in january 2019 i lost my husband my best friend and my soul mate i provided 24hour care for him in the last year of his life he was diagnosed with motor neurone disease we had been together for 26 years and never been apart now i dont know what to do im devastated and just want to be with him and im really hoping somoene is willing to chat to me because i dont know what to do anymore i did everything i possible could the morning of his passing to jeep him alive so our children could say goodbye
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Dear Jo,
So sad for you. We are all here on this forum because we have been deeply affected by the loss of a loved one, so you are in sympathetic hands.
You will be experiencing some awful feelings and those will change and fluctuate over time and they are all perfectly normal parts of the grieving we do.
I have thought many times that all I wanted to do was to die and to be with my love again. Again this is very understandable but you must think of how dreadful it would be for your loved ones if you were to act. I’m here if you want to chat.and so are others with their experience too.
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hi Belladoo
thank you for replying. im sorry for your loss my love goes out to you xx family have said just start to get back to normal. they dont seem to understand my normal was to give 24hr care to my husband to wake up a 12am 3am 6am to turn him in his bed… i get make sure you eat and get a good nights sleep just keep thinking are they for real i dont want to eat cant sleep cant go out because thats what is normal to other people but this isnt normal … feel like the last 26 years have been a wonderful dream and now the nightmare has kicked in and im going to wake up in abit and see my husband there sitting in his chair having a cup of tea and asking why i didnt buy chocolate biscuits this week x
My heart goes out to you. I cared for my husband 24/7 but not for as long as you. I know how tiring it is. You must have been exhausted, I know I was. Told I would never be able to do it, I would collapse under the pressure. I prayed for strength mentally and physically and managed to do it. I was alone with him when he passed in the early hours of the morning. His last day was horrific but his passing was peaceful.
All I can say is you take your time. Grieve, cry, and take no notice of what people think you should be doing, they mean well, and we know they speak sense but it’s harder than they can ever imagine. You do what you feel like doing. I am told I push myself too hard. I do keep busy everyday, but this is my way of coping. Good luck
hi Pattidot
thank you for taking the time to reply to me i cant believe how many lovely people there are out there x im so sorry to hear about your husband.i know that my husband appreciated everything i did for him he didnt want carers in and i felt the same. im sure your husband appreciated everything that you did for him and if it was the other way around he would of done everything he possibly could for you x i am trying to keep myself busy at home i feel safe at home . i bought him home today so its been i really tough day i know hes here hes done a few things to let me know x i dont think anyone can imagine what we are going through unless theyve gone through it aswell losing a parent or a relative is different that losing a spouse the one person that knew everything about you good and bad that was always there no matter what x the Jo that everyone knows went with him that morning she will never be back x sent with love x
Hello Jo. My husband also didn’t wan’t carers, so I looked after him alone. The local hospice was supportive but he signed forms to say that he did not want other people looking after him. He kept saying I was an Angel sent to look after him and that he was ruining my life. I told him he was my life and I knew he would do the same for me if the tables had been turned. So you are so right. Keep yourself busy, I found this helped me. I was decorating a couple of weeks later. My way of coping. I also actually liked the dark nights, I could lock the doors and shut myself away. I am however an outdoor person so it wasn’t long before I was outside again. I never go out at night, not interested. I don’t want to join clubs or classes. I have interests and they keep me busy. My Brian also let me know he was with me. I heard him call me one night as I sat reading in bed, so clear. His favourite radio came on at midnight and it certainly hadn’t been on when I went to bed and I had not had it on for days. I sit in the cemetery everyday and close my eyes and listen to the birds. The loudest one is him as he was a singer. I ask everyday for him to come to visit me.
I never in my wildest dreams knew what people who had lost loved ones went through, now I feel awful for not being more supportive.
hi pattidot i cant believe how similiar we are and how similiar our husbands were Darrell (my husband) would say i dont want to be a burden and i used to say if it was the other way round would you look after me and every time he would say without a doubt you know i would so i would say there you go then you are my life and i cant ive without you . i collected my husbands ashes yesterday and bringing him back home like that broke my heart even more but we had talked about it all before hand and he wanted to be at home like always and i wouldnt have it any other way by husbands funeral was on the 15th feb 2019 and i asked the funeral director if darrell could come home the day before which was valentines day and he agreed so he was here my son daughter and 2 grandaughters were able to take comfort in him being here one last time it was special i lay on the floor at the side if his coffin all night im glad we did that for him we were inseperable x i to got the paint brushes out i like to renovate old furniture darrell bought me an old writing bureau so i have been working on that and talking to him but i just cant stop crying i miss him so much xx thinking of you xx
I lost my husband on 31.1.19. He had terminal cancer and had been in hospital for a month having different procedures which were supposed to give him a chance at further chemotherapy as he had been told he wasn’t yet end stage and was too well for them not to do anything. Despite constantly telling the hospital that he was deteriorating and something was wrong, they refused to take notice for 5 days until he went into septic shock. He passed away 4 days later. It wasn’t the death he would have planned. He never got the chance to come home and die peacefully.
After his death, the hospital refused to put Sepsis on the certificate and I had to go through the coroner who got them to change the certificate to show the direct cause of death was Sepsis.
We were together for 27 years and celebrated our 25th anniversary last year.
People don’t know how to react. I wish they would stop asking how I am. They don’t want to hear that I’m lost, that I’ve lost my identity, that our future plans are gone. I go to the cemetery every day. I look at the headstones and see the dates that people have passed away and wonder if I will have to live so long without him.
I’m in my early 50s so I know I shouldn’t think like that especially when he fought so hard to stay alive. But it is how I feel. I guess time will lessen these feelings.
hi Jnyb
im so sorry to hear about your husband . i know what you mean about people asking how are you i just cry my husband was at home he didnt want carers coming in nor did i so i looked after him 24/7 he had motor neurone disease and it attaced him fast from the onset of symptoms about 19 months he had been paralysed for quite a few minths before he passed so i literally did every thing but he bever lost his sense of humour right till the end i had put him on his nebuliser like he had asked and i turned round to pick something up when i looked back at him he had gone grey and i pulled the nebuliser off and put his ventalator back on he looked at me rolled his eyes and that was it i rang 999 and told me to do cpr so i was doing chest compression till the got here they found a pulse me doing the cpr kept him going long enough for our 2 children to say goodbye they then took him to hospital but i feel guilt because he didnt want to be in hospital but we know he passed away at home as there was no brain activity when they got him there x its my birthday today and to be honest i was hoping he was hoing to come and fetch me in the night and i hadnt of woken this morning im 49 and i cant be without him
my love and thoughts are with you jo xx ps for 19 months i have fought with so called medical staff for everything for my husband and they were an absolute waste of time from getting a diagnosis to getting a wheelchair we had to fight for everything ive got know faith in so called doctors or anyone like that
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After he died, I felt detached from everything that was going on and everything I was doing was still for him from dealing with the Coroner’s Officer in getting the certificate changed, to planning the funeral and putting the service sheet together. Someone said to me after the funeral, you can get on with life now but I don’t want to face this new life. I feel like I still need to do things for him. His treatment at both our local hospital and the second hospital where he died was poor. He had already signed the complaint form against our local hospital so this week I finally completed that complaint and sent ît in. I now have to face doing the bigger complaint against the other hospital. It’s not about getting compensation, it’s about getting them to acknowledge that he died as he did, in hospital, fighting to stay alive because they didn’t recognise his symptoms; because they refused to listen to me and to him. I got a copy of the discharge summary from the GP. It said he died peacefully, they weren’t at his bedside to see how he died. On the discharge summary it said he had Sepsis yet they refused to put it on the certificate and made me go through the Coroner. Once this complaint is done, I will have to sort out the headstone. I feel that these are things I’m doing for him but don’t know what I’ll do after that.
I go to the cemetery every day because I need to make sure he’s OK. How mad is that? I know I can’t keep doing it but it gives me something to do. I won’t say it gives me comfort because it doesn’t, it keeps me occupied.
I don’t wish I was dead, but I can’t bear the thought of how long I might have to live without him.
Everyone means well, they tell me to ring or text any time of the day or night. They tell me to visit whenever I want to or they’ll visit me. But they are carrying on with the lives, nothing has changed for them. They still have to work, they have to carry on with their normal routines. I can’t expect them to sit at home waiting in case I want to visit.
I know I just have to deal with this and try to support my children who are all young adults and trying to deal with this too xx
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its not mad at all that you go to his grave every day when my husband was at the funeral directors he was there for 2 weeks and i went every day to see him that kept me going because i could see him and hold him his funeral was on the 15 th january and i asked the funeral director if darrell could come home the night before with it being valentines day and he said yes so they bought him home i stayed up with him all night and lay at the side of his coffin talking to him ive bought his ashes home now and i talk to him and kiss him every night … im sorry for going on im having a really really bad day today . its true everyone is getting on with their lives ours has stopped when people say ring if you need anything to me they feel like empty words because they know i wouldnt ring and say can you come and sit with me i dont want to be on my own or im having a bad day and need a shoulder to cry on i would rather people knock on and take the time to call down and say thought id nip in for a coffee and a chat that would mean more to me x i had to go to the docs the other day and she said i know its hard but youll get through this and i just lost it i asked if her husband was dead and she said no and i said well you have no idea how hard it is and how i feel and no everything is not going to be ok because my sou mate isnt here xx
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I’m so sorry you’re having such a bad day today. This just hurts so much so I know how you feel. It’s true that the offers of help seem like empty words as they know we won’t call but I do think they genuinely mean them. I can’t explain to people what this feels like, as they say, they can only imagine what it must feel like.
Today I was checking my bank account and saw a payment had gone in which I wasn’t expecting. When I looked at it, it was my husband’s last pay from work. That really broke me up, to think he’ll never get paid again, he’ll never go to work again or do so many other things.
I can’t go shopping or do things without thinking about the last time I was there with him. I don’t want to plan things because it seems like a betrayal, that I’m moving on without him.
I feel cheated that I didn’t get to bring him home, that he didn’t have the death he would have wanted. That’s something I’ll have to live with but it’s hard. Sending to love xx
dont feel cheated he is with you now and always will be… true love never dies x i dragged myself up this morning to take my son to college and on the way back home had a nail go into my tyre and i went hysterical. have you got sonething of your hisbands that you can carry around with you x at night i hold on to his pillow and i dont let go because im in the housr all the time everything is around me but if i do manage to drag myself out i take something of his with me even if ita a pair of socks rolled ip in my bag x sending love xx
That’s a good idea. I took his woolley hat to his funeral and now it’s on my bed side table. It’s strange how sometimes I can’t even say that’s he’s died without getting overwhelmed yet I’ve just gone and had a long conversation with the stone mason without getting upset. Small steps I guess x
hi JnyB i had to take some of the funeral donations into the air ambulance shop the other day i was in peieces my son had to talk i just lost it x if anyone asks if im ok i just cry . i think youve been amazing today to get through discussing everything with the stone mason well done proud of you xx take care sending you love and support xx
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Hi
I’ve just read your messages and wanted to say everything you are saying, feeling and doing is normal. We’ve all been where you are now and know the heartache. My lovely husband Carl died on the 2nd July whilst in the gym. He had a massive heart attack and cardiac arrest whilst I was swimming next door. He was, still is, and always will be my world. It was just the 2 of us. He was 58 and I was 57 and we had been together since we were 17. Our 38th wedding anniversary was Valentines Day.
Reading about keeping things of his, just some ideas. I had a lot of the flowers preserved and some of them put into paperweights. They are beautiful. I’m also going to have a soft patchwork teddy made for the bed, made from some of his clothes. We’ve talked on the forum before about spraying his pillow with his after shave or deodorant or even making a cushion cover to put on the bed made from a favourite piece of clothing. None of it is silly, it’s whatever gives us comfort. Try writing a journal telling him how you feel. Start a memory box with special items. When you mention feeling guilty that’s also a natural reaction. We go from crying to distraction and back again. Keep posting. You’re not alone. Sending you hugs. Lots of love Linda xx
hi Linda thak you for your message 3 days after the funeral i went and collected Darrells flowers from the crem because i didnt want them to be thrown away we always used to say i love you to the moon and stars and back so thats what he had acrescebt moon and 5 stars representing moon darrell and then the stars wer myself our 2 children and our 2 granddaughters theywrte all done in white gerbra daisies absolutely beautiful so im in the process of drying all the flowers and the solid foam that made the shapes ive painted and glittered and my granddaughters have the moon and 2 stars and then we have the rest im sorting memory boxes out also going to get Darrells finger prints on a pendant x
im sorry to hear about carl so suddenly my thoughts and love go to you x jo
Tim and I were together 27 years and our 25th wedding anniversary was last year, the day we were told he had terminal cancer. He chose not to have chemo as he wanted quality of life rather than quantity. We were told he could have months but he died 6 weeks after diagnosis. Tim was the strongest, most courageous person, he wasn’t afraid of dying but he was afraid of any pain he might suffer. He was in a hospice for 6 days, his death was so peaceful, no pain and surrounded by love, for that I will be eternally grateful.
im sorry to hear about Tim my thoughts and love go out to you here if you need a chat x jo xx