Trying to cope with imminent bereavement

Caring for someone with MS
1

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
3

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

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

Jan x

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

((((((((((((((((hugs))))))))))))))))

J x

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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.

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