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Bereavement

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

69 replies

MissM · 22/09/2008 13:19

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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Blandmum · 29/09/2008 22:03

So sorry to read your news.

YOu will cope, for the hardenst of reasons, you don't have ano option Are you linked up with a Macmillan Nurse and/or a local hospice? they can be great at helping people to live until they die.

Dh managed a balloon flight a week before he died.

But it is hard for you. Sending evey best wish

MissM · 30/09/2008 16:24

Does anyone know about anything that is written about this time before someone dies? There's loads written about grief and bereavement, but I can't find anything that I can relate to now. Except the kind of things you guys who have been through it are saying. There don't even seem to be any books (I mean fiction) that describes these feelings. Or perhaps I'm not looking hard enough.

Can't see my brother until Thursday and I'm finding that tough.

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pushki · 30/09/2008 16:53

Miss M - just checking this thread again today and sorry to hear your brother is not so good - and scared. That was one of the hardest things to deal with when my brother said to me "I'm scared" - at the time I just hugged him and said we were too, but that we were all with him and loved him so much. Was that enough for him now I wonder - just as he did not want to talk about dying I did not want to bring it up - but I do replay that moment with him a lot and somehow wish I had had the strength myself to ask him a bit more what he was scared of. But others have said that maybe that was enough for him to feel loved and with all his family around him. I will never know - we were incredibly close as the only siblings - he probably was protecting me as much as anything as my big brother!! You asked 'how have i learnt to live with his loss?' Thats not easy to answer as I still don't think I have truly, 5 years on. No one apart from my DH would probably know how much it still hurts and how angry I feel still for him and his family. Not having any other siblings as well has left me with this incredible feeling of lonlieness - inspite of the love of my DH and my two boys and parents, a difficult thing to describe. Growing up all my life with my brother - there's something so so special about that relationship. Of course I try and look at the positives - like yours, he packed a lot in - ironically had reduced his work hours just before being diagnosed so he could be at home more and go mountain biking. He felt he was at the best stage of his life I remember him telling me a month before diagnosis. Sorry - I hope this is not too sad for you - but you asked?!!! I am thinking of you lots x

tengreenbottles · 30/09/2008 18:32

I looked afterr a young man who was dying of cancer and he said that the time before you go means you get to say goodbye to people and plan your own funeral ,so you arnt sent off to really dreary or tacky songs ,he fancied smoke gets in your eyes at his cremmation ! He was a really lovely funny bloke and it was a real privelage to look after him . Spend all the time you can before with your brother before he moves on to whatever it is we move on to

MissM · 30/09/2008 21:46

Pushki I found your message so moving. My brother said on Saturday he had nothing to hold on to now, nothing comforting. I told him that so many people loved him that he wasn't alone. He said that was a comfort - I hope so because it's so true. At his wedding there was so much love for him and his wife it was quite overwhelming.

I am so sorry that your brother was your only one. My only comfort when I feel so unhappy is that I have another brother and that there are two of us to help one another through this. All three of us are very close and I feel such relief that I won't be left alone. I am so sorry that you were, and I can relate to what you are saying completely. Anger is probably my main emotion, that and helplessness.

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MissM · 30/09/2008 21:48

He also said that he didn't want to leave us all behind. I wanted to say 'we don't want you to leave us either', but I just couldn't. Having read what you say again I think I need to try to say it to him.

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pushki · 30/09/2008 22:34

Miss M - thanks for your kind words especially when you are going through it all at the moment. I think you should try and say that to him - as his sister whatever you say with love will mean a lot to him I'm sure. Absolutely heartbreaking - I think the worst thing is the fear that he is scared, lonely, in discomfort. Just try and be there with him, touching, hugging him, just being quietly by his side - it must be a great comfort when it is from the people he most loves. Look after yourself, do what feels right at the moment.

Jennalee · 04/11/2008 20:21

I found this post by typing in my brother is dying. I was looking for someone who could understand what I am going through. My brother Jeff is 43 he has head and neck cancer and only is expected to live another few weeks. This period is so hard for our family we are all so devistaed by this. We only found out he had cancer 3 months ago. Everything has happened so fast and we are all still in shock. I don't know if it will help to know someone is going through what I am but I am willing to find out. My brother is very precious to me, he is my little brother. We have had some incredible talks and I am spending all the time I can with him. But I do want to find someone who knows how I am feeling about losing my brother.

pushki · 04/11/2008 20:44

I'm so sorry Jennalee to read your post about your brother. Sadly there are a few of us on this thread and a couple of others who have lost a brother. My only older brother died aged 40 just over 5 years ago now from prostate cancer (sadly younger men do get this disease as well). We had a year after diagnosis till he died - but he went downhill very rapidly in the last month - so came as a real shock in the end.

It is just bloody horrible - no real comforting words to ease the pain at this stage - you are doing the right thing by trying to spend as much time with him and you will really value that and the talks you are managing to have. I still wish I had spent more time with him in the last few weeks, so do make the most of it - he will find it so comforting I am sure to have his big sister with him.

Just put everything else on hold if at all possible at the moment, accept any help from friends, take some time off work , and also make sure you look after yourself and the rest of your family. Have you got access to anybody like Macmillan nurses/ hospice? We didn't unfortunately as no one really predicted his prognosis that accurately and do wish he had more in the way of palliative care - although ironically our mum has worked in as a nurse in a hospice for over 30 years - so she knew really he was dying and looked after him so well - can't imagine how hard it was for her to know what was going to happen.

Keep posting if it helps and will keep in touch to offer you any thoughts and support. Take care.

MissM · 06/11/2008 19:56

Jennalee I've just seen this after coming back to this board after a bit. My brother who is the subject of this thread died on 17th October of non-Hodgkins lymphoma. I wish I could help you feel better but I can't. The period before he died was dreadful, now it is worse But it does help to speak to people who know how this feels. I don't know anyone in RL who has lost a sibling and although friends who have lost parents can empathise in some ways it's impossible to know how it feels to lose your little brother. I started my eulogy at his funeral with 'He was my little brother'.

It's agony, but I hope that as I start to come through this initial phase I will remember that some of the last times I spent with him were good. Please spend as much time with him as you are able and don't worry if you can't think of anything to say. Just be his sister as you always have been and say what you need to.

I wish I could make you feel better. I am so sorry that I can't, and that you have to go through this too.

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VaginaShmergina · 07/11/2008 22:12

Excuse me jumping in but I found your thread some time ago MissM when you first posted and have had it on my watched list.

I am so sorry you lost your brother, my deepest sympathies to you and your familiy.

I too have lost a brother and other young members of my family and am currently on a thread for bereaved siblings that another MN'er has started up, I foolishly have started typing this before getting the link.

It may be of some use to you or others who have posted here to post on the other thread. I am 19 years down the road from losing my brother, but I can tell you it's a bumpy and unpredictable one.

Again my sympathy to you all and I will go and get the link now.

VaginaShmergina · 07/11/2008 22:13

Here it is

MissM · 08/11/2008 17:00

Thank you so much. I will have a proper look when I don't have a toddler sitting on my lap! Have had a very low day today - it's just so unpredictable how I'll be from one day to the next at the moment. But I guess you know that.

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JenCraig · 09/11/2008 22:13

I am so sorry for all of your losses. I appreciate all of you for responding to my above post. I don't feel so alone and I know someone is out there with hope of making it through this. I changed my nick name so if your confussed this is Jennalee. Thank you to all of you who care.

VaginaShmergina · 10/11/2008 17:54

Jennalee/JenCraig, how is your brother, how are you doing ?

cookiemonstress · 13/11/2008 12:52

I just wanted to say thank you. THis thread has saved my day. My mum has terminal ovarian cancer and after a bit of good spell, it is now moving fast and aggressively. It's a matter of when and not if... She lives a long long way from me which makes it hard to process. We found out the day after we returned from holiday in september and although on the surface I have been dealing with it, underneath I have deliberately kept it at arms length because it's too big to process.. This week however i have had a series of small anxiety attacks and felt as if I am going mad. Reading this thread makes me realise that what I'm feeling is fear and grief and I am not loosing the plot. In a short ten mins it has focussed my mind on what i need to do now.
I can't write much more as am shortly off to a meeting and in danger of crying at my desk but my thoughts go out to everyone on this thread and I want to say thank you again for sharing your stories. I can't tell how much that has helped me today.

sphil · 17/12/2008 09:32

I have found this thread a great comfort too. I've posted about my Mum's terminal cancer in 'Health' because I didn't think I could post here until she dies. But this says so much more about how I'm feeling. My mother isn't outwardly ill yet - just more tired than usual - but we've been left in no doubt by the doctors as to the severity of her illness. She hasn't seen the cancer team yet (due to hear about appointment today) so we've had this weird week of limbo where it's become increasingly hard to believe that there's anything wrong.

evansmummy · 17/12/2008 10:15

JenCraig, how are you and your brother? Thinking of you xx PS Do come and post on the thread that was linked above when you feel ready.

KimiKay · 19/12/2008 00:46

My mother just passed from lung cancer after a long bout of kidney failure and I have to say that there is no feeling you have while this is happening that is not justified. The only difference I guess is that due to the kidney failure, she wasn't always "with us" if you know what I mean. I prayed and prayed and cried for just one more day, one more hour before she passed that she would look at me and know who I was, who my children were, tell us she loved us. Two weeks before she died, I had two hours where she knew us. She said she knew she was dieing, but she wasn't afraid. She was ready to go. I can't say for sure what its like to lose a brother, but my mothers death has changed me in a profound way. I had to decide to stop all heroic measures, but I felt it was what she wanted. She was in pain, she didn't know where she was and all we were doing was making her die longer. So, we decided to stop all medication except for pain meds on a Monday----a very tearful Monday. Each one of her children had their "moment" with her. Can I say without anyone thinking I'm crazy that I could feel her pain, her anxiety, literally. She had an irregular heart rate one night in the middle of the night and took her to the ER. There was no time to call me, my sisters just took her. At that very moment, I woke up out of a sound sleep because I felt my heart like it had went down the hill of a rollercoaster and all I could see was her face. I knew she was dieing and I jumped out of my bed and fell to my knees in pain, the pain in my chest was so intense. All I could say was "My momma, something is wrong!" and he begged me to call but I was too afraid.

Another night, I heard her call my name like she was in my kitchen, the way she would call my name when I was a child and she was looking for me to come in for supper. I had countless dreams of her reaching into the light to take someones hand, I don't know who, but she would look at me and pull back. The night she took a turn for the worse, I was already awake because I had a dream that she was creeping into the light and turning to look at me like "is it okay?". I was crying my eyes out when the phone rang. The nurse said she was showing all the signs that it was the end. But I knew before they did.

What I can tell you about a terminally ill loved one is that they know. They know when its time, they need you to tell them its okay to go. They want you to be okay without them. Its okay to cry, but they want to know that you will "forgive" them for leaving. That night I went in to my mother. She was way past speaking to anyone. We sat with her for 27 hours. She had not moved, she just breathed that funny sound in her chest. There was no movement, no tremor, nothing. Suddenly, I felt that feeling in my heart again and I looked up and she closed her mouth. I ran to her and I got in the bed and I held her close. I just started talking in her ear-I love you momma, we're hear with you, your husband is waiting for you and your mother. We will all be okay, we will take care of everything, we don't want you to be in pain momma, you can let go. I told her I would never forget her, I would tell my children about her, how much she loved them, how much I loved her, how much she loved Christmas. She died in my arms at 4:57 pm on September 29, 2008. What I felt was guilty for feeling relief that she would never feel pain again. Happy that her struggle was over, but still so selfish that I wanted her hear with me. I was torn. But what I can tell you is that I know you are sad and you are worried and scared, but you have to let them know that its okay to die, that you will take care of everything and you will never ever forget them as long as you live. My sympathy to you, this is going to be hard. The hardest thing I have ever done was hold my mother in her arms while she took her last breath. But she held me when I took my first, I owed that much to her.

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