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Life-limiting illness

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caring for my lovely mother with inoperable brain tumour

9 replies

agathac31 · 10/08/2014 08:16

she was only diagnosed last week - in hospital at the moment.
It was all so sudden - she'd been being a bit forgetful but then suddenly she had a seizure then off to hospital and ITU.

she's now on normal ward but her short term memory is gone: she'll keep asking what's wrong with her over and over again, and then she'll ask why no one told her; she'll get up to go to the loo then not be able to find her way back to bed. Apart from memory her personality sort of intact - she looks at photos and gives appropriate comments and she tells us to take her credit cards home in case they get mislaid etc.

Still waiting to hear back from Dr re possible treatment - they've already ruled out surgery so I'm guessing maybe radiotherapy? She's currently on steroids in hospital to reduce swelling. It's a grade 4 giloblastoma so there might not be long left for her.

My question/ worry is what should happen to her when/if she leaves hospital. she can't return home as my father not capable of looking after her (he much older than her and not well himself and non driver).To visit her is also a 7 hr round trip for me.

So I was thinking the 2 options might be some sort of hospice or living with me? I have 2 young children but am sahm so could keep an eye on her. Our house is small but we have managed to have people stay in past (small spare room).

Has anyone any advice on caring for relatives at home? I just want to do my best for my beautiful mother. I love her so much and when I am not with her I just worry all the time that she is confused in hospital. also does anyone know if there's any hope of short term memory improving.

OP posts:
somuchtosortout · 10/08/2014 22:57

Imreally sorry. I have no wise xowords but am bumping this for you.
My uncle was at home for a year after having an unsuccessful operation for brain tumor.

In many countries it would be completely normal to have a relative at home.

But in these circumstances I'm not sure. Don't underestimate the toll it will take, especially as you probably don't even be able to leave her for 10 Mins. Not compatible xith small children unless hou have a large family at hand to help.

Then would you want to expose your children to this.

However if this is what you really want in your heart don't let anyone put you off, you don't ever get the chance to do it again and you will make it work.

Hopefully someone with better advice will post soon.

Give youself time to think. My mum has an incurable cancer and every decision weighs so much.

somuchtosortout · 10/08/2014 22:58

So sorry about the typos. Hope it makes sense!

agathac31 · 11/08/2014 21:52

Thanks so much for your reply - just talking about it helps a lot (I know mumsnet not real talking but having someone else's response/opinionh is nice).

In my heart I have decided that when she is ready for discharge she will come to live with me. If it goes wrong then she'll have to be moved later, but I feel at the moment I want to try caring for her myself.

it's terrifying though.

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somuchtosortout · 11/08/2014 22:52

I don't believe we are sent any challenges in life that we can't cope with.
I think giving it a try while keeping an open mind is a good idea. I've got two threads going with dilemmas linked to my mum's cancer. Mumsnet got me through an awful night earlier this week.
I bet there will be others caring for relatives at home on here.

somuchtosortout · 11/08/2014 23:25

Sorruposted too soon. Was trying to say it is aamazing how much it helps talking about it on here!
As everyone said to me, be kind to yourself. And follow your heart.

somuchtosortout · 11/08/2014 23:26

Hate typing on this thing!

Dontlaugh · 11/08/2014 23:38

I am so sorry you are dealing with this. I have 2 siblings with cancer but not terminal.
One is brain tumour but prognosis ok.
In your situation you need to get v v practical, harsh as that sounds. Have you spoken to home care team? Or hospice home team? There needs to be a plan in place if you are home caring.
Do you have a downstairs toilet and bedroom? Both are important for care.
Your children will adapt, with support and information. Illness and death are a part of life. Hard as it is.
Hope it works out, you are amazing for taking this on.

agathac31 · 12/08/2014 13:45

We don't have a downstairs loo - maybe I could get a stair lift? Mum can climb stairs at moment though.
I'm not amazing - I love my mum so much that I can't really bear to be parted from her at this time,
Thanks all got your replies
I just looked up times to wait for 1st outpatient appt - 36 days - bloody hell !

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agathac31 · 12/08/2014 13:46

I haven't spoken to care teams yet they are meant to be ringing me bavk

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