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Original poster

support thread for people who are about to lose a loved one

383 replies

saint2shoes · 23/01/2009 11:19

my dear old dad who is 81 has a aggresive Brain tumour.
The doctor has just pretty much said there will be no treatment apart from steroids.
he has got bad really quick. in October I have a picture of him looking OKish(my sm died in early September) Then at Christmas he looks so ill.
he is in Hospital and looks so small and frail.
I know I am not alone and could do with talking with othere people who are going through stuff like this.
I know a lot as my mum died of a brain tumour when I was 18.

OP posts:

Iamnotme · 28/01/2009 08:31

MaryBS I am so sorry. (sorry about my name but 2shoes is in hiding) if you want to off load, I am here.

MaryBS · 28/01/2009 08:50

Thanks. I'm relatively OK about it, need to stay strong for the family. DD has been crying, DS is asking lots of questions about death (and has Asperger's - so may be more upset than he is showing). They have both gone to school though. DH is off to see his mum today, give her support.

LilRedWG · 28/01/2009 09:17

Mary, I am so sorry for your family's loss, but am so glad that it was peaceful - as Squonk says, most important.

As for crashing the thread, well if you have then so have I. We can crash together. x

Iamnotme · 28/01/2009 10:49

oh I am glad other people are posting on here(although woul dbe much better if we didn't all share this) It really helps me.

Sidge · 28/01/2009 10:57

2shoes I have only just seen this thread. I am so so sorry you are losing your dad too

My dad died on Sunday from a glioblastoma grade IV (the worst type). It was so hard as brain cancer takes the person away before they have even died.

Mary - I am so sorry your FIL has gone

LilRedWG - thinking of you, and so sorry you are on this hideous journey too. It's like being part of an awful club isn't it?

MN is truly fab though, there is always someone here to offer love and support and hugs. Sometimes I find it easier to offload to a 'stranger' on here than my friends.

LilRedWG · 28/01/2009 11:06

Oh Sidge my love, I am so so sorry. Much love. x

fryalot · 28/01/2009 11:24

sidge - so sorry

I know what you mean, 2shoes, it is good to know that we are not alone and others are going through similar things, but I wish none of us were in this position

Iamnotme · 28/01/2009 11:37

oh dear hospital has just rung, I think dad must be driving them up the wall he want to speak to my brother, I am going in soon, but who whats to place bets, that it will be about his mobile phones. He keeps asking for a user freindly on!! he has 2 one is an old style nokia very easy to use, I set his numbers up on speed dials and printed a sheet of(big numbers and laminated it) so if he was stuck he could ask someone to do it for him, but he still can't do it............

fryalot · 28/01/2009 11:40

give him a list of the numbers written down, so he has to key them in each time? My dad hasn't got used to the fact that phones have a built in address book and he gets his actual paper address book out every time he wants to ring someone on his mobile.

2shoes · 28/01/2009 16:13

well that was fun!!
they are chucking him out.......
he has not slept and I only got to see him for a bout 1 mins as he was so tired, so now the talks begin about where he goes, bless him he wants to go back tothe care home he was at, but db reckons it is all wrong for him. the sw was a pain and In the end I said that she would have to meet with my brother friday.
I think(and so does db) he needs a nursing home. so keep your fingers crossed.
(back to 2shoes now as feeling a bit brighter)

fryalot · 28/01/2009 16:49

they are chucking him out??

gah!

A nursing home seems to be the way to go - what is the procedure for getting him in one?

My dad has an appointment with the nurse woman today. She has given him loads of info about chemo but not whether it is a viable option or not. She said that he is entitled to claim benefits as he has less than six months left to live (although she did say "well, you never know, we could be wrong" ) so he's a bit down today. Appt with oncologist a week on Friday.

fryalot · 28/01/2009 16:50

had not has

2shoes · 28/01/2009 17:11

well they have told him he won't be having an op as it will be too dangerous, so they will just keep him on the meds. so i presume there is not much more that they can do in hospital.

he can't walk as he is so weak, and sittting makes his back ache, so imo he will need full care.

2shoes · 28/01/2009 17:11

oh your poor dad hearing that.

fryalot · 28/01/2009 17:52

surely if he can't walk, he will get full care?

LilRedWG · 28/01/2009 17:55

Oh guys, I'm sorry you've both had a bad day.

2shoes - are the Macmillan nurses involved? If not, maybe they should be.

Squonk - Grr at the nurse.

My Dad was a bit better today and was reading when I got there. Mum not too bad but is very very swollen.

fryalot · 28/01/2009 18:00

lilred - I don't think I know what's wrong with your mum? I know you posted earlier that she was ill, but I don't recall seeing what with... Is the swelling affecting her mobility? Good that your dad was perkier

LilRedWG · 28/01/2009 18:05

Mum had emergency surgery at the end of August to remove the majority of her small intestine. This has resulted in chronic diahhoria, weight loss, malnutrition and water retention and she has been housebound ever since.

She was hospitalised last week as her odema got so bad that she cannot weightbear, let alone walk and the fluid had spread to her lungs, which obviously is not ideal. GP called an ambulance.

fryalot · 28/01/2009 18:07

oh shit, lilred!

that must be a huge worry on top of your dad! So are they in the same hospital or even the same ward?

LilRedWG · 28/01/2009 18:20

Dad is at home - nothing more that hospital can do. The Mac nurses will step in as and when he wants/needs them. My sister, her husband and teenage son live with them though so he has 24 hour care.

Mum is in hospital I'm guessing for the next few weeks. I'm looking forward to Dad being well enough to visit her.

fryalot · 28/01/2009 18:22

oh it must be awful for you all, having them in separate places, and both so ill!

LilRedWG · 28/01/2009 18:39

It's not the best, but there's nothing we can do - which is what I find hardest.

fryalot · 28/01/2009 18:40

yes, I know that feeling!

It's almost like they're the children, you just want to protect them and make it all better.

But a kiss on a bumped knee won't do it

onlyjoking9329 · 28/01/2009 19:15

Can i gate crash this thread?
i am not about to lose a loved one, but i may be able to help those of you that are.

MaryBS so sorry to hear that your FIL died.
Sidge sorry to hear your Dad died from a GBM4
that was what killed my DH.

if someone has a terminal diagnosis, or advanced cancer as they prefer to call it, then they can claim DLA under the special rules, we did this for Steve, they automaticly get high rate care but not always high rate mobility, steves was sorted within a week.

if you can get an oncology social worker or a Mac nurse then they can do the forms, the person who is ill doesn't even have to know about the claim.
Also if you get a Mac nurse they can often sort out daycare at the hospice or admission to give carers a break, the hospice were very helpful to us.
"shoes sorry to hear that your dad is so poorly.
LilRed sorry you have your mums health worries on top of your dad being so poorly, a break is a good plan.

LilRedWG · 28/01/2009 19:16

OJ - I do think you are wonderful you know. xx

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