I’ve four children, brought them up more or less alone… My eldest Natalie, was my best friend, my twin, my first love, soul mate, better half… All my kids are close to me and each other, I’ve made sure of that… No arguments no fall outs… My Natalie went into hospital December 2018 with suspected stroke, seeing as her speech was slurred, tests done diagnosis was an absolute shock and mine, my Husband ( step father to my kids he’s my childhood sweetheart we married 2011) Natalie’s life ended right there with being told she had progressive Bulbar Palsy Motor Neurone Disease… He said she would have 3-4 years… She had 18months only… It is a nasty vile disgusting disease… It robbed her if everything imprisoned her in her body… Brain functioning perfect… Throughout 2019 it was so busy as she wanted to live what she had left and not sit and cry… So I threw myself into fundraising for holidays sky dives, galas, etc to give her everything. In the meantime I had a business, job a house, pets, etc as Natalie had her own flat and three cats and she worked full time up until diagnosis… I had to take time off to do every appointment, email anyone I needed to to try and source raffle prizes etc or just reply to neurologist, I had to sort and issues she had due to the disease. New symptoms get to doctors get meds, get any prescriptions, house sit while she was on holidays, then as she worsened, more and more care, to the point I gave my business and job up, to care for her from 7am till around 7 that night and my husband worked all day then went to Natalie’s she has called him dad for many years and he adored her and went to every appointment also. So we lived apart for the last eight months he would sleep on a single mattress in her room as she was scared of being alone and choke… We got her flat adapted, all equipment she needed, all the care was me and my husband… I had the last visit to hospital with her on 14th June… Suspected chest infection… Soon to be told its not its the disease… Palliative care came in to our daughters room and sat looked at her and said Natalie you do know you’re at your end don’t you… She nodded and I just crumbled into a heap… I rarely cried in front of her she didn’t want that… She looked at me and saw me at my worst… They said we’ll get her breathing stabilised and let her pass at home… Tuesday 16th we was told by the doctor she was that badly deteriorated they won’t allow her home she won’t make it… So her sisters and brother her nan all came she saw them there as she was drifting in and out and struggling to stay awake just to know we were all there now… I held her hand stroked her face, and I said you know I love you, you’re tired go to sleep for a bit… She did and she never woke up I was still holding her hand weight hours later at 11pm watching her breathe, and I saw her take her last breath… My daughter if no one knows about mnd, couldn’t die the last 12 months,over this period parts of her failed first her voice went completely then the use of her hands, then arms then eating drinking swallowing, lastly able to move or walk… She was imprisoned in her body… But she fought on for us. She could of ended her life but she did it for us… She wrote letters for us after she was gone… As selfish as it is and I know people will say the obvious, but I don’t want to be here I want to be with my baby, I’m struggling every day just to stay so my family suffers no more… But I sit and sob every day. I don’t go anywhere, all my friends didn’t message or ring me from her diagnosis… They were 15 years plus friends so I don’t accept they don’t know what to say… I just want my baby back I don’t want to live without her… I feel so much guilt I’m alive she’s not. Did I pass it to her did I do something while she was little, could I have done more for her did I do all I could for her was she as happy as she could in the circumstances… I’ve suffered loss after loss. My daughter then her beloved babies her cats, then all her flat furniture etc (I couldn’t do it my husband and daughters did) empty it clean it. Hand the keys back… I’ve got things of hers in my house and I just cry they should be in her flat with her… I’ve a box of her personal things and I mistakenly opened them the other day. I collapsed to my knees curled up in a ball sobbing her things, my baby’s things, should be in hers not in a box here, to say I’m struggling it’s an understatement… I’m in so much pain it’s so hard so so hard… Thank you for reading.
I have just read your post and have felt your emotions, tears filled my eyes for the sadness you are feeling . Nothing I can say can help I wish I had the words of wisdom. But I cant imagine what you feel because grief for a loved one differs depending on the relationship to you.
I hope time takes away a portion of your pain so you can cope and live for now with your family.
Thankyou for responding. If I stay I’ll never be free from this pain. I sob and sob so much my chest and throat hurt eyes sting and I can’t breathe… I just want to be with her… I’ve no business no job, lost my daughter, and I’ve to claim uc which I’ve had nothing for two months… But I really don’t care about me or anything anymore… I see Natalie’s best friend of 17 years she was there all the way with Natalie visits, nights out when it was early days, then texts. She visited for the last time on the 12th June… She had not seen her since February… (I find people think there’s time to do stuff or see people even when terminally ill… For some reason) I saw Natalie’s friends posts on fb she’s had a “fabulous” week away with five friends and their kids. I know she’s got kids I know she needs to think of them. But a tiny part of me thought how can you just go on?? How??.. My beautiful stunning daughter at 29 has no kids, no boyfriend, never married, thought she would live a little, she had a full time job, flat, cats, wonderful family round her… She was happy having us and working and a few nice things. She had never been abroad, etc… So that was her bucket list… She went to Greece, Malaga, Milan, and Venice with me as I go there every year as I love the city so I wanted her to see it… She did a 11,000ft sky dive. She’s jet skiied. Had a couple of weeks in a log cabin with a hot tub open fire in the forest in Wales… I did my best… But as a mum my guilt for not being able to save her, not to stop it and make it all better won’t go away. Plus the guilt did I give her food or medication as a child to cause this, did I pass it on to her, could I of done more… My faith in people has been destroyed. All in all the people I contacted to get her illness made aware and help fundraiser feel on deaf ears and no one replied. Phil and Holly I wrote hands written letters. Liverpool fc. I even wrote a hand written letter to Jurgen as it was her favourite team no nothing the amount of people… Including granada reports, others too all could of just had some compassion and help me… No not one… I’m done with life, done with people, I just want my baby… She wasn’t their child so they did nothing
If you go you will be pain free yes this is true. I dont think anyone on here that has lost someone is staying for themselves. I think mostly we stay for those we will leave behind. Take it from me losing a mother is one of the hardest losses a child will suffer.
They lose their friend there confident there go to person who will not judge them .
Imagine the pain you feel and imagine the pain your children and partner will feel. Your partner will be so lost and guilt ridden his pain will be doubly bad if you decide to go.
I stay for my children that is all for now i dont want them to suffer the pain i know one day they will have to endure.
Take your thoughts and try as hard as you can to replace them with a memory that gives you strength and hold on to that memory
Hi Marie, I am so sorry to hear that your lovely daughter died from this awful illness. It must have been so painful to see her deteriorate like she did.
It must also be very painful to see how her friends are all getting on with their lives, and your daughter has gone. You feel cheated, who wouldn’t? We all would.
As for your friends who don’t contact you, it is sad, but I have had a similar experience with someone, we just have to try and forget them - they’re not worth it.
You were an absolutely wonderful mother - you wouldn’t be feeling the pain you do if you were not. Please do not feel guilty - she probably had a genetic condition, and there wasn’t anything that anyone could do about it. Have you considered free online counselling? It might help you, as the devastation of losing your beloved daughter is really making you struggle. If you are not yet ready for counselling, then that’s ok, you can continue posting here and we will try and help you.
I have been passed from pillar to post by bereavement in my area also cruse, talking matters etc… I’ve finally got a number for someone who is going to get me counselling ASAP… I’m not sure it’ll help… Nothing will except my baby here with me again… Which isn’t going to happen all I see is her struggling the few days before she passed worse than usual… Her face bobbing and eyes blinking away when I told her I loved her and to get done sleep… Then I see her last breath, her in her hospital bed I can even remember the indentation of the elastic of the oxygen mask… I remember her in her coffin… My daughter’s 29 how can she be dead… Not here having a laugh with me texting me every day, meeting for coffee, her coming to mine for her usual weekend every weekend just to be spoilt and waited on by me after her long week at work… She would come and I’d make her favourite meals, and teacakes for breakfast brought to her in the morning with a mug of tea… We would watch funny things and laugh and she would do her nails and mine… I have never needed anything more than I need her… If I could trade right now I would and I wouldn’t need to think about it… I’m broken so broken, my better half is gone. My love my life… I just want her so I need to be either.
Marie, I am so sorry about yuor pain. I don’t think counselling is a panacea, you will still really miss your daughter and still cry a lot, but counselling does help a lot of people, it doesn’t cure the grief, but it can help you cope, so it is great that you will give it a try.
Also, you might be suffering from PTSD, and a counsellor, after talking to you, may be able to direct you to other mental health services. Have you been to your GP? Have you discussed your grief with them? You loved Natalie so much, and you will never get over her loss, but you have other children and a partner who need you, and we just need to try and make sure that you have the help you need during this difficult period so you can continue being the wornderful mother you are to your other children.
I’ve spoken to my doctor as I needed a sick note for UC but she rang me back to say I’m paying your sick note and if I want some anti depressants ring for an appointment… Some days I think my kids and husband don’t need anymore pain… But I have said were I think they’re OK they’re adults… I’m in to much pain I need to be with my baby… Every day I wake from two hours sleep if I’m lucky and I just want to be with her… I’m literally dead inside… I watch TV but I’m not watching it… I see her face… I’m thinking how I can be with her, I told her to go to sleep… Just for a bit… I didn’t tell her to leave me… Why did she leave me… I ask her why too I ask her to come back, I can’t live without you.
There are days that I wish I was with my dad, days where I don’t want to live anymore, but we don’t have that option, we have to live, for my dad, for your Natalie, it is what they would have wanted, she left you because the pain got too much, but I hope one day you will be reunited with her, until that day, you will have to do your best to live the life that Natalie would have wanted you to, it won’t be easy, how can it be easy when you love and miss her so much, but you can only try, one day at a time.
Thankyou for reaching out to me
You don’t need to thank me, you have been through what no parent ever wants to, this community is all about helping people like you to try and get some meaning back to their life. I am off to bed now, any time you ever need someone to talk to, just feel free to post at this site.
Goodnight and thank you again
Marie I totally understand your pain, loosing a child no matter what age has to be one of the worst things to happen to any parent, all our hopes and dreams for their future watching their friends grow old it’s just unbearable, my son died ( I hate writing that) 2 months ago he was just 23, 2 weeks before his birthday . It’s so hard to get out of bed in the morning, to get washed to move then when I do the day just lingers I hover outside his room but but still can’t go in there, my heart races like it’s going to burst my mouth is dry my eyes are puffy , nothing holds any enjoyment. Sadly it’s not my first child loss Megan my beautiful girl was brain damaged at birth we cared and looked after her for nearly 19 years she was bright and funny and used a talker to communicate as a family we were devastated 10 years ago when I found her dead in her bed , her younger brother and sister just 13 and 14 then were my reason for carrying on helping them and my husband to cope we were such a strong team and now I can’t believe we are reliving it all again this time is even worse My husband and I are also finding it hard to find any reason to carry on I too want to curl up and sleep with my children , but we have our dear remaining daughter who at 25 has lost her sister and now her brother , she is struggling with fears of dying accidents us dying etc she is our glimmer of light and as hard as it is we must stay strong for her. You have 3 remaining children who love adore and need you ( your glimmer of light) it won’t be easy but you like me must carry on for them and your husband, I hope you find things to fill your days and you find something everyday to make you smile even for a moment with love to you
Thankyou… I’m trying every day to stay I’ve three grandchildren also… But my daughter’s all look bear identical my youngest daughter Jade has the children but my first grandchild Shyla she is the absolute image of my Natalie… It’s heart breaking… What you’ve gone through and still here I am very grateful you shared with me your tragedy… This isn’t living, I’m barely existing, i can only try to get through each day just like you. Love to your family. X
I am so very sorry for the loss of your daughter and best friend. Your pain is so tangible in your letter I cried while read it. There is nothing I can say to take your pain away except to take a little comfort that she is no longer suffering. I too lost my daughter aged 29 in December 2018 after an 18 month battle with an aggressive cancer. We refused to believe that she couldn’t beat it but it took her away, bit by bit, in such a painful, horrendous way. Friends can be a great support but some of my longest standing friends have stayed away - the excuse of not knowing what to say. You will find those friends who stay by your side - try not to push anyone away as I know I did. Try to focus on just getting through one day at a time and being there for your other children and partner who will all be missing her too. I wish I could tell you it gets easier
Sending love xx
I truly don’t want to go on without her, I don’t want a life without her, she was my everything, I had to sit day after day for 12 hours seeing to her and near the end how absolutely broken she was from being independent, funny, working, loving life, lady. To needing 24 hour care and to have to sit in a chair and have to be washed and dried and dressed by her mum… I saw in her eyes she had enough, she saw on the day off diagnosis I died that day… I can’t talk, see photos, videos, her things without breaking down sobbing… She couldn’t move at all, speak, or eat and drink she could only blink and move her head. But she tried so hard with her dad to write me the last mothers day card I will ever get from her. Then to destroy me further she did a video I didn’t know about just as her speech was going last Feb. Before it went completely she did this video for this mother’s day she knew it would be the last I guess because the disease was very aggressive and the taste she deteriorated we all knew she didn’t have 3-4 years. She simply sent me this video of her saying I love you… I can’t watch it… I have no purpose, I’m merely existing I don’t have a life without her. I can’t watch TV without losing cobwebs my mind wanders and all I see or think about is her. My husband and I don’t sleep together. He feels helpless he can’t fix me he can’t do a thing to make it better. I hate doing anything because she can’t. Like meals, visit her niece and nephew my grandkids, I can’t and won’t plan a holiday, I just want to be free of this pain… That’s to be with her… I’ve so much anger and guilt. Anger why not someone else why not me… People moaning about trivial things when they’ve a life ahead of them moaning when my daughter suffered so much. Guilt because i feel I have it to get, did I give her the wrong foods or medications to cause it. When she was poorly I don’t think I did enough. She needed a lot of aid from the auction navies so it was wise to stay at home but I think I should of put it on the back of the wheelchair and took her out instead let her feel the sun and breeze on her face… I didn’t do enough… I need to see her stroke her face until she falls asleep, kiss her forehead and tell her I love her. I need my baby so much. Thank you for messaging me.
I am so very sorry your daughter is no longer with you. I have read your post and can feel through your words your total devestation. I only wished I had words that could offer you even a small amount of comfort but I dont.
I just could not scroll past.
I hope with all my heart that one day you find some peace
Everything you say I feel the same - I know that doesn’t help ! To watch your beautiful daughter taken away so cruelly is unbearable - no one understands unless they have been there. Please don’t take any blame or think you could have done more as that is just your grief talking , your love for her is evident in the pain you write about and deep down you know you did everything possible . This life is short and incredibly cruel but I hope you can believe you will be with her again - its the only thing that keeps me going.
So much love xc
Thank you… I don’t think I will find peace… I hate existing without her… She was everything to me, I’m just in so much pain I hate doing things because she was 29 she should be here doing stuff… If I drive past her empty ground floor flat I look at the kitchen window and wish I was visiting and she was there stood in her kitchen with a big smile when she saw me and washing with her rubber gloves on Newbattle heaven to get was cleaning her spotless flat on her days off… I’ve never needed or wanted anything as much as her. I’d give everything to be with her…
Oh Marie, I am so very sorry for your loss. Tears filled my eyes. Your pain is so palpable. And so very relatable, I believe the connection you shared with your daughter is similar to what I had with my beloved mum. She was and is the love of my life, no one ever will be able to take her place. When I’m at my worst I feel just like you, just want to be gone and done with life, and who knows- maybe be reunited with my mum. Gosh I miss her beyond belief, the emptiness will never go away. But 4 months on I’ve started to feel her presence, or just her aura/vibe in the air, her support and guidance… I keep thinking about her and how much she’d want me to go on.
I know your beloved baby would want you to go on too. So for them we must. So called friends will disappoint, but f*** them and all the other people who don’t care or understand, go on for your daughter, in the name of love you shared.
Sending you hugs and lots of love xx