My brother is dying. What do you call this period of just hideous horrible waiting?

(70 Posts)
MissM Mon 22-Sep-08 13:19:36

After people die it's called grief. What is it called now? Because in my opinion it's worse - you spend time with them and chat to them and don't know if it'll be the last time.

I put a message on here in July saying that m brother's cancer had returned despite a bone marrow transplant and lots of treatment. He feels now that he has very little time - he is in lots of pain and finding life a struggle. He got married three weeks ago and it was the most amazing weekend. Every time I'm with him I wonder how I will survive without him in the world - how the world will go on without him. He has everything ahead of him and a happier and more fulfilled life than the majority of people I know.

What is this horrible horrible time, and how are we supposed to deal with it?

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norksinmywaistband Mon 22-Sep-08 13:21:22

I have no answers for you, but couldn't let your post go past without me saying my thoughts are with you and your family.

I am hoping someone who can offer you some comfort and advice comes along soon

MissM Mon 22-Sep-08 13:23:56

And another thing - how is it that complete strangers can be so kind (thank you norks), but people who are supposed friends are too afraid to even ask me how he is? I feel like saying 'you're not going to bloody catch it if you just bloody ask!'

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PoorOldEnid Mon 22-Sep-08 13:25:23

can you spend the time putting together some sort of memory book or scrapbook of photos together

and look through it with him before he dies?

MissM Mon 22-Sep-08 13:27:42

He doesn't want anything like that. He wants to talk, a lot, but he also wants to get on with the business of living while he still can. He loves his work and what he does day to day and wants to do everything he is able to until it becomes impossible. Maybe photos later, but right now he just wants to live in the now.

Thank you for the suggestion though. It is a nice one.

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whomovedmychocolate Mon 22-Sep-08 13:27:44

Technically it's called 'end stage management' but that's not going to help you. It's horrible isn't it? I spent a lot of time nursing my granny and just wishing she would get on and die because she was in such pain and we were all so tired.

I'm sorry your brother is dying. He sounds like he has so much in his life than he's being ripped away from

You can only take one day at a time and try to concentrate on the time you have left together.

It may be worth talking to MacMillan Cancer Care as well, they did wonders for me, just listening and telling me that everything we were going through was normal.

GooseyLoosey Mon 22-Sep-08 13:27:46

People are afraid to say the wrong thing so they say nothing. If you asked a friend if you could talk to them, I bet they would be relieved to know what you wanted and needed.

My heart goes out to you and your brother.

janestillhere Mon 22-Sep-08 13:27:46

The weird thing is when you look around at everyone else going about their everyday business - you want to scream at them DON'T YOU REALISE WHATS HAPPENING TO ME???
But you don' do just get on with it. Because we have to. We have to try and be strong for the person who is ill, yet when you leave, your heart breaks again.
I just wanted to say sorry you are going through this, you WILL survive, the world WILL go on when he goes, but NOTHING can take away the bank of wonderful memories you've built over the years.
The crap times you will remember, but they do fade alittle, honestly.
xxx jane xxx

noonki Mon 22-Sep-08 13:28:12

What a terrible time for you all,

I have little advice too I'm afraid,

but a friend of mine who lost her sister to cancer said that the period before they died was the most stressful time of the whole event. On a positive note she dis say it gave them a chance to talk about things that would never had been brought up if she wasn't ill sucha as that once they managed to have a chat about their childhood together and had a bit of a laugh at realising how different they saw some events.

so sorry for you and all of your family x

LadyGlencoraPalliser Mon 22-Sep-08 13:28:14

I don't know what to say MissM, sad but is your brother under the care of a hospice? Our local hospice has a wonderful outreach service that helps to support the families of their patients as well as providing a lot of practical help for the patient themselves, especially with such things as pain management.

ingles2 Mon 22-Sep-08 13:29:15

Am so very sorry MissM sad
That's a very good idea though Enid. you have a chance MissM to make final memories, and to help your brother finalize things, and say things to those he loves.

policywonk Mon 22-Sep-08 13:29:25

I'm sorry, MissM.

I think this period is called grief. In my experience, in this sort of situation there isn't a big transition to a different sort of distress when the death happens. You are already grieving. It's just that at the moment you are grieving with him, and when he dies you'll be grieving without him.

It is unutterably shit. Do you have children? They are the one thing that makes it a bit less shit, I think.

I think friends/acquaintances don't ask because they don't want to make you cry. If they make you cry then they have to deal with the fact that you're crying, and most people are very uncomfortable in that situation. It doesn't make them bad people though.

PoorOldEnid Mon 22-Sep-08 13:29:37

I meant the scrapbook for YOU actually, not for him.

it will give you something to do.

OrmIrian Mon 22-Sep-08 13:32:01

So sorry MissM.

When FIL was dying DH went into deep depression and ended up on prozac and had counselling. His counsellor told him it was a common reaction - in expectation of bereavment, and not being with his father all the time he wasn't able to 'keep busy' in the way that his step mother was who was actully looking after him. It was bad afterwards too but in some ways less painful - the blow had fallen I suppose.

Wishing you strength sad

onepieceoflollipop Mon 22-Sep-08 13:32:46

So so sorry MissM. I have no words of wisdom but couldn't just ignore your post.

The only thing I would say (and this is not an excuse for people) is that in these circumstances I might find it hard to know whether your brother just wants to spend time with very close family, or if he would like to see friends too. People do worry about intruding and whether it is the right thing to do.

They might realise that the person doesn't have long, and sometimes it is hard to know what to do for the best for the person who is dying and for close family etc.

I really hope I haven't worded that insensitively, apologies if I have.

paddingtonbear1 Mon 22-Sep-08 13:33:22

so sorry to hear about your brother MissM. My mum died of cancer a few years ago, and we knew she would die months before she did. Her last weeks were very hard, especially for my dad and aunt who were with her all the time. I'm not sure what you can call it, this period, you just have to get through day by day, some days are better than others (for you and them).
You may find that some people close to you avoid the subject because they don't know what to say, they don't like to upset you. I never minded being asked about mum (a colleague used to ask me about her every week), but for some funny reason felt awkward about discussing it with dh!

ingles2 Mon 22-Sep-08 13:36:22

Dpending on the amount of pain he's in.. why don't you organise some special days. Revisit old places, have a picnic, go the beach, that sort of thing. It might help you all cope with this horrible waiting.

FanjolinaJolly Mon 22-Sep-08 13:36:59

Miss M

So sorry to hear about your brother.xx

In answer to your question I'm afraid there are no easy answers.I think you are totally right though and what you are feeling is totally normal,it is a hideous limbo period.Nothing anyone can say will make it any better xx

You say he feels he has very little time,has he been able to discuss his wishes with you,his loved ones?Are you able to discuss your feelings with him openly?

With regard to his pain control is he being regularly re-assessed by the medical/Healthcare team?

Is he currently undergoing chemotherapy,for palliation,or is he currently receiving blood product support?When his is very anaemic or his blood counts are flat this could be making him feel worse with the fatigue and pain.

For yourself have you been offered any kind of support or counselling?The specialist nurses cna be available for families as well as patients.Not everyone wants this but if you feel it would be appropriate you could probably access them for support.MacMillan and Marie-Curie can also be good sources of information.The Cancerbackup may also be of some help.

wotulookinat Mon 22-Sep-08 13:37:01

MissM, I'm sorry that you are losing your brother. I lost my sister 4 years ago to cancer, and the part where she was ill and we knew she wasn't going to get better was bad, and I kept waiting for a miracle.
I know exactly what you mean about friends avoiding the subject. My best friend avoided me all together and we have barely spoken since. I think they just find it awkward and don't know what to say.
I wish I had spoken to my sister more before she went, though, but I felt awkward too.
Please make the most of this time with your brother.

MissM Mon 22-Sep-08 13:38:00

I feel like I'm grieving really. I just go through so many emotions every day and most of all I want to scream STOP but of course I can't do anything to stop it. There is no way to 'prepare' for his death, all I want to do is to stop it from happening and take his pain away. He's not under hospice care - I think he wants to avoid that for as long as he can because he is finding it hard to face up to it. He hates the words 'palliative care', was dreading hearing them from the hospital.

I have started to write down my memories of him before he got ill because I was finding it hard to remember that time.I actually find looking at early photos of him quite tough right now.

Why do these things happen to the people who have the most to live for? I don't know anyone more intelligent, more talented, more full of life and joy and excitement at what the world has to offer than him.

Oh yes, I do have children thank goodness. They are the reason I get up in the morning and carry on. They're very young and don't really understand - my toddler just says 'mummy be happy' when I'm crying.

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MissM Mon 22-Sep-08 13:42:29

I keep hoping for a miracle too, but the hospital have told him that al they can do now is to help keep the pain under control.

His friends have actually been wonderful. I don't ask for big long heart to heart from people, but if some people just dropped me an email saying how are things and how's your brother that would be enough.

Anyway, that's not the thing to get hung up on. All I want to do now is just be with him all the time. There are just too many things I want to tell him and talk to him about. I am so sorry to those of you on this thread who have lost someone too. I HATE this illness.

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wotulookinat Mon 22-Sep-08 13:45:49

It is awful, but your kids will keep you going. My son was born 2 years after I lost my sister - and I wish so much she had got to meet him because she really wanted me to have kids.
Spend as much time with your brother as you can and talk, talk, talk. Create some memories now that you can think of when he is gone - even if it is only sitting together and sharing a smile xxx

minibar Mon 22-Sep-08 13:46:00

Hi Miss M I coldn't let your post go by without saying how sorry I am for you.
My aunty is in the same position as your brother I think - she has cancer and is fading. I think you're right - this period is so hard - I am grieving with my aunty for the life she has lost, if you know what I mean - the things she won't have and the last two years of her life which have been so terrible for her as she dealt with her treatment and failing health.
I have a book about palliative care which is quite good - it is written by a p care nurse who says one of the worst things for her patients is often the pain they witness on the faces of their families and loved-ones.

She suggests trying to talk to person who is dying, to share the memories that belong to the both of you, to help your brother accept that he is dying (apparently many families say things like "when you're better we'll do this or that").
An that most important is to reassure your brother that he won't be alone and you'll be with him at the end and love him to the end.
Sorry for the can borrow the book if you wish....I hope someone else comes on with more sense than me...

Sycamoretree Mon 22-Sep-08 13:48:46

I went through this with my father from Nov to Feb last year/this year. Words cannot describe the agony. As they deteriorate, you begin to question the wisdom of a health system that cannot in any way assist the inevitable. I spent the days wildly vascilating between denial and torrential grief. I REALLY feel for you Miss M. There's no answer, and I know you know this, but it's important to be able to just vent the agony and frustration somewhere, so I hope this thread enables you to do some of that.

How is he at the moment? Is he still up and around? Can he still do stuff, or is he now bed ridden or at a hospice? I just tried to spend the last months of Dad's life saying yes to as much as I could and enabling him to carry out all the little things he felt he needed to before he could "rest", no matter how silly they seemed.

What no one tells you, is that it's impossible to talk to your loved one properly about what's happening, because it's just too cruel. What are they going to say? It hangs over everything - all the usual niceties of life are utterly irrelevant. I thank god for his grandkids and the welcome distraction they provided and the opportunity for lighthearted conversation in the face of such adversity.

Thoughts massively with you through this incredibly tough time.

Countingthegreyhairs Mon 22-Sep-08 13:50:05

So sorry to hear you are going through this Miss M - it's tough - and your brother sounds wonderful, a real fighter ...

Went through something similar with my father and although he did everything in advance he could in a practical way (wills/finances etc) he couldn't really handle it emotionally (old school = didn't want to talk about it) and it left us all a bit "in limbo" because we were half pretending everything was normal when it REALLY patently wasn't. You are doing the right thing by just following what your brother wants. It's hard though...

This is a completely off-the-wall suggestion and may not be right for you but how about doing something creative for yourself? Something that takes concentration like sewing or knitting or learning to play the piano or similar? It sounds like madness but I only suggest it because I had loads of anxious, excess energy at the time when my father was dying, sleep and relaxation were impossible and I found sewing a tapestry really soothing because I had to concentrate. And I had a special "heirloom" I could look at afterwards that reminded me of him. It's not for everyone though I know so forgive me if it's the last thing you feel like doing.

Sending positive thoughts and prayers x

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