I lost my husband yesterday morning and feel so guilty. He had rapid progression Motor Neuron Disease and was diagnosed in August 2022 - by December 2022 he couldn’t speak, walk or feed himself. Over the past year he has got progressively worse and was tube fed and communicating via eye gaze. The problem is I got so angry with the situation and would often take it out on him and say the most horrendous things. He was in Sue Ryder Neurological centre for the past couple of months due to the number of carers he needed (his decision) and constantly suffering from breathing difficulties and infections and I know he wasn’t happy. He so loved Christmas and this year was so difficult for both of us. I saw him on Thursday and we (or me) ended up having words due to the way a family member was treating him. He told me to leave and I said I wasn’t coming back. I have just been looking through his gridpad and he told someone that we had argued and I said I hoped he died alone. I don’t remember saying this as I was very upset. He didn’t die alone - I was with him and he was in my arms but I feel so guilty that i didn’t deal with this situation better. MND robbed him of everything and I was so angry that this had happened to him and us. I’m sorry if none of this makes sense but I just need to know I’m not a horrible person
@Magpie19 . So sorry for your loss. You are not a horrible person. It must have been so difficult. We become different people when we are stressed or in pain. At least you were with him. I feel so guilty that in my husbands last days due to physical limitations I could not stay with him and he died alone in hospital. My last memory of him is tossing and turning in a hospital bed. Looking yellow. Not knowing I was there. At least I got the nurses to make him more comfortable and give him more medication. Months before I was in hospital and he was with me for hours every day.
Guilt is part of grief. Just try to focus on the good times you had.
Xx
Sandra
@Magpie19 of course you aren’t a horrible person, you were at your wits end. I don’t have experience of MND but cancer is awful too and during his illness my husband and I said horrible things to each other. And at first those things were at the front of my mind, but they do recede, albeit slowly.
It’s very early days for you, so look after yourself. Sending love
I behaved just the same as you did. my husband had dementia and emotionally I was so bereft that i got angry and said some awful things and then i used to sit and cry with him. He wasn’t in the late stages of dementia but it still flattened me. he died 16 months ago and i am still bereft sand full of remorse and some days just feel so hopeless so don’t just think it was you… other people behave in similar ways.
@Magpie19 - you have been through a horrendous nightmare, from watching your husband decline so rapidly because of that horrible disease, to being separated because of his need for so much care. That alone is a huge burden to carry.
You are under so much pressure, both then and now, and it is not surprising that you lost your cool from time to time. Your upset and anger were because of the circumstances, because of his suffering, because everything around you was so bad. You kept going throughout this, kept going to seeing him and you held him close at the end.
You are not a bad person, you are strong person. You are not horrible - you are kind, generous and determined. What makes you you will get you through this. As @Pudding says so wisely, focus on your love for each other, on the good times you shared and know that you were there for him from the start of the horror through to the end. Hold tight, keep posting, we have got you x
Thank you. I was just the same. I’m just torturing myself that I should have been better but it was so difficult as he couldn’t communicate. He was always the one who looked after me and I feel I let him down
@Magpie19
The grief process is full of “ could have, would have, should haves” and that’s only natural in the middle of such devastation. MND is such a cruel disease and the strain of seeing your loved one go through that is unimaginable. But you are only human, and your love for him made it so difficult to cope. You were there at the end showing him the love he knew you felt for him. Thinking of you, take care xx
I understand how you feel. My partner was in hospital with very complex issues so we were often in the dark. I started a new job that I found difficult, I had two children and a dog to take care of and our shower, boiler, tumble drier, washing machine and my car broke while he was in there. I also had to host christmas alone. I was moody sometimes and I moaned a lot to him and now the guilt is eating me up that I probably made him feel terrible. He was so caring and thoughtful. We are only human though and humans in a very difficult situation. I’m sure he understood.