Many of you will have read my story - finding it hard to tolerate my husband’s behaviour, violence etc. He was doubly incontinent, unable to move his legs or right arm, and was fast losing the ability to chew and swallow.
Sadly on Wednesday he developed a tickly cough - which swiftly turned to pneumonia, and tragically he died in the early hours of Friday morning. He was 43, and leaves me and the little people (aged 8 and 5). Such a long time suffering (7 years since diagnosis), and then the end seemed very quick - although I am pleased his suffering and constant pain is over, I feel like it’s going to take me an age to grieve for the man I really lost 5 years ago.
Ms must be the cruelest disease known - no real prognosis (“everyone’s different”), constant pain and daily fluctuations in health (which made it virtually impossible for us ever to plan anything)…
…so I leave you for the moment, to take care of my “babies”… I’ll pop in some time down the road to see if my experience can help anyone else.
Thank you everyone for advise given to me - it was desperately needed and gratefully received
Although I don’t know you personally, my thoughts and prayers are with you.
Take care of yourself and your babies.
So sorry to hear your sad news, I hope your little ones keep you strong. I have read your previous posts and know how much you and yor children have been through. Try and think of all the good times you had before this horrible disease took him away from the man he was. Take care you are in my thoughts. Karen
Words are never adequate at a time like this. He was too young, you are too young to have coped with it all and your children are too young to lose their Dad. I’m thinking of you all and hope in the future there are some happier, brighter days ahead.
You and your husband have had a hard road to travel in recent years. May good memories of better times together sustain you in your loss, and may knowing that you did everything you possibly could (which, my Goodness, you did) bring you comfort.
I am so so sorry that this has happened. My thoughts and prayers are with you and your children.
When some time has passed maybe you would come back to the forum. Your experiences could help other carers in similar situations.
Thoughts are with you remember the good times and not the bad - you choose your memories and take comfort in them. My heart goes out to you and your children
so sorry you have Had to go through so much,i lost my husband to heart disease,when my daughter was very young,so my heart goes out to you all,i hope you can all find some peace now,you will stay strong for your little ones,i know i did,my 2 kept me strong. xx
hello my love, oh dear, what a sad time you and your children are having. You and I pm`d each other and so I felt I knew you a little more.
As difficult as it was for you and the little ones, now will be a time of refelction. I hope you dont dwell on the worst times. You did your best and I`m sure your hubby knew you loved him, despite all the bad times.
I`m sorry I have only just replied to this post, as you may not see it. i only saw it today.
Look after yourself. You deserve a rest now.
Hell my love,
So sorry to hear your news. I am sure that your husband knew that you weren’t angry at him, at the disease that was changing him.
Remember all the good times that you had, let those precious memories sustain you in the hard days ahead.
Look after your babies and remind them of the good life your husband had before MS appeared.
You need to rest now. I wish you all the luck in the world.
So sorry to hear your sad news, look after your babies but also remember to look after yourself. Will be thinking of you.
I am so sorry for your loss. MS is cruel as it sometimes takes away the person we knew and loved years before they actually die. I hope you will take comfort in the fact that you did everything you possibly could to help him.
Thoughts are with you.
I am aware that words are so inadequate at this time, but I want to add my voice to those wishing you well and hope you will find comfort in due course, in looking back and remembering the good times. Thank you for so generously sharing your experience on these boards, as you have done for some years now.
Wishing you well; look after yourself and gather those little ones close
It has brought tears to my eyes, everyone being so kind here.
Xmas was a little quiet - but I hope I successfully kept things going for the little people.
The funeral was on Friday - my littlies did SO well - I was so proud of them, sitting through the service. They were both close to tears - the littlest helped me with my tissues when my tears got too much. The eldest skipped the wake (“mum, I’m too sad at seeing the photos of dad”), but the little one stayed the whole afternoon, and charmed everyone. As the eldest said “mum it was a very sad day, but at the same time quite happy because everyone was there for dad”. Sometimes he amazes me the wisdom he has for just being 8. I was amazed at the number of people who came - over 100, in fact the chapel was full, and people had to stand outside. One of my husband’s friends also has MS, and it was lovely to see him, and be able to offer assistance to him too (I’m donating our wheelchair hoist and outside electric wheelchair to him - It was something that helped us as a family to be normal, in that it enabled us to do days out, as a family)
Tuesday will see us back in routine mode again when school resumes. Both the kids are struggling a little with sleep, the eldest the most, it’s truly been a shocking year for us all - I still can’t believe that 9 months ago my husband was able to stand to transfer, and now he’s gone. I know I’m going to find it odd on Tuesday - no doubt all the legal paperwork for probate will keep me busy!
Thanks to everyone though - caring can seem the loneliest job in the world. For months I only ever went to the school or the supermarket, because my husband was so sick. I’m not even sure I know how a 41 year old should be! But you guys have shown me that support - whether remote or in person - is all important.
Hi love. I`m glad you felt able to come back and tell us how things are now. Your children will need some extra love, I guess. Just to reassure them that you arent going anywhere. I hope their school is helpful too.
Look after yourself.
Its so sad i feel for you and your children i hope your pain eases with time ,My husband has ms and we have little children also xxxx julie