1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Well after weeks of blissful calmness, its happened again, I've fallen apart. (Told ya I'd be back when it happened, not if it happened!)

    I don't know if the headaches triggered me falling apart, or Dad's condition triggered the headaches, or if the headaches are due to a drop in the 'happy' chemicals in my brain, or if Dad's condition just makes me miserable. But last week I was coping just fine, was coping better than I had for 2yrs and I managed to feel that way for over a month, but this week I started to feel a twingeing of pain in the left side of my head again, it got worse as the week progressed and today I've had the day off sick and feel like someone's taken a cricket bat to my head. Along with all that for the past few days I felt myself getting increasingly miserable about Dad again. Finding myself crying after visiting him, crying driving to work, crying at night in bed.

    Which came first, the chicken or the egg? I have made myself an appointment with the doctor but I know they are just going to put it all down to stress...but why was I sooo okay for the past month and a half??? The other alternative is that I am depressed....I can live with that, if it is constant....but why was I so okay for a month and half????

    My husband must be so tired of all the drama I am always in the middle of. I am so sick of being the looney. And it don't half scare me that being such a looney ain't that far away from sitting in Dad's seat at the old folks home! :eek:

    Dad's condition hasn't noticeably changed in the last week or two..but I do find myself this week screaming silently in my head...how long can I bear this?? I don't want him to die, but I can't stand seeing him like this and knowing where he is headed.

    I said to my husband today, that I swing between feeling like I'm a complete and utter loser because I am not coping, (and I know I'd be the first to tell anyone else who said the same thing that they have every right to feel like they can't cope) but then when you think about it, its kind of like seeing your loved one getting hit by a car, but in slow motion, where you see the injuries being inflicted one by one, bodily and mentally, where you are just screaming inside 'Nooooo', where you feel like you are pushing every muscle and tendon to breaking point, pushing your body to get there in time to stop the impact, but all the while knowing that there is nothing you can do, your loved one is already dead (and as I type that I say 'No, no, no' to myself nonetheless) that this is all for nothing....and to top it all off this is the slowest slow motion in history!

    The one recurring theme I hear in my head when I think about Dad's condition these days is the very boring but very honest emotion that, 'This disease sucks'.

    Oh and as for those that point out the good side of things, that at least we get to say goodbye, at least we get time to make our peace, that another family member could be gone tomorrow and we wouldn't have had the same opportunities....I say....

    This isn't the long kiss goodbye, its the long nightmare of asking 'are u still there?'.

    Just like every one of us has a chance to say our goodbye's to every other person in our life every day, 'just in case' they die tomorrow, I don't feel I've ever had a chance to say goodbye to dad. I lost him suddenly on the first day he was diagnosed...parts of him had already gone by then, I have never known since that first day 6 almost 7 yrs ago if he was still there enough to fully comprehend what was about to happen, what was already happening. And I'm sorry, but I think most ordinary folk, just don't say goodbye when they've been told they have a terminal illness that will take years to kill them. At first you hope that a cure will be found, then you hope that it will happen slowly, then you hope that he won't keep going down hill so rapidly like he's on a slippery slope to hell, then you hope it will be all over quickly, then you hope that you can just manage to keep coping for as long as this drags out.

    I saw Dad the other night in a moment of possible clarity he saw me arriving at a distance, and when he did, he who no longer talks said 'Oh, oh, oh' and then he smiled and then he laughed, and he smiled and he laughed some more, and he looked sooo happy and soo happy to see me, oh so happy (I had been absent from visits for two days). And, it absolutely broke my heart. I didn't get to say goodbye, you don't just say to your Dad, 'Hey Dad, so seeing as we both know you're dying, lets have a few kisses and hugs, say our goodbyes now and then everything will be fine, you can go on your way and I'll cope just fine.'

    Instead I sat there the other night, stroking Dad's hair while he still had a glimmer of the fool's grin on his face (still feeling the happiness of seeing me), telling him about every day life, and telling him I wished he'd hurry up and get better so we could just get out of this place.

    I love him so much, and it was wonderful to know I could make him so happy (though there is also some doubt, that maybe it was just the drugs and he would have reacted the same to anyone that day - and that thought bites too) but here I am today, writing on here again, trying to muster the strength to get myself to visit him again.:(

    I miss my Dad so much.
  2. jc141265

    jc141265 Registered User

    Sep 16, 2005
    P.S. Sorry for being so glum.
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Nat

    It is a roller coaster, with mostly down swings!

    I can relate to just about everything you say.

    Hang on in there!

    SOPHIE Registered User

    Jan 20, 2006

    I couldn't have worded it better, its not the long kiss goodbye, my Mum is not there any more even though I love her more than ever.
    Sometimes I burst out in tears for no apparent reason, we just all keep going the best we can.

  5. 1234

    1234 Registered User

    Sep 21, 2005
    mixed feelings

    Hi Nat
    Was pleased when i saw you back on TP but that was selfish of me, because it m eans your down again, just wanted to let you know i think about you and your dad often heres a x for you both
    love Pam
  6. daughter

    daughter Registered User

    Mar 16, 2005
    Hi there Nat, I wanted to answer your post because you were there for me when I fell into a black hole a little while ago.
    You said it. I wish I could think of just one thing to make you feel a little better.
    When I'm sitting in Dad's home, surrounded by people talking nonsense, wandering aimlessly or urgently trying to go some place (who knows where?) I sometimes get a surreal feeling - who are the crazy ones here? Is it them for not really being here, or me for being here?

    Bruce, a roller coaster implies exhilaration and speed - I think of it more like a plodding fairground carousel.
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    ...I'm thinking of the one - long since gone - known as the big dipper, in Barry Island, South Wales. My grandma used to take me there often.

    The dips scared the life out of me.

    Exhilaration and speed may have been there, but I remember the fear! After all, I was 8 years of age at the time.

    The fear continues...:(
  8. Libby

    Libby Registered User

    May 20, 2006
    North East
    Hi Nat

    Gosh, I wish I could put how I feel in words like that

    I went through a terrible stage of not being able to stop crying - dad dying, mum going into a home - work was just so manic - I ended up working 7am, til 8pm, getting in the car and crying all the way home. Not just tears running down my face, but huge great sobs. Looking back now, I know it was stress and although I'm much happier at work now, theres still times when I think of Mum and dad and the tears start again. But I no longer have the heaving sobs, so I feel as though I'm definately making progess!

    Even though I'm in my forties, I feel as though a big part of my life has ended. I don't mean that in a depressing way, but the relationship I had with both mum and dad basically came to an end when dad died - so in some ways it felt like a double bereavement. I'm so glad I'm not an only child - if I was, I think I'd still be crying now.

    I don't think you'd be normal if you didn't feel glum!

    Take care

  9. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Nat,
    I don't think we can ever get used to this situation, so predictable and unpredictable at the same time ......
    I've grappled all day with my own ridiculous mood swings, yesterday was a 'good' day, today I've been angry about 'this', stressed about 'that', then bawling my eyes out because hubby said something about beautiful lady and I assumed/hoped he meant me, especially since he squeezed my hand at the time. I love it when he smiles, and it breaks my heart when he looks sad or scared. I am grateful for the time we have together, but sad that we can't spend it in a traditional 'purposeful' way. I feel mentally and physically exhausted, but if anyone bothers to enquire, I put on a brave face and tell them that it's not all that bad - - - we all agree that this disease sucks, but we also know that there is all sorts of heartache all around us, and apart from 'accepting what we can't change' and 'changing our attitude towards something we can't change', your own motto seems as good as any to me, and I think of it often!

    Chin up, girl, think yourself a virtual hug from me and go get a real one from your husband. You will bounce back and visit your Dad with the traditional big smile, and he will know that you are there for him, however hard it is for you both.

    And I do hope you can get rid of that headache - I have migraine attacks and they are so infuriatingly debilitating!
  10. bel

    bel Registered User

    Apr 26, 2006
    Dear Nat

    I also could not of put it better i agree with what you have said i wish i could express my self as good
    my thoughts and love i send
    Love Bel x
  11. connie

    connie Registered User

    Mar 7, 2004
    Dear Nat, love you, thinking of you, wishing for whatever you are wishing.............cannot say more. We are all in this together - and YES IT SUCKS.
  12. Áine

    Áine Registered User

    that rings so true Nat! ........ and often it's impossible to ask if he's still there ...... and it changes every day .........

    thanks, and hugs

  13. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Thanks Connie!
    ....but: that's the whole problem - I don't know myself what I would wish for (apart from wishing this bl***y disease would go away). There are many moments when I would just like to be free to do something spontaneous, a walk along the canal, a concert or theatre trip, a messy day with the grandchildren, or visiting my elderly parents who live abroad (big dilemma!), even staying on at work for an hour to finish off a job. But I cannot reconcile any of that with the equally strong wish that my hubby may remain here with us, be part of our family, my 'other half'.
    Considering our age gap, it was always on the cards that I may end up on my own one day, and in theory I know I can cope - but that doesn't mean that I will/would get any enjoymentout of any the above things once they are attainable again.

    Let's be careful what we wish for, and get back to counting our blessings, it's better for the soul!

    Enjoy the sunshine - hope you and Lionel are making the most of your beach hut!
  14. shell

    shell Registered User

    Jul 2, 2006
    First time

    Hi Nat

    It's my first time on here and didn't know if this could work for me, but your story was the first I read and it really touched a cord. Especially the bit about sitting in the home. That to me seems the hardest bit - am I really making a difference by visiting Dad! Would he know/ care if I didn't visit? But yet that is all I can do!

    How can I keep going with this situation when there may be no more improvement - Dad is only 62 so could live years with this life sentence!

    Hope things are getting better for you - esp the headaches! We can't keep being strong when we don't feel well or other bits of our lives aren't so hot - so take care of yourself! You are important also!

  15. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Shell
    Welcome to TP.
    I think I asked a similar question myself a few weeks ago, and got the reply well it might not make a difference to your mum (in my case), but it matters to you. None of us know what our loved ones feel when they are in the more advanced stages, but I am sure that they still respond to love. And we are the only ones that can love them as parent/child. It doesn't matter whether they know us or not, we love them, and if we can bring warmth and love into their lives, then the visits are worthwhile. If we were not to keep visiting, what are we saying about their worth? Sorry, I am thinking aloud here.
    How long has your dad been ill?
  16. jc141265

    jc141265 Registered User

    Sep 16, 2005
    On whether visiting makes a difference...

    I have to say I believe that it does, even if Dad doesn't know who the hell I am...he is getting human touch, human attention, human stimulation, he is getting to interact with another human being although most of the time it doesn't appear to be normal interaction, it is a type of interaction nonetheless, even if he's waving his hand at my face or yelling at a reflection and turning to me...he is relating to another person.

    Scientific studies have proven that children who get no human interaction at a young age are affected mentally and often die young as an apparent result of this lack of an emotional connection. I do believe my visits are good for Dad and the other inmates as well as they get to gossip or complain about me, or even interact with me in their own ways as well!

    The bigger question is, why am I doing something that possibly prolongs Dad's life (i.e. interaction with me keeps him stimulated, gives him hope, gives him an emotional connection to hold onto)when all he has to look forward to is possibly pain and most certainly death and it most definetly makes my life harder to visit and to prolong the time that I will need to keep the visiting up? I worry about this sometimes, that what is wearing me to the bone, will cause my having to bear the situation even longer, but no matter how hopeless his case is, I cannot leave him for dead.

    I guess I am one of the ones who mess up Darwin's theories of survival of the fittest...where the rest of the pack sees no sense in trying to carry the weak and dying ones as long as possible, but abandons them for the greater good...I and most of you, cannot leave them. Guess thats what makes us humans, not animals, eh?
  17. rummy

    rummy Registered User

    Jul 15, 2005

    no good side!!

    I have often wondered if this was God's way of making me able to let go of my Mom. We have always been so close and such great friends. She was my role model, my strength and my compass. I don't know how I would have handled her dying suddenly and loosing her from ok one minute to gone the next.
    When my daughter was a teenager, she was a huge challenge. I thought that God surely made teenagers obnoxious so that you wouldn't be crushed when they left home. Indeed, the day I took her to college was more relief than heartbreak ! ( She is a wonderful human being now !)
    So perhaps if one has to ask "why" that could be an answer. I think I can let go of Mom now. I want her whole and back to herself and if that has to happen in the next life then I can accept that.

    Surely doesn't make this part of the process easier though ! I am in a dark place right now too and it is hard to find any light at the end of that tunnel. But we shall persevere, what other choice is there really. Nat, I hope your headache goes away soon and that their are brighter days ahead for you and everyone on TP.

    Hugs, Debbie
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Oh yes! I absolutely agree with this.

  19. Faith

    Faith Registered User

    Jun 18, 2006
    You are my words

    Every thing you have written I ditto.

    My head aches are driving me insane (mine are on my right side) and I feel that I am going to sink...........and I want to be so strong for dad and my children and of course my wonderful mum. Who needs head aches that make you feel sick when there is too much to do..........

    The famous words of Footprints comes to mind..........and I am really pleased someone has been carrying me these past months because I could not have made it so far alone.

    Bless you and thank you for putting into words everything that I too am feeling.


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