Another day of just existing

3 minute read time.

It's nearly 8 o'clock.  I've been up for two hours having been woken at 6 o'clock by Gemma wanting to go outside.  Not that early but it felt like the middle of the night since I only got to bed at 1 o'clock this morning.  I can't seem to drag myself to bed any earlier because my head is going round and round and I need to unwind.

So, what will today bring?  I think I can guess.  Another round of nurses trying to do their best for John when all the time I'm screaming inside because I know what their best will mean.  If he's free from pain, he's sleeping because the drugs have knocked him for six.  Then, when he wakes up finally, he's confused and annoyed that he's slept the day away and still feels so weak and ill. 

And I have to watch him go through it all; putting up with his irritation, watching over him in case he tries to move around on his own and falls over or in case he lights up a fag and sets light to himself in the process, trying to find something to talk about other than his wretched symptoms and this bloody awful disease that's eating him up inside and destroying any quality of life he has.  This is a living Hell!

Last night he said he wished he could go to sleep and never wake up again which broke my heart.  I know exactly where he's coming from but hearing those words coming from his lips was more than I could bear.  I couldn't do anything but put my arms around him to try to comfort him.

I broke down yesterday in the chemist in Sainsbury's.  I took in a prescription for his pain meds and the chemist questioned the amount and the dosage and asked why he needed so much.  I took a deep breath and explained and then started blubbing.  When she was done questioning me, I scurried away to a corner of the store to compose myself and carried on shopping.  What more could I do?

His daughter is wonderful but she can't be here 24/7 and when she is here he snaps at her because she fusses over him so.  I try to tell him that she's only doing it because she loves him but he says he feels suffocated.  She gets so upset and I end up having to comfort her as well.  I feel emotionally drained and the tears are never far away now.

At least people have got the message and the phone doesn't ring so much.  My really good friends keep sending me texts to remind me that they're thinking of us and my very best friend is coming to visit today.  I know John will be pleased to see her but I've warned her that he may be very sleepy and say some strange things.  I know she won't mind and I'm looking forward to seeing her.

Little Gemma is being so good and yet I feel sorry for her.  She's only two years old and should be having fun.  Instead she creeps around like a little ghost or curls up next to John so that she can watch over him.  I try to make it up to her when I'm able to take her for a walk but yesterday I was too tired and Jo took her.  I must make the effort today because I know it will cheer both of us up to get out in the fresh air for a while.  Even then, all she wants to do is get home again to check up on John.  The other day she wasn't even interested in seeing her best friend Huck and he was terribly miffed because she just ignored him.

So, the end of another sob story!  Sorry everyone.  I know a lot of you have your own pain which is equally as bad as mine so don't feel you have to read all this rubbish if it upsets you. 

x x x

 

Anonymous
  • FormerMember
    FormerMember

    Oh Madge

    Yes it upset me to read, and i shed a tear or two but thats because I feel so helpless. I wish I lived near to you Madge then I could help you with more than just a few words and good wishes.

    I know how hard it is for you, my mum and I did the same 20yrs ago with my dad. Sadly only for 2 1/2 weeks as dianosed so late.The tiredness, the forever being on alert it goes on and on. You need time out Madge, even if its just walking Gemma round the bloke, do try to get out but if you feel a nap would benefit more then have one.

    The carer is a very importent person in a patients wellbeing (a thankless job at times too, first in line for them to rant at), so you need to re-charge and keep well.

    Who could you talk to honestly from the bottom of your heart if we didnt have this fantastic site. We all wish you both well, you are in our hearts so when you feel the upset and the pain, so do we. Think thats called friendship and love and family. Cant give you a real hug but who knows, I may turn up one day just to do that :)

    Take care Madge, lots of love hugs and kisses

    Shaz (((((((((((XXXXXXXXXXXX)))))))))))

  • FormerMember
    FormerMember

    Oh Madge, I'm sorry it's so hard for you all at the moment. There's nothing I can say to make any of it any better but I'm thinking of you, John, Jo and Gemma and sending all the positive thoughts I've got. I hope he has a better day today and you can spend some quality time together, Vikki xxx

  • FormerMember
    FormerMember

    Dear Madge

    I wish I could make you a cuppa and sit you down just for a few minutes!  Can't add anything to what Chaz and Vikki have said.

    (((((((((((((( HUG )))))))))))))))))))

    All the very best

    Georgia XXXXXXXXX

  • FormerMember
    FormerMember

    dear madge

    i read your posts with tears in my eyes as i can totally relate to how you feel and what you are all going through. seeing as my dad and your john were in the same hopsice im guessing we are not far away from each other and if there is anything i can do please just message me. sometimes it helps to share with someone not directly connected. even if its a walk with your lovely gemma

    sending u john jo and little gemma big hugs

    wendie x x

  • FormerMember
    FormerMember

    Hi Madge,

    Nothing I can say, I know exactly where you are and how you are feeling.  All I can do is send you and John Lots of love and ((((((((((hugs))))))))))).

    Caroline XX