Exhausted

Hi,  I have posted a few times giving updates on my husbands condition, but 3 weeks ago we were told that there was no more treatment available and things were coming to an end.  The hospital and hospice were wonderful, supplying us with equipment and we now have carers coming in four times a day,(although I'm cutting that back to twice).  During the day he sits in an easy chair, chatting, drinking tea or just napping, we have equipment for me to move him around and I can cope.BUT then comes bed time,  we have a hospital bed in the downstairs bedroom and I sleep on an air bed beside him, well I say sleep, it's as though as soon as he gets into bed his personality changes.  He calls out for me, I crawl off my air bed and ask what I can do, 'nothing' he says, I sort out his bed clothes 'stop doing that', I reset his pillows 'you're  making things worse'.  I crawl back into bed and he starts again.  On average I'm up 7/8 times a night, and can do no right. Except when I get him to the loo, or clear up after violent diarrhoea, and even then it's my fault.  I love him dearly and can't stand the thought of losing him, but I'm exhausted and am now struggling to cope.

Vent over, thank you for reading this.  I am strong and will get through this.

  • Hi there ...

    Oh my, even nurses have to have a break ... your caring 24/7 .... no one can keep that up ... now its time to ask for help through the night ... and if you get a nights sleep, your batteries will charge back up, for the next day ... it sounds like you've been running on empty for a while now ... you can break too .. then that helps no one ...

    Maybe you don't want to think of hospice care, but they are so lovely there ... or Marie Currie, are there for this situation ... you can't do this alone ... there's a time for everything ... now reach out to everyone you can .. to ask for help, isn't failing .. it's just saying you can't do this alone ... look on Marie Currie site .. even your Drs may / should put you forward ... please don't carry on the way you are ... you've been amazing to get this far ... this is heart breaking all round ... sending you a vertual hug... Chrissie  

  • Hi petal. 

    I've different circumstances similar problems. 

    My darling wife, has parkinsons and Alzheimers also had mini strokes. Has hospital bed downstairs and I've a camping bed as near as possible. We've a commode right beside her bed. She can't walk at all so i support and move her i managed to get a small wheelchair for moving around the house, she has a motorised recliner in living room and another commode. She's on laxative so not always time to move before accident. And like you plenty of movement in the night. 

    If your wondering why we are on a cancer forum I'm on palliative care since February 2016, i promised my Mrs I'd look after her when she got old she's nearly 14years older than me or she wouldn't have married me that was over 48years ago.

    Hoping other will join you to talk we know it helps. 

    Billy 

  • Hi Chrissie,

     

    I have been refered to Marie Curie and are hoping for cover a couple of nights a week.  I've just arranged to speak to the district nurse as Trevor finds the mattress on the bed very uncomfortable, if he is more comfortable I hope he will sleep better and therefore so will I.

     

    Thank you for your kind thoughts.
    Laura. Xx 

  • Hi Billy

     

    we are indeed in similar situations,  Trevor is 18 years older than me, which is just as well as I couldn't see someone in their 70s lifting their spouse around.  
    I wish you well, and thank  you for your comments 

    Laura

  • I'm 69 my wife is 83 I've tried for help from macmillan twice everyone says we should get it, but because my wife doesn't have cancer we can't get any support from them, we have carers from the council coming in morning to wash my wife i also have to help because carers aren't allowed to lift anybody, so i lift while they wash. If we paid we could probably get something sorted but there goes our pension.

    I sometimes wonder why i started working at 15 and worked till i had to retire to look after bren full time. It just seems waisted sometimes.

    Don't worry just me having a rant this time. 

    Billy 

  • Hi Billy,

     

    do you have a district nurse visit?  she should be able to get you some extra help, also speak to your local hospice,  ours has been very helpful.

     

    Take care

    Laura

  • Petal. 

    District nurse comes every 6 months mainly to check for bed sores should have a psychologist nurse coming after virus. Tried all sorts we seem to fall through the cracks.

    It's as i said before bren hasn't got cancer and I'm caring for her, so they consider we manage. If i get really Ill things get moving then. 

    ..     Billy 

  • So things are drawing to a close.  Trev had one good night sleep, and then last night was shocking.  I moved him from bed to chair at 4am where he has slept on and off since.  Very concerned as his temperature has risen, so GP came round and said he would get District nurse to come round and put in a syringe driver.  We all know know what that means.  The GP was very nice, but I just dissolved when he started talking about how I can get a death certificate.  I asked the question as Trev had never wanted to,  hours to days was the answer.  Since then he has eaten half a dozen strawberries, had a little to drink, taken another two paracetamol and had a seizure.  Last night there were more tears as he admitted he was frightened, and so did I.

    I am literally sitting here watching my darling partner of 32 years die.

  • Oh Petalgirl

    just sending you the biggest of hugs xx

  • my heart goes out to you. If youre anything like me you will continue to put up with demands made as you love him. I have a terminally ill daughter who is currently in a hospice and has been there for the last week. I have pangs of guilt because I feel it should be me looking after her but sometimes we need a break to recharge our batteries. Actually she is very happy there and the staff are amazing.