Bereavement, coping with it and talking about it

[WideWebWitch]

As discussed on the other thread I thought I'd start this for anyone who wants to talk about how they feel.

My Dad died on 18 May 2001. I've never been bereaved before and it was and is hard. We were close. Most days I'm ok but when it hits me, it really hits me and is sometimes completely out of the blue. Something will start me off like hearing a song he used to sing or realising that I have some of the same mannerisms. Or feeling sad that he's not here to share a significant event (my sisters' wedding, ds's first day at school).

People say that bereavement is like a roller coaster (cliche I know, but hey, sometimes we need them) and for me that's true. I don't think you ever completely recover, you just learn to live with it. I'm going to stop now since I was fine today but am choking up writing: it's never far from the surface is it? Not looking for sympathy here though, just realising that I don't want a down day as we have friends staying atm. Cam and Batters, your situatons sound sad too. You can't preview in create conversation so apologies in advance if this is littered with errors.

[CAM]

Thanks for starting this thread www, yes my brother was the youngest of us 4 children and we really feel that something big is missing in our family. Of course it is far worse for his widow, their 3 children and my parents. I have seen my role over the past few years (since he was diagnosed with terminal cancer) as a supportive one to HIS family and my parents. He died on September 5 2001 and his funeral was the place where I have felt the most love in the atmosphere of anything I have ever been to. It was the most emotional day our family has experienced. A year on, and of course, September 11 happened in between his death and his funeral, we are just beginning to come to terms with his absence.

[Azzie]

My dad died in 1988 of lung cancer. I was with him when he died, for which I will be forever grateful, but I shall never forget the total silence after he took his last breath. My grandfather died of cancer 3 weeks ago and it brought it all very vividly back to me.

Things about it still get to me, even now. I wish my Dad had met my dh - he wouldn't have understood him (not sure I do always ), but he would have seen his worth and known that I would be well looked after. I wish he had met my children. My ds is starting to look just like him, and my dh will never see it because he never met my Dad. My Mum has remarried and never talks about Dad, and I don't see my brother often, so I have no one to talk to who remembers him. I find myself telling ds a lot about him now.

I was incredibly grateful to everyone who talked to me about him after his death. I think that it helps to reinforce the good memories of the person who has gone. I also learnt (although this was a difficult lesson) that when someone close to you has been very ill, and life has been very stressful, when they finally go it's alright to feel a bit relieved - it doesn't mean that you didn't love them, or that you aren't grieving, it's just that finally it's all over.

The hardest thing I had to face was when Mum remarried. My stepdad is great, and makes her very happy, so I had no problem with the marriage. It was just that they chose to get married on the same date and the same day of the week that my Dad died - my Mum hadn't realised. They left the reception and drove away on their honeymoon at almost exactly the same time that my Dad had died, just after 6 in the evening. I found that hard.

Every year on the anniversary of his death I try to take some time around his time of death to be quiet and alone and remember him. Sometimes it feels as though I'm the only one who does.

Sorry, I'm having a bit of an emotional day.

[bluestar]

My nan died 4 years ago and she was like a second mum to me and my sister; was always there when we finished school, kept our secrets, came on all family holidays with us etc. She had a stroke shortly after her 60th birthday and remained in hospital for 4 months before passing away. That was a very hard time for us. At one point we thought she'd make a full recovery but then had a relapse and sometimes I think it would have been easier if she had passed on straight away as she had no quality of life laying in a hopital bed with people doing everything for her when she was previously SO independent - she rode a bike everywhere and still had a job! I do miss her and more than that, I got married when she was too ill to attend (a very hard decision leading to a very emotional wedding) and have a ds she would have absolutely spolit and adored. Sometimes life is cruel but I believe that things happen for a reason and I hope that she looks down on me and is proud.

[Bobbins]

Ach! Never posted before, but have found this site immensely interesting for the last year and a half, but I've never felt the time was right to vent on the message boards.

I'm afraid I'm having the most awful year as far as bereavement goes. I lost my only son in March, to pneumococcal meningitis. His name was Harvey, he was 10 months old and a real cracker. There was some question of medical negligence as we had taken him to see the GP twice, emergency doctors twice and the hospital three times in the week leading up to his death. It wasn't until he started fitting, after 6 days illness, that meningitis was seriously considered. We kept being sent home and told to administer calpol and push fluids, but we knew there was something dreadfully wrong. During the next month my mother was diagnosed with breast cancer. It had obviously spread extremely rapidly and unfortunately she died three months ago. And then we had to go through Harvey's inquest. the medics admitted some mistakes were made but the coroner preety much absolved them of any blame. I think we were too distraught by everything to take things further.

This all sounds like a bad movie script I know. It is a truly devastating time for me and it is putting a tremendous strain on my relationship now. I know my partner is struggling in his own way to deal with the loss, but I can't see how going out and getting completely plastered all weekend can be helping either of us. He doesn't seem to be able to offer me any support. I think these things either cause a make or break situation, at the moment it seems to be breaking us, which is awful,I would dearly love to try for another child. I'm sure some people would say it is too soon. At the moment I feel helpless. I'm 31 and it feels like everything has caved in. i'm still going to work, but some days the responsibilities seem too overwhelming. I know I will never get over all this I just hope it gets a little easier.

I've wanted to post here for a long time but felt like all this might just be too much of a burden, IYKWIM. I'm sure somebody is probably going to scream counselling at me now!

[mam]

A child we know will soon lose a parent who has been diagnosed as terminally ill. Don't know how I'm going to deal with it when own children discover. We just talk normally to the family as that's how it seems they want things to be but I feel harsh but hope that what everyone says about how they want people to be is right. Hard to write this.

Bobbins I wish I knew what to write that might help, you mentioned counselling, I do wonder what do you think?

[Bobbins]

Sorry about the double post. First time on here and I'm flooding already!

Mam... I've had a little counselling from the Meningitis Research Foundation, but its hard to know where to begin, what with losing my Mum too, and having the relationship difficulties, it just feels like one big MESS. I've tried to just get on with work, as at first I found that really useful, to try and gain a semblance of normality. Everything does seem OK some days.

[Mooma]

Dear Bobbins, you say that your partner is not coping well or providing much support. Are you getting any from anyone else? You have had such a devastating year, please try to find the help you need to weather this storm. Love Mooma x

[nics1stbaby]

My MIL was diagnosed with terminal lung cancer last Christmas. She has been unwell for years, suffering with Osteoperosis, Angina and Arthritus, which is part of the reason that this Mesothilioma cancer wasn't diagnosed sooner. At the moment she is deteriorating fast as the cancer is in her bones, and well, appearing everywhere. My husband and I are expecting our first baby at the end of October, and she has said that she is aiming to make it to meet him.

We just don't want her to suffer, and I just want to give my DH all my support.

I've never been through anything like this before.

[winnie1]

Oh Bobbins how awful for you. What a beautiful baby, what a devastating tragedy... my heart goes out to you. You have had a horrible year, don't be too hard on yourself and don't expect miracles. It is early days and I really don't think that you will ever 'get over it'... you will simply learn to live with it. It is a cliche but counselling is a route. Loosing a parent and a child in a matter of months is heartbreaking and you cannot expect life to ever be the same again. As others have said experiencing the death of those closest to us is a life changing event, things will not return to 'normal' because 'normal' included your mother and Harvey. I know that your husbands behaviour seems very selfish but people deal with grief in very different ways and although it doesn't help you I truly believe that people can act completely out of character following a death. I also believe that dealing with other peoples pain when one is hurting so very much oneself is almost impossible. You both need help, seperately and possibly together. I've mentioned it on a previous thread but Virginia Ironsides book 'You'll get over it' has really helped me if only because it is someone putting into words how I feel about my own fathers death,HTH, winniex

[bells2]

Oh Bobbins, Harvey was such a beautiful baby and he loooks as though he had a big personality too. What a hideous tragedy to lose him. I feel desperately sad for both you and your partner. As Winnie says, however hard it is for you, your partner's behaviour is no doubt just his way of dealing with grief. When my father died, I only took 1 day off work - bizarre behaviour obviously but I was just so shell shocked by it all that it seemed like the right thing to do at the time.

I don't know what else to say. Losing Harvey and your mother in one year just seems too much for anyone to bear.

[SueDonim]

Bobbins, what a a tragic event. The observations that things will never be the same again are spot on. How can life be normal aain? These things have happened and are part of you forever. My PIL's lost three babies and my DH's 10 yr old brother and I know those losses shaped my MIL in particular (FIL died in 1990) to be the woman she is today. There is something special about her in a spiritual way, I think.

Azzie, I was also with my father when he died in September '98, the day after my birthday. I can identify exactly with the silence after the last breath. I found it pretty traumatic, even though it was very peaceful. I didn't sleep at all the night after because the sound of my own breaths kept waking me up.

He was 91, which was a marvellous age but I now understand that age doesn't really count for much when you lose someone. If it is someone young, then of course you grieve for the lost years but we don't love or miss people any the less because they are old. My dad was still 100% mentally alert and enjoying life until he became ill, three mths before he died.

In May my honorary uncle died (I don't have any real aunts and uncles) and I found that shocking. He was 'only' in his 70's, was full of life, active, busy, loud, opinionsome and such a big part of my childhood.

Enough said for now, the monitor screen in disappearing in a haze of tears.

[Bobbins]

Yes he was a little smasher, with so much character. It is nice to hear people say that, it feels like he exists still somehow. Sometimes it feels like nobody really remembers what we've gone through, although I know they do. I agree with what previous posters have said, I have felt at times the need to talk about it all incessantly, and at other times I have felt like I wish people weren't talking to me about it all, or looking at me with any sort of pity. I quite like counselling phone lines when I feel the need to talk, I haven't used them for a couple of months. I've found that when I have made an appointment to meet face to face with a counsellor I haven't felt at the 'right' time to talk. I suppose I can be quite cynical about it at times.

Its very confusing to have two bereavements so close together. In a way I feel I can come to terms more readily, but losing a child is just not the expected natural order of things. I feel like Harvey's death may even have even contributed to my mothers rapid deterioration. She was Harvey's carer three days a week while I returned to work, and she was so overjoyed to have him for those days.

I feel like in a way as the days go further away from their deaths and people seem to talk about it all less and less, its actually becoming harder for me. The funerals were all organised by ourselves, with no undertaker. They are buried next to eachother in a beautiful woodland memorial. With the help of friends we decorated Harvey's 'ecopod' (alternative green coffin) inside and out. We had humanist ceremonies which were great and very personal. We have since had a picnic round the graves. All this we found immensely helpful and empowering.

After all this I was involved very heavily with doing all the letter writing/organising for the inquest. A very lovely woman from NHS Direct suggested I should become some sort of patients advocate, but to be honest I felt quite exhausted by the whole rigmarole. Now all these things are out of the way and for the last two months we have just been trying to get on with grieving. I'm just feeling very lonely and it looks like my relationship may be just about broken, and I can't bear the thought of any more emotional (or financial)upheaval.

Mad and crazy times.

[Bobbins]

Thanks Mam, Mooma, SueDonim, bells2, ks, winnie and anyone I've missed for your kind words and advice. You wouldn't believe the amount of cards we got saying "don't know what to say" after the deaths. It is a hard subject to even know how to talk about. I don't want to take up the whole thread, I know everyone is here because they have probably all been bereaved in some way, my commiserations to you all. I will continue to post here. I recognise all of your names and posts from 'lurking' for so blinking long.

re. partner & feeling like nobody really remembers whats happened...the reason for this is really because our so called friends seem to have no compunction in encouraging partner to spend the whole weekend clubbing and drinking. This weekend he left at 2pm on Saturday and stumbled home on Monday morning, apparently he was too drunk to come home the night before. I really feel that this behaviour is effecting me badly and I don't know what to do for my own sanity. I understand we all have our own way of dealing with things, but this destructiveness has been going on for months now. Yes, he was like this before the bereavements, just not so often. I really don't know what to do for the best. I don't know if I can live with OR without him. Oh my god, U2 cliche.

[mears]

Bobbins - I read your postings with my heart racing because my ds had this same disease but very luckily survived. I am not sure about posting this story but I have decided to do it in case it can demonstrate how difficult pnuemococcal meninitis is to diagnose.
Kenneth was 6 months old when he developed a temperature but otherwise seemed well. After a day it had remained up 38-39 dgrees so I took him to the doctor. There was no signs of a specific infection and he was started on antibiotics. He seemed to get better. A few days after his antibiotics were completed his temperature shot up again. Otherwise he was OK. I took him back to the same GP and he was given other antibiotics. Throughout this time he was feeding fine.
Again, a week later his temperature was 39-40 degrees. It was a Sunday so I called the doctor out. It was a different doctor who thought that his temperature might be related to a chest problem so she prescribed Alupent which helps decongest the chest.
On the Monday he wouldn't feed. I decided to let him sleep and took his older 2 year old brother to mother and toddlers group with instuctions for dh to phone me if he didn't eat anything while I was away. I got a call at 3pm - an hour later and went home. Again Kenneth was very hot but this time wouldn't feed. I called the surgery to speak to the doctor ( a different one), who asked if it was alright to do a home visit when the surgery was finished. I said that would be alright because it was the same sort of symptoms he had had before. The doctor came about 6.30pm and examined him thoroughly and could not find any cause for the temperature. He was very hot and his hands and feet were freezing.
The doctor gave me the option of staying at home overnight after starting antibiotics, thinking it was most likely a chest infection. I decided to taking him to hospital would be better because he now was not feeding.
I wasted a bit of time packing a case because I wanted to take babygros, nappies etc. I then realised that his breathing pattern had changed so decided we should go.
We arrived at the hospital about 8.30pm where we were seen in casualty. A nurse checked his temperature and said it was normal. He was placed on a trolley bed and propped up because it was thought he had a chest infection. When they did this he stated to moan. The doctor then asked me how long his fontanelle had beed egg-shaped. I then realised that he had meningitis although at that point we weren't told that. His fontanelle had started to bulge just as we were admitted. All hell then broke loose. He was attached to monitoring and put on a drip. A consultant was called who arrived within the hour and decided to do a lumbar puncture. This confirmed he had meningitis because the fluid was cloudy, but not what type. I subsequently discovered that a lumbar puncture can be a very dangerous thing to do at this stage because the sudden release of cerebrospinal fluid pressure can result in death.
We were soon told that it was pneumococcal meningitis and we would have to wait over the next 24-48 hours to see if he would pull through. We were also told that if he did survive he might be deaf/ brain damaged.
Thank God he did respond to antibiotics and was allowed home 2 weeks later, still on antibiotics which were continued for another week because pneumococcus is a difficult bug to kill. His hearing was checked and is OK. Apart from delayed speech he has survived unscathed.
His illness carried on for 3 weeks prior to it being diagnosed. He never fitted with his temperature and I had always wished that he had so that his illness would have been diagnosed sooner. Sadly in Harvey's case that didn't help.
The last GP to see Kenneth was stunned to discover his diagnosis.
I hope this story does not make things worse for you but I just wanted to reassure you that you did everything you could. It is such a devastating disease. We were so lucky that Kenneth was able to be saved and am so sad that Harvey wasn't. Kenneth had numerous thorough examinations but it wasn't till the disease had revealed itself that anything could be done. Please tell me if this was a mistake posting his story - I am unsure about doing it.

[bossykate]

bobbins, so sorry to hear of harvey's death followed so closely by that of your mother. what a lot you have had to bear - alone it seems. has it gone beyond the stage where you can talk to your partner? maybe this is his (not very constructive) way of dealing with his grief. well done for holding it together. take care.

[mam]

I feel speechless but have to say thank you Bobbins for sharing with us (I can't find the words) but thank you for contributing to this section. As I said before I really wish I could post a message which would really help but all I can say is what others have said before and I wish you the best life has to offer from here on. What you did for Harvey sounds wonderful and maybe in time because of your own experiences you can be there for others who no doubt will follow in your footsteps why this has to be I continue to question. I'm sorry for everyone who has lost and must end now partly because I will continue to ramble instead of being of any use. Men often deal with things in a very strange way to women and I think we have to remember this which of course is very easy to say but please for your sake as much as your dh remember as has been said before by winnie1.

[Marina]

Bobbins, he was the most beautiful, cheeky-looking little guy and my heart goes out to you utterly - to lose your dear mum so soon afterwards was such wretched luck. As others have said, let it all out here, Mumsnet is a priceless resource for making you feel less alone in the bad times.

[Bobbins]

mears, you were absolutely right to post the story. It is very similar to Harvey's, but unfortunately his story had a very different outcome, you do beat yourself up with all the "what ifs" don't you! I feel that Harvey got caught up in NHS protocol and just sheer damn bad luck. i think his general chubbiness worked against him. We knew his usual condition; very sparky and constantly giggling. Apparently it is not this NHS trusts policy to perform unecessary lumbar punctures or even to keep babies in overnight for observation after a certain age (apparently they used to). I truly I feel that Harvey had meningitis at least from the wednesday before he died, he was a very poorly boy, but obviously we will never know this for sure as no diagnostic tests were done until it was too late. I still feel very bitter when I go over it all in detail, but I don't think it is unhealthy to let that eat me up, so I have decided not to dwell on it constantly. i never wanted to apportion blame to any individual, which I think it would come down to if we were to take legal action.

It is a devastating disease, and I don't think people are aware enough of it. Harvey had no rash, even at the end, but his (yuk) post mortem revealed he had advanced meningitis and septaecimia. The head paeditrician at our hospital insisted that it always comes on very suddenly (I'm not convinced), and he said that the only hope of erradicating it was to have a national pnemococcus B vaccination, BUT it would be very expensive!!!! (100 pound a head or some such!!!) To think I was dreading his MMR!

OOH it makes me angry. My mum had been a nurse and a midwife (I think you are too aren't you?) She was 62 when she died, and she had been a headteacher for fifteen years. I think her frustration with the whole nonsense must have had some affect on the aggressive spread of her cancer.

It seems strange to be posting on a parenting website, I am still Harvey's mum though, and hopefully its not too late to have another one day. Thanks for your story. It is so sad, but the people that I speak to from the Meningitis Research Foundation have told me that unfortunately Harvey's story and stories like your son's are not so uncommon.

I feel so ambivalent towards the NHS now.