Trying to cope with imminent bereavement

Hi, this is my first post and not sure if it is what people want to hear. My husband has Primary Progressive which ha taken him from me in just 2 years. He isn’t dead yet but it won’t be long now, because of where his plaques are (right frontal lobe) I lost the man I married a while ago, something unexpected and hard to deal with, a bit like Altzeimers I think only he has just turned 50.

My reason for sharing is that I had a dream last night and woke up with a poem about loss and grief in my head. While sad I feel it may give partners and family members a bit of comfort. I didn’t expect MS to take my lovely husband so quickly, I was prepared to have home in wheelchair for years and that was something I felt I could manage well enough. The personality changes shocked me to the core and his confusion and memory loss is tragic in such a young man. Here are my thoughts on what is happening to us now.

I dreamt of death and loss
Of rot and the passage of time.
Then a breath and we were coming together,
To renew and remember.
You were a child and a lover,
I was a mother and a man.

The loss, the grief, oh God how I cried!
A breath and you were there;
How I wanted to touch you, hold you
But it was not allowed,
As if protocol kept us apart.

A breath and all seemed clear
A fog lifted and you came into my arms.
I held you as if to never let you go.
You were whole and healed and lovely.
There were gifts of never to forget
Tokens of memory to keep and cherish.

A breath and you were gone;
I woke, trembling, feeling my surroundings
Not wanting to feel the misery of grief
And the ache of being alone
Then I realise, I need no gifts or tokens to keep you
For you are in my heart and you make it smile.

1 Like

Hello Suzy.

So sorry for what is happening to you both. I found your words very moving as I lost my husband four years ago, far too early when he was 59, although not to MS. We had plans, things we were going to do in the future, in retirement, and in a heartbeat it’s spoilt.

I don’t have anything useful to say really except that I wish you strength.

All good wishes to you


Hi Val, thank you for your reply, I think the only I am looking for now is sharing, I have a good support network with family and friends yet somehow to be able to put thoughts down here seem to be cathartic. I can do no more than wait and be with Mark as much as I can. Although sometimes it seems to me my presence causes more anxiety than comfort.

Thank you again and take care

suzy x

Sending my best wishes to you both, it must be very hard for you to see him like this.

Jan x

suzy thats so beautiful,sorry you are going through all this.


J x

I thought I would update this page, Mark has just recovered from a chest infection, we thought we going to lose him but he has rallied and is stable for the moment. At just 8 stone it’s hard to know how long he can carry on for, yet I understand anorexics can go down as low as 4 stone before organ failure. I pray to God that this won’t apply to Mark as it is heart-wrenching watching him slowly deteriorating.

I keep going to see him, taking him high calorie treats, tirimisou seems to be a favourite.

I try not to think of the time he is no longer with us and my purpose has ended. I know that’s not really so but as my focus is on him for the most part - after, is going to seem very empty indeed.

I have planned a trip for next year, I am going to walk the Pennine Way, as a sort of pilgrimage, hopefully that will help.

It it feels good to write these thoughts down, thanks for reading.

I’m so sorry Suzy. So desperately sad :frowning: . MS is such a vile insidious disease.