My tragic daughter

My daughter died on the 18th March this year aged 35.
In winter of 2016/2017 she had pneumonia 3 times. Then she started having strange turns we couldn’t fathom out. We did find out when in august last year she had a serious stroke that she was lucky to survive. She had been getting mini strokes. Her right side had gone, so had her speech, memory, reading, writing, all gone. Her doctors were pleased she remembered us. She was in hospital for 5 mths. During that time I was making daily trips to see her. 300 mile round trips to start with, then down to 70 miles when she was moved a bit closer to home, until she was moved to a hospital in our town. I saw her daily.
We managed to get her a bungalow just round the corner from us. She was delighted about it and keen to move in. She was discharged in mid January, then fell the next day and broke her hip. Back into hospital. This time she was a bit low. Because the broken hip was on her stroke side, she had to keep weight off it for 6 weeks. So a wheelchair. I.
She was due to be discharged again on the 8th March. But I got a call from the hospital to say she was very ill with flu. She was very unwell. It apparently took 3 days to cool down and be stabilized. However, the doctor decided to discharge her on the 14th March. I wasn’t happy and told the staff as such. She wasn’t that well, and had a horrible cough. But she was discharged all the same with a supply of Tamiflu. She died 4 days later. We’re still waiting to hear from coroner, but believe there will be an inquest.
The hard bit is that she spent 7mths in hospital, constantly being monitored, and on that one night I wasn’t there, she died.
It has devastated me. The most likely findings from the pathologist will be flu.
I have cried everyday. I can’t see my life without her.
My husband (who is her stepfather for 30yrs) told me on Friday that I need to let it all out and not bottle up my pain. But on Sunday, the 6th week without her (she was found dead in a Sunday) I was thinking about it and crying, when my husband told me to ‘get a grip’ or I would make myself ill. I was sorting out the laundry and crying. This time he didn’t give me a hug. He just stood there. So I went outside.
Is he right? Do I have to stop it now? I am still crying for her. Only I go outside, or sit up at night alone to cry. I feel distanced from him now.
The loss has left me with an enormous hole. The guilt eats me up. I felt lost before, even more so now. I don’t want people around to ‘cheer me up’ I want to be alone with my thoughts, but I didn’t expect to be left to it by my husband.
Is he right? When is the time to stop crying? Chris x

My dear Chris, I am so terribly sorry for what you went through and now having to go through. Of course you won’t stop crying, she is your daughter for goodness sake, you will cry for the rest of your life. I think your husband is being like he is because he does not know what to do, he will be worrying about you because you have both been through so very much for such a long time and he is afraid you will make yourself ill with the grief of it all.

I have never had to go through the nightmare of losing a living child, I have lost a child before he was born and I remember it like it was yesterday, about the same time my sister gave birth to twins who died shortly after so besides our husbands, we had each other to cling to.

Ask him why he is being that way, just sit and talk to him. That is the only way you are going to have the strength to carry on through this nightmare, just talk to each other. After such a long time of watching your daughter go through all this pain and then die is absolutely horrendous, so this is the time you need each other more than ever, so please, just sit down and talk to him.

So, so sorry.

Sheila x

Oh Chris
how terrible I am so sorry, I lost my wife of 25 years on the 12 March at the age of 49.
I cry every day and can’t imagine that stopping any time soon, my wife died unexpectly, but you have been through so much, I hope you have friends and family around you and please seek help as you definitely need it.
Your husband is just extremely worried about you but doesn’t know what to do (why would he)
have you been to your GP, are you comfortable letting your husband sit in with you, it would help him to here what you’re feeling is completely normal.
thinking of you, take care.

Chris, there is never a time to stop crying. You have just lost your precious daughter so cry as much as you want and whenever you want. Yours are more than tears of grief, they are tears of anger and tears of frustration too and those emotions need letting out. I lost my 35 year old daughter in Dec 2016 and I still shed tears for my loss and tears for what might have been. My daughter had mental health problems and for several months had been making attempts on her life but she hid it from us. Her care team knew but we were never told because of patient confidentiality. Afterwards they said her mind was too far gone, there was nothing they could do anymore, but I was her Mum and maybe, just maybe, I could have helped her - but now I’ll never know.

I only got through some days by having my husband giving me big hugs, no need for talking, I just wanted to be held while my heart broke, so maybe your husband needs to know that at times that’s all you need to help you through. He doesn’t need to say or do the ‘right’ thing, you just need him there for you.

The pain is horrible, it’s something you never expect to have to go through, and you need to be comforted, so talk to your husband if you can, and in the meantime I’m sending you a big, big hug. Kathy xx

My first thought too. You will always cry … outwardly for a long time, then inwardly. You have suffered an enormous and tragic loss. The people around us do not find our grief convenient. That is the trouble.

Having lost my son December 2017 I know the loss you are feeling and my heart goes out to you,don’t try and stop the tears they are the amount of love you had for your daughter so never be ashamed of them…
Reading your text you did everything possible you could for you daughter so do not feel guilty…guilt is an emotion we all feel it is just another part of grief…
I am sure your husband is worried and concerned for you but it sounds like he himself is unsure how to cope…you don’t expect to lose your child so it is something we are not prepared for and difficult to accept…if ever…
Take care and don’t expect to much of yourself at this moment just live from day to today.
With Love Marina xx

Dear Chris,
You have suffered a tragic loss and are still in shock from all you have been through supporting your much-loved daughter. Be gentle with yourself. If it is not ideal to talk and cry with your husband perhaps you could find somebody else - a professional would be ideal.
Take care and I am so very sorry for your loss.
Love and hugs.
xCarole

I’m sorry for my delay replying.
I have talked to my husband as you suggested. And we both cried. He said he doesn’t know what to do or say. And he didn’t mean to sound so harsh. He is worried about me.
But he said I keep looking at the circumstances of my daughter’s death, and why can’t I just look at it as she’s just died, not why or how… But to me the circumstances are everything.
Kathy, I can relate to you completely. My daughter also had mental health problems. She battled with bipolar and BPD since her teens. She had taken quite a number of overdoses. But she did tell me that she didn’t really want to died, she just couldn’t cope with the life she’d been given. A few people thought Andrea had done it when word got out that she’d died. Even one of my best friends. When she rang me one of the first things she said “so she’s finally done it?” She took a sharp intake of breath when I told her no, Andrea didn’t do it. Which is another heartbreaking irony. After all her threats and attempts to kill herself, she died when she didn’t want to.
I think after the stroke her mental health problems seemed to get pushed to one side, and the stroke took over. She became quite child like in a lot of ways. Not just childish behaviour, but a child. And suicide didn’t figure in her head like it used to.
So the circumstances matter a lot to me. The circumstances are about why she’s died, and the cruelty of it. But my hubby seems to think I should try to set them aside.
Is he right? I’d find it very difficult to not think about why and how she died, specially when we still haven’t heard from the coroner’s office yet.
XXX

Dear Chris, my 37 daughter and best friend died last August after a long battle with cancer. Like you I still cry practically every day and sometimes it seems to get worse not better. I know I did the best for her whilst she was ill but I still look back and wonder if I could have done more. I think cry when you need to - bottling feelings inside is never a good thing. I think your partner is also struggling with the loss of your daughter but men and women seem to sometimes grieve differently. Suz xx

Chris I’m so pleased you were able to talk to your husband. I think men sometimes feel a bit out of their depth in situations like this and want to be strong and help but are scared of getting it wrong. My husband, while grieving for our daughter as well, would hug me as I cried, but at the same time ask me what was the matter, bless him!

My daughter originally had de-personalisation disorder but a couple of years before her death she was diagnosed with BPD which, as you know only too well, means a high risk of suicide. We didn’t find out until afterwards, she told us she was being reassessed for possible Aspergers/Autism. When we cleared her flat we discovered that she’d been living at times as a three year old, yet with us she was her normal adult self trying to come to terms with her illness. I think only time can help you deal with the frustration and the ’ what might have been’ s, so it’s hard to forget about the circumstances just yet. As Mums we were always able to protect them, weren’t we, and everything inside of us wants to turn back the clock so that we can protect them again because that’s how it should be and it’s so, so hard to deal with the reality that they’re gone. I console myself with the fact that she’s now at peace, no more suffering. She never did like the adult world, she was too fragile for it, and I like to think she’s in a far, far better place and one day we’ll be together again, and that’s what helps me through. Sending you love and hugs, Kathy xx

Can I please thank everyone for your replies. It’s comforting to know other people can understand the hell I’m gong through, and I’m not losing my mind to grief.
I’m also a little relieved that you, Kathy, could see the child in your daughter. My daughter had that little child inside her too. It was often sweet, but also heartbreaking.
When she was good, she was a joy to be around. And everyone said that. But she had her darker side. And that person would rant and rave, totally out of control, and say some horrific things to people. Often she couldn’t remember doing it. Friends and family would fall out with her. I tried to get my other children to understand it was her illness. Only 1 of them didn’t ever fall out with her. He just ignored it. But the other 3 regularly fell out with her. But thankfully the 3 lads were all talking to her over the last 7 months she was in hospital. They were in touch with her, but only went to see her a couple of times each… over 7 months! My other daughter hadn’t spoken to Andrea for 4 yrs.
She must have been on a guilt trip or something when she drove me over to Newcastle when Andrea had the stroke. There were hugs and tears. Andrea recognised us all, and the hospital was pleased with that. But other than that, Andrea had lost everything. She was like a little child. She didn’t remember her sister didn’t speak to her. But her sister had decided she wouldn’t be going back to see her, because stroke or not, she still wasn’t going to talk to her. And she didn’t. The whole family was quite shocked and disgusted at her attitude. But poor Andrea asked for her sister everyday for weeks.
So because I had no help or support from my other children, I was with Andrea everyday. My brother and sister made more effort to see her.
So when Andrea died, they cried buckets full. Specially my other daughter! And I’m finding it difficult to have any sympathy for her. T didn’t take long for her tears to dry up, and get back to being herself again. To the point of even picking some arguments with me, and when we had to empty Andrea’s home (with not much time) we decided the quickest and best way would be to just pack up everything, and store it in our house, then I can sort through it when I’m ready. My other daughter however, had taken my husband aside and told him to just get a skip and throw it all out!
This is what I’ve had to put up with from the rest of my family, during all the years I was trying to help Andrea. Always torn between them. And regularly in tears for her because I couldn’t always go to her because of the pressure from everyone else.
Andrea was regularly accused of having me running around after her’. But I told them I was LOOKING after her. Something they couldn’t see.
I sat and talked with Andrea for hours on end. I knew what she was going through. It’s a crying shame you weren’t allowed to see/hear what your daughter was going through Kathy. Andrea always told me she didn’t want to die really. She loved life when she was well. She wanted help to get well, she wanted that peace in her head and be able to enjoy it. Which is why, I can’t accept she’s “at peace now, no more suffering” as many people have told me. She wanted to be here to enjoy her “peace” does that make sense?
I feel so tormented by it all.
My other daughter isn’t helping one bit… she keeps trying to make arrangements for me, that I don’t want. And worse, she’s been going on about Christmas! What arrangements we should make for that, as she will have a 4 month old baby by then. I keep telling her I’m not thinking any further ahead than today, right now. I have no inclination for a Christmas without Andrea. And I’m finding it very hard to even try to gain any enthusiasm for the baby.
People keep telling me to turn my attention to the baby, it will help me through Andrea. I’ve no enthusiasm for that. It sounds like replacing my lost child with a new one.
Andrea has been my life for so long. I had no help. She replied heavily on me. Even after her stroke and broken hip, still no help or support. The ward staff even asked me a couple of times if I had no family to help… It was embarrassing.
And I don’t see how I can separate all this from my loss of Andrea.
Is my husband right to suggest I do that?
Chris xxx

I’m sorry for the extra long message, I didn’t realise I’d gone on so long. Xx

Don’t apologise, you weren’t going on! I find it a big help to write things down, and the more you write the more I see how similar our daughters were. If it’s OK with you I’ll send you a private message later today. In the meantime you take good care of yourself. Kathy xx

How do you all keep going.?
Reading your replies, and other posts, so many have lost older children, similar to my daughter. But what keeps you going? Richard H you still shed a tear for your wife everyday. And have done for 25yrs.
I just want to join my daughter. What keeps everyone gong? How do you carry on with so much pain?
Chris xx

Oh Chris, I wish there was an easy answer but I think most people on here have felt the same, and only time will help. I had to keep going for the sake of my son and daughter who were absolutely devastated at losing their sister, and also for my husband of course. I broke the day into sections, that was the only way I got through, and sometimes just hour by hour, couldn’t think any further ahead than that, and it’s so hard, time drags. I think you sort of get used to the pain in time, you learn coping strategies, you get used to living in a fog, and all you can do is cling on to the hope that tomorrow will be a little easier to get through than today and eventually it will be. xxx

Hi Chris, For me I keep going for my son who is also struggling with the loss of his sister but also for my grandchildren. I promised my daughter I would never let them forget her. So on the days I just want to give up as the pain is too bad I try and remember my promise to my beautiful daughter and share my memories… Take care xx

Hi Richard, it must be so hard for you after all this time to still be grieving for your wife. Until now, and finding this group, I would never have known how hard bereavement can be.
I haven’t seen my doctor, but really, I don’t want to. I don’t want to go out at all. Small town, and bound to bump into someone who’ll ask how I am. And I can’t take that now.
My husband is stuck for what to do, but now he just lets me cry on his shoulder. That helps.
Take care, Chris xx

Dear Richard, I totally understand why you are grieving for your wife who died 25 years ago and it proves that when you love someone with all of your being, it doesn’t matter how many years have gone by since they died, you still miss them and want them back. My sister died aged 47, my brother in law was 46, when she died 25 years ago. My brother in law never met anyone else., it was always my sister he wanted. He died aged 69, 2.1/2 years ago, and the last words he said was at last he was going to be with his love again.

My husband died nearly four years ago after 47 years of marriage, and I will never stop grieving for him and wanting him back, my future has no meaning since he died and when I think of the years ahead without him I wonder how on earth I will go on.

We were lucky, we met our soulmates, I met my Peter in 1964, so I am thinking that your wife and yourself must be about the same age as my husband and I, when romance was alive, when we courted each other and held hands just walking and talking, no mobile phones ringing all the time, just me and him enjoying our lives together.

It proves that we never forget our loved ones, they live in our hearts forever and yes, we cry for them, for what we and they have lost and it hurts terribly. When my Peter died, half of me died and I wish I could have gone with him.

So sorry,

Sheila xx

Today was very emotional. My first birthday without her. Family accepted my request for no cards.
I keep going over that day, and what happened in that room and seeing her there, and I cry all over again like it’s now, and it still feels like a dream.
My husband thinks I need help. I don’t. I feel I need to cry, not somebody telling me how not to cry.
XXX

It’s 8 weeks now. I feel like it’s getting worse. And I’m being told it’ll do me good to go out. I don’t want to go out. Still very weepy and I don’t want to end up in tears if I’m out somewhere. I’ve no incentive to go out. I cant talk to my other daughter without her mentioning going out somewhere. I always seem to just fall short of an argument with her. Why can’t she just drop it. She might mean well, but I’ve told her repeatedly I’ll do it when I’m ready. It just causes friction and I can do without it. She doesn’t seem to understand I still feel the same now as I did 8 weeks ago. The pain is still as bad. I don’t know what else to say to her to get through.