End stage what to expect

Caring for someone with MS
1

Hi, is there anyone here who has been through the end stage of primary progressive ms with their loved ones?

My mum has been bed bound for 2 month now, and has been in hospital for 5 weeks of this due to a bed sore. Since being in bed she drastically went down hill, everything from the neck down has stopped working, shes unable to eat meals anymore, just manages to eat a cup of soup here and there, if we are lucky. Her vision has gone, her memory has gone, the delusions and confusions have began.

Today in hospital they confirmed my mum is at the final stage of ms.

But what does this mean really, what am i dealing with here? Is she dying? How long do people at the stage last for?

I know its impossible to give a a time frame on this kind of situaiton but i feel like i am living in limbo have we got weeks months or maybe another couple of years left yet.

Thanks for reading.

3 Likes
3

Hi, thank you so much for your reply. Unfortunately my mum passed away on the 3rd of july.
And through my experience of how my mum was cared for during hospital with her ms and all the complications it brought, i feel like she was failed and nobody understood ms and how to best care for her needs. Its been a rough few month. More needs to be done to understand end stage ms and how best to deal with it.

1 Like
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So sorry for your loss xx

6

I’m very sorry to hear of your mother’s final stages of MS and passing.
It is sad to think of all sufferers’ last days with the illness.
Best regards,
JP

1 Like
7

So sorry for your loss, may your mum be at peace now