my overloaded brain forgot to mention his emphasemia (sp)
    apparantly I cant spell any more
    Its not really a matter of "bottling my feelings up"
    its just that there is nothing more to say or do re mums decline.
    yes it tears me apart,and my mum is now "gone" forever. I lost her the day she didnt know who I was "thought I was a nurse? carer?"
    a few years ago, I could have posted everday about some new worriesome thing about mum, but now, I know where we are heading, and I know there is no escape.
    thanks for your kind words
    I follow your posts re:lionel and appreciate your input as to how long 7th stage dementia will last.
    I find the need to speculate, as it helps me cope.
    mum was definitive 7th stage back in november, I thought she was dying then....the NH rang me to tell me they were sending her to hospital as she was "not responding neurollogically" sp again!
    I acknowledge that it could be years and years yet
    I know we are all different, but mums decline has been relativly fast...probably 7 years from ...is there something wrong with her to now
    I dont want to lose my dear Joe
    already the phone is incessant, the brothers and sisters are all ringing each other
  11. andrear

    andrear Registered User

    Feb 13, 2008
    Hi Jo

    My heart goes out to you, but please, please keep talking and don't stop. Don't keep it inside - just let it out, I know that sounds stupid but I kept mine inside for a long time and it takes even longer for it then to come out.
    Love Andrea
  12. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear dear Jo, you sound in absolute despair.

    Joe does sound very ill, let's just hope the tumour proves not to be malignant.

    Take care of yourself, and give your lovely daughter a huge hug. And please don't worry about spelling, as long as we know what you mean, that's all that matters.

    Love and hugs,
  13. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands
    Hello Jo,

    I've been so full of my own woes have not been reading about others for a while.
    You're going through a rough patch..I feel for you.

    And we're all here for you..no words of wisdom from me...

    But I do care..

    Love gigi xx
  14. zonkjonk

    zonkjonk Registered User

    me again...
    I can spell much better when I havent been drinking too much white wine!
    what I was trying to say, in my roundabout way, is that I have come to terms with mums dementia.
    I have spent many many hours surfing the net, reading everything I can, as I am sure, we all have.
    I have gone through the denial, gone through the anger, gone through the self pity, raged against the disease,longed to have my mum back,cried and cried buckets of tears at losing her.
    I just dont feel strong enough to do all that again with Joe.
    but we cope dont we, cause we have no choice.
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Jo, just try to accept, if you can, what life throws at you. There is no point in fighting against it. :(
  16. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Now ain't that the story of all our lives!:eek:

    How is Joe today?

    (Spelling'g perfect, by the way!:D)

  17. zonkjonk

    zonkjonk Registered User

    thats what I mean sylvia and hazel, I have come to acceptance with mum...but is been a long hard journey.
    my dear dad, who was diagnosed with inoperable stage 4 brain tumour, and died 11 days after diagnosis, THAT was really rough
    my friend who hung himself, I doubt if his children , wife , family or friends(DH & I) will accept. thats just too hard.
    I have just spent the last hour reading about lung cancer (just in case)
    my poor DH is nearly illiterate and will depend on me, if the diagnosis is positive.
    So, at this stage I have survived the "he is really sick, what is wrong...OMG he is dead" my dad
    the sudden shocking incomprehendable death (friends suicide)
    the horrendous ravaging of my mum by dementia...but still clinging to life.
    Hazel and sylvia... I am not seeing Joe now till tommorrow, the waiting game commences...wait for the bronchoscopy next thursday, wait for the pathology results...if it is positive, wait to hear treatment options etc etc

    thanks ,I know, but one must rage against the disease,for a while at least, I know when I am fighting a losing battle,and I know when to give up
  18. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Jo

    I hope you didn't think I was making light of your problems. I wasn't, I promise you.

    I know that, far from becoming punch-drunk, each new blow serves to multiply the ones that have gone before. And you've had more than your share Jo.

    Rage or accept, we're here to support you, love,
  19. zonkjonk

    zonkjonk Registered User

    #19 zonkjonk, Apr 26, 2008
    Last edited: Apr 26, 2008
    not at all making light of my problems...friends that can inject a bit of humour are precious to me.
    I have had quiet evenings out when I am crying and i have brilliant friends who tease me , jolly me along.

    I had a text message from one of these friends once...
    "hey Jo ...come around for a drink, we all want to see you cry again!"
    sounds awful, but these girls mean well, keeping me connected, and they dont run away from my probs, they sympathise, but dont let me get too down.
    the best kind of friend to have...one who distract from my woes and makes me laugh.
    like you.
  20. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Thank you Jo. I value your friendship too.

    It sounds as if you have a lovely bunch of friends, and that's worth a lot in this cruel world.

    Hope things are OK today.


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