Motor Neuron Disease

Although I joined the MND Association, I haven’t been able to find a forum for the bereaved family. If anyone else out there has lost their spouse or parent to MND, how are you coping. The caring that my darling husband needed was exhausting but now I feel without purpose. I neither have him to enjoy life with or to care for and cannot see any point to my day. I miss him so much and he only lasted 7 months after confirmed diagnosis dying on 18.9.2021. I had cared for him at home without help as that was his wish but in the end he had to be admitted to hospital with pneumonia, unable to eat or swallow and died on the third day alone in a side-ward as I was not permitted to be with him due to Coronavirus. I always thought I would be with him, comforting him and looking after him to the end and this is now breaking my heart.

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Hello, I couldn’t go past your post without saying how very sorry I am that you’ve had this terrible experience. MND is so cruel in every way and my sympathies on the loss of your husband are heartfelt.

It seems the thought that you let him down by not being with him in his last hours is what is eating away at you, quite understandably. Physical presence is felt to be vital at this time, for us the living; and yet for the person who is leaving us they are often too deeply medicated to know this.
You sound an amazing wife and woman, nursing your husband must have left you exhausted and as you say, left you with no purpose to occupy you or give meaning to every day. It is I’m afraid small steps, and reaching out to family and friends although necessary, is not easy.
Tattyhead, I’m sure anyone who reads your post will be touched by your pain. All you can do is remember you were dearly loved, and in turn must have been such a comfort to your husband, sorry I don’t know his name. Thinking of you with much sympathy, Miche