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Original poster

end stage brain tumour, anyone been there with a loved one?

88 replies

Inarush · 25/05/2009 20:48

my fabulous dad has a couple of months to live with end stage brain tumour. It's harrowing. Please, has anyone been there with aloved one? If so, I'd love to hear from you for advice and strength. Also, anyoner who has good advice on palliative care, hospice v home, steriod management?

OP posts:

onlyjoking9329 · 31/05/2009 12:52

how are things?

rachandabi · 05/06/2009 20:49

any1 there? just joined,my mum has grade4 brain tumour and its hell at the moment xx

Original poster

Inarush · 08/06/2009 15:14

hello rach. I'm here. Things are hectic are the mo as dad in hospital. I'm low and should be in till 6pm. Hope to chat. I can imagine some of what you might be referring to. xxx

Also, anyone there who doesn't mind the emotional side? I feel awful.

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Original poster

Inarush · 08/06/2009 15:34

hello rach. I'm here. Things are hectic are the mo as dad in hospital. I'm low and should be in till 6pm. Hope to chat. I can imagine some of what you might be referring to. xxx

Also, anyone there who doesn't mind the emotional side? I feel awful.

OP posts:

Original poster

Inarush · 08/06/2009 16:27

I would love to say that we've had amazing support, but it has not been so. We had marie curie for a while but then were told that would go down to 2 nights a week ( when dad needed someone with him all the night and hardly slept). We hit crisis points at several times for things that I felt could have been better anticipated by the GP. I wont go into all the details.

It's left me battle scarred, because it's felt like a battle esp with the GP. We've experienced things that needn't have been so traumatic. The condition is bad enough.

Dad landed up as an emergency admission into a small hospital, pall bed on general ward. We're taking turns to be with him round the clock. I feel he needs us there as he would otherwise be alone and is often in need of reassurance.

The nurses are great and do everything to make dad safe and comfy but obviously don't have time to address his emotionl/social/spiiritual needs or help us to do this.

As a family we are each dealing with our emtions in very different ways. i tend to express my emotion and talk about how i feel. I'm the odd one out with this. It is lonely I have to say. I'm giving out so much being with dad at night when i can and trying to follow all his care plan etc to be sure his needs are met.

Anyone elso had this?

OP posts:

Original poster

Inarush · 08/06/2009 19:21

I have to go now. Hope you, your mum and the rest of the family are as ok as poss,Rach.

Will check postings when home in a couple of days.
x

OP posts:

snorkle · 08/06/2009 20:34

I'm sorry to hear this inarush (((hugs))). It's a horrid illness which can be a little akin to alzheimers towards the end, so prepare yourself for a tough few months and take each day as it comes - your inner strength will be there for you when you need it I'm sure. My mum died of it 14 years ago - like some others here, it wasn't possible for her to stay at home towards the very end, even with my dad, aunt and night time nurses there for her, so she spent the last couple of weeks in a cottage hospital (which provided hospice care). Getting the drugs right was a bit tricky and somewhat trial & error it seemed, but mostly she was as comfortable as could be.

snorkle · 08/06/2009 23:43

Inarush, just read your last post. Hope that your dad has had a good couple of days when you get back to this thread. The night cover was withdrawn for my mum after a while too as the nurse couldn't cope. I know there were issues with drugs but don't remember the fine details as I was mostly the other side of the country 7-8 months pg and with a 16month old in tow, so only able to visit every 2-3 weeks.

toomanywrinkles · 08/06/2009 23:52

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toomanywrinkles · 08/06/2009 23:54

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ShinyPinkShoes · 09/06/2009 00:05

I nursed my Dad through his last 13 weeks.
If you'd like to chat off-board please send me a CAT message and I'll do all I can to support and advise you.

Sorry that you and your family are having to go through this x

MatNanPlus · 09/06/2009 00:39

One of the things we found helpful when looking after my mum was that we had talked about funeral arrangments so it was how she wanted it to the letter whereas with my FIL we had to guess and it felt strange planning it.

Do get all the help you can, night care from Mac Nurses helped my stay sane as i got 5 hours uninterrupted sleep 3 times a week and it was a blessing.

Original poster

Inarush · 09/06/2009 14:08

Thanks for that,really great to get support. I'll try to arrange the CAT thing pinkshoes. We are hoping that Dad will be able to stay at the cotttage hospital to die.
Thanks again.

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