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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:

fryalot · 28/01/2009 19:18

OJ it is very kind of you to come and give us some support and advice.

Please don't feel you're gatecrashing at all, you are more than welcome.

My dad is currently refusing a mac nurse as he "doesn't need one" I have tried to suggest that perhaps his wife may feel like she needs some support, but he is quite dismissive of the idea. I mentioned it again today and said that she could probably do the forms for him, but I think he's sort of thinking that if he has a mac nurse, or fills out a form for DLA then it makes it real

onlyjoking9329 · 28/01/2009 19:37

you will make me blush Lilred
if i can help then i will, i have learnt a few things over the last 2 years so i may as well get something positive out of it!
right the mac nurse, Steve wasn't having a Mac nurse, no way, why did he need one when he wasn't even poorly, course he mostly forgot it was terminal.
what steve did agree too, was the Mac nurse coming to see me, cos i needed someone to talk to, steve used to hide upstairs when Debs came to vist!
having Debs around was the best thing i could ever have done, we have had debs for 16 months now, steve died 8 months ago but she still vists every two weeks.
i think the thing is when someone is terminal it is incredibly hard to talk about it with them and everyone around you is probably struggling with their own feelings about it all so you may not be able to talk to them either. You need to talk to someone
Debs is the one person that i know i can really really be honest with as i don't have to protect her at all.
i think people think that the Mac nurses just do nursing so if they don't need nursing care then they don't need one.
Debs sorted out med changes, DLA, talking to others to get equipment, Debs was here within half an hour of steves death and sorted out making phonecalls that i couldn't deal with, bless her she even had to spend time with the MIL. i would urge everyone to get one, its up to you how often you see them

fryalot · 28/01/2009 19:44

thank you, oj. I will pass all that on to my dad and step-mum.

2shoes · 28/01/2009 21:24

Oj thanks for the info, I will gt DB to check that out.

LilRedWG · 28/01/2009 22:48

Dad's Mac nurse/administrator is sorting changes in meds etc. It's a great help to us all, as Dad has some control but doesn't need to worry any of us with sorting it for him.

fryalot · 29/01/2009 11:00

morning.

How are you all today?

Other things that have been playing on my mind (dd1 playing up, ds being ill) seem to have sorted themselves out somewhat so dad is my only major worry.

I have slept properly for two nights on the run now, I was beginning to think that I would never have a decent night's sleep again...

LilRedWG · 29/01/2009 12:06

I'm glad you got a good sleep Squonk. x

2shoes · 29/01/2009 15:30

glad you slept well squonk.

dad phone earlier, all in a panic, said he had to talk to someone urgently. I asked about what and it was things like getting a blue badge sorted I am glad I stayed calm, I rang his P.A (lady in his village who is cordibating thingas, as people were running arround all doing the same thing) and it turns out dads mate is going in.
Oh Ray is amazing, not only has he been a rock for DB, he is looking after all the finacial stuff(at dads request) and he goes in loads and he is in his 80's!!I was sooo relieved.

2shoes · 29/01/2009 15:30

co ordinating

fryalot · 29/01/2009 16:33

it's good that your dad has so many people visiting him and all pulling together to help out.

had a [weak smile] at the thought that he needs a PA to co-ordinate everything!

2shoes · 29/01/2009 17:13

well we had to do something, he was ring round his freinds asking them all to do the same thing and they were all falling out lol, so DB arranged for everything to go through one lady.

2shoes · 29/01/2009 22:19

oh Ray rang me, seems he knows a good nursing home, his dad was in it, so hopefully that will work out. I just want dad out of hospital, he is so unhappy.

LilRedWG · 29/01/2009 22:23

I hope that works out 2shoes. It is so horrible to see someone you love so desperately unhappy.

fryalot · 30/01/2009 09:49

fingers crossed that this works out for your dad, 2shoes

2shoes · 30/01/2009 09:55

well it is the big meeting this afternoon and I am not going!!
DB and Ray are.
I don't feel guilty either!
DB will not let me get a word in edgeways as he knows everything! Just spoke to him on the phone and he just talked over me and made it sound like I was thick.
so I can not see the point of going(please tell me I am right lol) I aggree with all that db is saying, he just seems to not believe me.

LilRedWG · 30/01/2009 10:13

You are right. Do not feel guilty. One of my elder sisters (I'm the youngest of six) has been the one to attend all of the meetings/appointments with my parents. It really does make sense to have one point of contact with the medical staff.

Take it easy on yourself. x

2shoes · 30/01/2009 10:26

tbh he has made me feel like shit. it is like he gets wound up so takes it out on me.
later if the meeting goeshis way he will be all nice again. but I don't know if I can do it anymore.

fryalot · 30/01/2009 10:29

2shoes - if you agree with everything he is saying then there is no need for you to be there.

You are right to stay away.

And he should think about what you're going through as well as himself. Have you yelled at him and told him that this is just as hard for you as it is for him?

LilRedWG · 30/01/2009 10:33

As long as you agree with decisions he is making then go with it. I agree that maybe he needs to be made aware that you are going through this too. It is so difficult and has such a crap effect on families.

2shoes · 30/01/2009 10:37

He said that it was thanks to him that this meeting was happening!! I said but I saw the sw, "only cos you were there" was his reply!!!

oh I love my brother but I just wish he could realise the mess my head is in.

2shoes · 30/01/2009 10:37

squonk he would have to stop talking to hear me yell

LilRedWG · 30/01/2009 10:40

TBH I had major issues at my sister 'taking over' at the start but now, even though I feel a little left out, I realise that it's for the best. She has grownup children whereas I have a toddler, she lives with them, etc etc. Still hurts though that I'm not the one doing stuff, so I empathise.

2shoes · 30/01/2009 10:45

I don't mind him dealing with it. but as he is only here at the weekends, it is me who see's people during the week, then he arranges to see them and what I have said is discounted.
yet if I say something he goes into one about living far a way and working!!
he is worried about the money sied of things, I understand that, he worries that if dad can't pay for his care or sell his house, they will go after db for the money(we have no money or house).
TBH as I tried to tell him, we need a time scale.

LilRedWG · 30/01/2009 11:03

Dad in bed today. His chest is really hurting him, he can't breath and he's very confused. I'm sat sobbing as I type this. I can't stand it.

Sidge · 30/01/2009 11:48

Oh LilRed I'm so sorry

It's the hardest thing in the world to see someone we love hurt so much. Is he at home? Have the community nurses been in? He may need some oxygen or inhalers.

Hugs to you.

(And to you, 2shoes)

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