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last weeks of life - Carers UK Forum

last weeks of life

Share information, support and advice on all aspects of caring.

my mum was given weeks to live in dec, then possibly months (she came home with palliative care for non- hodgkins lymphoma) then went downhill last weekend and they told us to stay around for 24 hours, then said she would go this weekend, then said yesterday said she plateaued, then said she downhill today....

I do understand it is not an exact science, but i don't think they (district nurse) quite gets the emotional roller coaster it puts me on.......

... my mum on liverpool care pathway... so we know she not long at all........

has anyone dealt with this up and down- ness?

I'm just going to try and take it one day at a time and kind of ignore them I think.

Hi Rache, been there several times unfortunatly, what the DN,s do not take into account, partly because they do not know the person like we do,is a persons inner strength. My step dad was like this, its very hard on you and other loved ones. Some times people rally and sometimes they do not. My heart goes out to you, all you can do is take it one day at a time. Take care, my best wishes to you and your family.

i had to drive up to middlesbrough when the mother in law was on her death bed on the pretense that she'd got hours to live,she lasted another 5 days,the family and the doctors and nurses couldn't believe it,people will only pass when it's their time,i suppose it's the same as a baby will only come when it's ready despite what delivery date you've been given.when i did home care i nursed a chap that lasted 3 weeks after the hospital had sent him home to pass in peace at home.
Funnily enough I've just been through that with my Dad.

Part of me wishes we were still going through it.
Hi Rache,
I know exactly how you feel, my Dad was diagnosed with untreatable lung cancer 19th july 2009, his care team told me it would be very quick is was so advanced, 4-6weeks maybe.
forward to 22nd August 2009, he was very poorly, but we had a birthday party for his 80th in my garden.
We lost him 30th Dec 2009, peacefully in his sleep. In between times he was hospitalised on many occasions, the doctors always telling us that the time had come.
It was an emotional rollercoaster that I wouldn't wish on anyone.
My Dad was a very strong soul, he decided he wanted to his grandkids for Christmas and he did.
Taking it one day at a time is the best thing to do
Sending (((hugs))) and strength at this difficult time
thank you for your replies, glad to hear from people who gave experienced the same thing. Her will has always been very strong!!! I think because she chose palliative care we kind of thought she wanted to die - but there's a big difference between not wanting treatment that you think won't work and will make you feel rubbish and mean you in and out of hospital (which is how she saw it)- and wanting to jack it all in.

I'm also struggling with feeling bad about some decisions we made... doing the "if only", maybe if we had...". I've talked to the DN about it and she assures me this would have happened anyway - but I'm not hundred percent convinced. I think the "if only" probably comes with the territory of caring...... but it is not easy.......... we didn't go to consultant appointment cos didn;'t feel she well enough - and did ask them to let us know if that was a problem and we'd try...... but i wonder now if we should have tried to make it............. hellish.

I understand too - that these days are still the good days - I'm not trying to wish them away - just get my head round things. the DN said my mum had gone downhill from yesterday but to me she obviously seemed more herself, better eye contact, more interest in things, determined effort to drink fluids........

going to take it a day at a time - a cliche but a good one xxxx

thanks for the support xxx great to hear about other people xxxx
Hi rache,

Been on this path with dear friends and relatives so often. My wise old Granny used to say that life was God`s raffle, and you were not going to die until your number came up.

Dad has been on this roller-coaster a few times, had his own eulogy written last time he went into hospital and we were given no hope, but 3 months down the line he is home and managing quite well given his catalogue of medical problems.

Every day I wake up expecting the worst and hoping for the best. If it gives you comfort to know you are not alone, you are amongst friends here on the forum.

Take care
OOOH, I can associate with your post.
A part of you wants them to go if they are suffering.The grief you are suffering now leaves you numb, it did me and then I felt bad as I had done my crying.My Mum was given 4 weeks and lasted 9. Every day was a bonus.My thoughts are with you.

part of me does want to let her go if she suffering - it was awful to think she might be at a plateau where she miserable, but actually she a bit more cheerful..... I get the feeling her mind understands that maybe she could let go/it is going to happen/rationally she doesn't want it to "drag on" (which is what she said before) - but there's another more instinctual part fighting to stay here.

and good luck to her.

I believe too that our Mums don't want us to worry, do you have a brother or sister ? I didn't and Mum and I never discussed her being soon to depart this world. I longed then for a sibling, someone who felt that gut wrenching feeling of desolation the same way as I was feeling. If the heart is strong she won't go without a fight, mine went on until the medication due to pain made her sleep more and more as the C took over.
HOPE is another feeling that keeps us going, as long as Mum has the fight as you say " good luck to her". In years to come you will be proud of her stamina.
Thinking of you, sending a big HUG.