Nights are the worst

Hi everyone
Well here we are again another night where I can’t sleep why are nights so difficult. My hubby died of motor neuron disease in Feb aged 55 . And it just feels so unfair I cared for him for 2 years and when I cant sleep at night I think did I do all I could did I do things right . When i was exhausted some days I got a bit crabby I feel guilty for tht so much . I go through the day he died etc i re live so much of tht two years and it breaks my heart sorry for going on I know you will all understand xx


I think for MND there is little one can do. Please don’t blame yourself too much as we are just human. It’s hard to be a carer for your husband for 2 years. You’ve done what you should do. All I want to say is life sucks. No matter how much we love our soulmate and how important he/she was to us, they have been snatched away from us forever for no reason. It’s not fair. But that’s the way it is.
I lost my wife in March. She’s just 50. She’s the most important person in my life. The perfect wife whom I was so proud of. She’s also the best friend of my 14 yo daughter. With her gone everyday is so empty. I’ve lost all the joy and hope in life.

Sorry for your loss to it so so hard isn’t it im not surevwhat to do its like I’m list I get up each day and just feel lost I think its also because fir tht two years I didn’t have a life for me anymore as looking after petevwas a full time job it was every few mins he would need something poor man . So now I have this loss and so much time x

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part of our lives were dedicated to our love ones: we took care of them in health and illness. This purpose was lost when they’re gone. And the day is long and empty.
It’s a hard journey which has just began.


Helly, I have done exactly the same. I’m an experienced nurse for 36 years, an A and E sister too. I’ve thought, was there something I missed? He didn’t have any symptoms from the initial Bowel cancer which, unknowingly had silently spread to his liver and lungs. It was inoperable by the time he was diagnosed. No weight loss, nothing. In the 20 months that followed he was largely coping, having chemotherapy but a few hospital admissions with infections. When I looked after him in the final months as he was losing the fight, I too was exhausted and yes, I was snappy at times and HE apologised to ME! I’ll never forgive myself for that. Was there anything more I could have done? I honestly don’t think so but I still question myself.
So, you’re not alone in these thoughts and feelings but my guess is that you did everything humanly possible to help him. X

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Hi Helly,

Please be kind to yourself - MND is a terrible disease - my friend had it quite a few years ago and although I went to see her, it wasn’t enough. To get a bit crabby sometimes is only human. I too now feel guilty for maybe not doing enough, but we are all only human. My husband actually had a t-shirt with ‘I’m only human after all’ on it. Yes, I too re-live the past couple of years and sometimes wish I had done things differently, but my husband said he loved me, thanked me for looking after him, and died a few hours later. I try to keep that in mind, although my heart is still very much broken, life just isn’t fair :heart: :heart: xx

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Sorry I’m not getting notifications so I missed literally 100 of replies to my post thank you for replying yes im struggling at mo I know its early days but it’s so shitty x

None of you should feel guilt. I’m sure you all did your best in a terrible situation to care for your partners. My beautiful, caring wife passed away on the 22nd April. I cared for her for over 2 years 24/7 as she had a rare brain disease. I’m not complaining as I would do it all over again. I have a really bad time with guilt as well. The disease changed her lovely personality over time and I feel terrible that some days I was inpatient with her. Even though she told my daughters that I did a wonderful job of looking after her I sill keep thinking could I have done more to make her final months better. I wish I could get past these thoughts.

Thanks to everyone for listening to me.
Take care and look after yourselves x

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You sound like me Gary I know deep down I did a good job but some days I got crabby with him as I was so tired . I really didn’t have even 5 mins to myself as he couldn’t do anything for himself but u get all the guilt don’t you did I do my best could I of done more why did I snap at them tht day etc etc and I’d do it all again if I could have him back not that he would want to come back like he was x

Thank you lesley yes it is a vile disease hun sorry about your losses to my hubby told me on his chart he loved me he could only blink and he spelt it out to us in the morning I still have the bit of paper my daughter used to write it on as we were doing it bless him . It’s so lonely without them isn’t it hun when dis you hubby pass away x

Thank you hun sorry for your loss bless you. yea every night I lie here going over snd over it in my mind I’m just not sleeping I’ve decorated so many rooms just to keep busy I don’t like sitting tonlong as my brains starts thinking and I get upset so I’m busy busy busy but then I think is tht why I’m not sleeping because I don’t give myself time to wind down

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Ah Helly,

It is an absolutely cruel disease - definitely must be one of the worst - I feel for you so much. He wouldn’t have chosen this disease in a million years, but then neither would you. It really takes so very much of your time and attention. I used to go and see my friend (with my mum and my sister), and the minute I got there her husband was out of the door. I can’t condemn him though as life must have been so difficult for him (he is with someone new now I believe). My husband passed away in December 2018, but it could have been a few weeks ago really - I can’t seem to move on much at all. About 8 months after he died my family and I took his ashes to Llandudno (my daughter (and a psychic medium) told me that is what he wanted. Tomorrow, (20th July) myself, my sister, my son and my 3-year-old grandson Cole will take a trip to Llandudno in Wales to re-visit where we left his ashes. I hope it will be a happy day (sort of) as he loved Wales. All we can do is keep on trying and hoping they are somewhere watching over us, till we meet again :heart: :heart: xxx

Hi Lesley.
I’m sorry for your loss. I hope visiting Llandudno gives you some happy memories.

My wife passed away in April after a horrible brain disease which she did well bravely coping with until it took hold after Christmas and was horrendous to watch her deteriorate.

Myself and two of my daughters and my 3 year old granddaughter are going to Majorca next Monday for a week. We are taking some ashes to spread. It was our special place where we planned to spend a lot of our retirement. That’s all gone now. I’m dreading getting upset on the flight over.

I’ve said in the past I wish it was me that went and not my wife Dianne. I’ve changed my mind , I wouldn’t like her to be going through what I’m going through now. At least she’s at peace.
I wish we could all find some peace.

Take care
Gary x


I’m collecting his ashes on weds kind of dreading tht bit to I just didn’t know what he wanted he wouldn’t talk about it so we will bring him home till we know . It is a horrendous disease the man prob needed a break its full.on caRimg so hard to watch to . My hubby was born in Newport in Wales but was adopt so came to England hope u have a chilled time away hope it gives you comfort x

Dear Hello,

Thank you so much for the good wishes :heart: :heart: xx

Sorry Helly, meant to say helly, flaming predictive text! xx

Ah Gary,

So very sorry to hear about your wife - if there is a god up there he sure has a lot to answer for. To watch somebody you love with a terrible illness is the worst thing. Please don’t worry about getting upset on the flight to Majorca - you probably will but only because you loved your wife so much. I don’t think there has been a day in over two and a half years when I haven’t cried.

I hope leaving some of her ashes there brings you some peace - my thoughts and prayers go with you :disappointed_relieved: :heart: xxx

Thank you Lesley.
I get a lot of comfort reading the messages on this site. It makes me realise I’m not on my own.

Take care
Gary x

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Thts ok hun xx

Hi Helly,

We had a lovely day in Llandudno (just a few tears from me). We went to the exact spot at the Orme where we had scattered some ashes. My sister said to me ‘Eddie didn’t tell you what he wanted because he knew it would upset you’. He did tell my daughter though - she’s a bit tougher than me though she loved her dad fiercely.

We sat on a wall near where we had left the ashes, then a butterfly went by, and then another landed on my knee and stayed there for a couple of minutes. I so hope that was Eddie letting me know he is okay. We can only hope :pensive: :heart: xxx

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