severely traumatised and noone understands...

[tikipop]

first of all, for those who dont know, my grandfather passed away from GBM on 30/5/12. Everyones reactions are really getting to me. Its like they're all assuming that I feel a certain way, and even when I try to tell them how I really feel they ignore it completely and continue on with their words of reassuarance that they think I need, as if i've said nothing, or as if they know how I feel better than I do. I'm not messed up because my grandfather is dead. I've never had a problem accepting the concept of death, and he had a long life full of love that any person would be satisfied with. Had he survived any longer, he would have had no quality of life at all. Of course its sad, its terrible and I miss him like crazy, but im coping ok and gradually accepting it. What i cannot accept is the fourtnight between his craniotomy and death... Thats whats getting to me. I cant properly explain it to anyone who hasnt experienced it. He was like something out of a nightmare, or a horror movie, but worse...because it was real, and someone I love. His facial expression...he looked like he was being tortured from the inside out, trapped facing the unknown horrors of his own mind, unable to comunicate and paralysed down one side. This man was once our strong, proud gentleman just a few weeks prior. No matter how much detail i go into...noone seems to realise just how horrific it was for me. Of course they dont understand what its like, that was expected, but they cant even comprehend that things that terrible exist. They only see the tip of the iceberg... I tell everyone who asks the truth about how I'm feeling. But they just dont seem to get it. How else am I supposed to get the message across? IM ALL SORTS OF MESSED UP. Im having nightmares, massive panic attacks, and his face in that hospital bed WILL HAUNT ME UNTIL THE DAY I DIE! The horrible moans, the tap, tap, tap against the bed when he had to be restrained, and the heartbreaking look in his eyes that silently screamed GET ME OUT OF HERE! I need support but all im getting is the usual crap 'hell always watch over you' and 'hes better off, at least hes not suffering anymore', advice i dont need! THIS is whats bothering me THIS is what i need support with THIS is what i need someone to talk to about BUT NOONE SEEMS TO WANT TO HEAR IT AND ALL THINK THEY KNOW BETTER ABOUT THE WAY I FEEL AND WHAT IM GOING THROUGH!! :'(

[Sunshine006au]

Dear Tiki, Firstly I want to say how sorry I am about the passing of your grandfather. I lost my father in Feb this year to throat cancer, I am devastated, my dad was admitted to hospital in Sept 2011 for a total laryngectomy & he was to come home after 14 days, things did not go as planned as the cancer was aggressive.... from Sept to Feb we only managed to get dad home for 3 nights. Ifind myself reliving events that happened in the hospital & some nights I cry for hours, I cannot get those images out of my head, the first thing people say to me is "his not suffering now" how the hell can they say that to me, it really drives me mad, I know his not suffering because his not here !!! I want him back but I want him back without that rotten cancer. I was approached by a friend of dads last Saturday & this person was so horrible she actually asked me how I could let the dr's "hack my father up" I was numb, I was lost for words, I did not allow anyone to hurt my dad... people need to shut up... nobody knows what its like to see someone you love battle this disease & unless they have travelled the path they should shut up. Sorry for venting but I can honestly say that I know what your going thru & I send big (((HUGS))) & lots of strength to you. Alison xxx

[peanutz]

I don't think I should say that I know how you feel but I have a similar experience. It's not about losing someone but more on the experience of seeing someone suffer or being helpless in some situation outside your control. The only suggestion I have is finding someone you can talk to about this. I know it's not easy to find from what you said. Is there EAP at your work or counselling service some where you can go to? I think your GP can also give you a referral to see someone qualified. My understanding is social workers at the hospitals can also help.

[tikipop]

thats exactly right peanutz. he was the most wonderful, kind, loving selfless man I know, and I wouldn't have wished what he went through on my worst enemy. He was incredibly proud, and had only been in hospital ONCE in 75 years-a few hours in emergency back in his 30s, so he would have absolutely hated his. He deserved to die with dignity, at home in his bed. Not like this... I'm seeing a psychologist due to unrelated issues... I have mentioned these things to her, but they have been bothering me more and more since my last session, so i think I'll go a bit further into it next time.

[tikipop]

Hi sunshine. Sorry to hear about your dad. There is nothing worse than people giving their oppinion when its not needed or wanted. There are very few situations where I believe people are not allowed to voice their oppinion, but this is one of them. While my grandfather was actually IN SURGERY, my boyfriend told me that he thought it wasnt worth wasting that money on surgery if it was only going to give him an extra couple of months. I was disgusted. We've broken up now. How dare these people judge the hardest decisions a person ever has to make? It wasnt even you who 'let' them operate, you didnt 'let' them do anything! Its the patients decision, their life, and they are the ones who have to live with it, or die with it. That needs to be respected!!! Hahaha. 'Hes not suffering anymore'. I hate that one. Normally people ask me how I'm going and I say fine (because I am fine). They just dont believe that I could possibly be telling the truth and still feel the need to find some words to 'comfort' me. 'Just remember, at least he's not suffering anymore'. Yeah, thanks a lot for that, I WAS fine...but now I'm remembering how much he suffered. Good job!! I know he's not suffering anymore, but he was suffering before. Just because its over now doesnt mean its ok. It still happened. It was still awful. My entire family still suffered with him. They act as if its something i've never heard before, something I dont know, thats them being ever so nice and supportive by telling me is gonna fix everything! Of course I know he's not suffering anymore, Im not stupid! Its the only thing helping me cope with his death! It does help...in some ways. I tell it to myself, I cope with it myself, when I need it, when its the right thing that will help. I dont need to hear it over and over again by people who dont know how I feel, whats upsetting me, or how he suffered!

[Maggie_Mae]

You obviously loved and admired your Grandfather very much and it sounds like you have been through hell seeing him beat down in this manor. There was nothing you could say or do to comfort or help him and that must be so devastating for you. The look in his eyes is etched on your brain and you can't get it off your mind. I have no advice or words of wisdom for you. I just want you to know that I heard you loud and clear. Jan

[Pamela]

Hi Tiki You have awful memories in your mind that are in the forefront, which is quite understandable considering what you have been through. However, you were with your grandfather at a time when he needed your presence - you were there for him and he would have known that despite the anguish and trauma each of you were going through at that time. Not everyone has the strength of mind or character or understanding to be there in such a situation, nor to talk about it afterwards. Some who do actually comment may well suffer from 'foot-in-mouth' disease, no matter how well-intentioned. Each of us can only do so much; some can do absolutely nothing. And really, we can't expect people to give where they have no capacity to do so. We need to look for help from appropriate sources. It is very sad when your own family and friends are not appropriate sources for you. But if you do keep looking for help from them, you will only be frustrated further, hoping for something that it is not forthcoming. Your thoughts and memories of your grandfather's last two weeks are strong in your mind and may take a long time to fade. I suggest you start being active in replacing those pictures in your head with positive ones. Can you make an album of his life with photos and stories and/or a photo collage you can look at when you need to alter your focus? Ask your family for all the positive input they can give you for this project. It will help you immensely I am sure, and may (or may not) allow discussion that so far, has not been able to take place. Sending warm hugs of comfort and strength, Pamela

[netty]

So sorry to hear of your loss, I have only partial understanding. My husbands recent craniotomy was very different to one 2 yrs ago because this time it was in in the frontal lobe and so the confusion and fear I could see in his eyes post-op were heartbreaking. I could see his pain but they said they couldn't up the pain relief, he accused me of putting him in a pych hospital and begged me to take him home because he couldn't remember he had had surgery. Despite being in a private hospital he walked out 2 nights after the op in the pouring rain, crossed a four lane highway..all with catheter etc , I was beside myself as they took 2 hrs to locate him. I know none of this relates to you but it helps me also because I can relate to...I had a husband one week that was finally tumour free..to another tumour, craniotomy and now a husband and father with a changed personality, sometimes I just go out and cry because the man I love and married is not there atm. I prayer some of this function can be relearnt but I also will never want him to go through that again and he also says it is his worst fear and at 51yrs I'm very afraid it will not be his last operation. I have a long relationship with my GP and he helps me through the bad days. Don't be afraid to seek help my friend, you cannot go through your life without getting some of those memories filtered out so you have beautiful ones of him. 2 of our daughters 12, and 14 insisted they be there after theatre, but in hind site I would wait until later. You do what you think best at the time, and they just were desperate to see him wheeled out alive. I prayer you get the right person to cross your path and you find some peace at this awlful time.

[rarsie]

Hello my friend your loss has saden me. All I have to say is listen to what the ladies here are telling you try it if it doesnt work go on to the next suggestion and stay in touch on this site Sending you strenght rarsie

[Groenevelt68]

Grief is definitely a personal journey, as no two people feel exactly the same, go through the same emotions to deal with the passing of a loved one. People who have known grief (have gone down a similar path) can understand some of which you are going through. You can also tell which people who have not gone along the path of grief as these people tend to offer the words of comfort (thinking that is what is required). It is an interesting journey, and so far I find that the grief does not actually get better, but what happens is that we develop emotional tools to assist us to get back into the world to function. The daily tears of the loss, lessons and the feeling of someone reaching in to rip out your heart starts to dull but the tears are never far away and the pain in the heart does start to dull, but something will always be missing. The smile, laughter, presence of the one we loved (and still love) is no longer there in the physical form. So we rely on all our memories to provide us with the sense of feeling and knowing they were there. I will never fully be able to understand your personal loss but I do understand the journey you are on. My dearest husband passed away on the 6th June this year after fighting for 12 months with GBM. Watching someone who had a fantastic zest of life, who left a beautiful impression with all who met him, slowly decline, muscle wastage, inability to communicate any more, loss of functions is so heart breaking. Yes.....I too know he is at peace.....no more having to fight the cancer......but it is not what I like hearing......when I venture out of the house I prepare myself to try and cope with the community.....so when someone does say something that I can respond in a way that is deemed exceptable......even when all I really want to do is cry, yell, scream.....that it is not fair.....why him. Grief is a very long slow process, where there are times you think you finally are seeing the light at the end of the tunnel and then something falls to dull the light, and we start again. Some tools for coping are, writing letters to the ones we love who have passed away, writing a dairy to tell them how you are coping, to talk to them, to talk to others, only you will know know what is best for you in dealing with this journey. Sometimes helping others go through a similar journey can help you heal while you travel on your own path. Remember to be kind to yourself, look after yourself, take all the time you need to walk this journey, as there are many others walking down a similar path who are also doing the same.