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End Stage MS

My mum has entered the end stage of MS - she has been bedridden for almost 3 years now, has bed sores, can't move any of her limbs, struggles to swallow/cough/talk, isn't eating a lot and sleeps for the majority of the day due to all the medication she is on (for pain and various other things). She has been admitted to hospital a few times this year due to infections such as pneumonia, sepsis and UTI. She now has palliative care and has decided that she doesn't want to go to hospital again. She lives at home with my dad as her primary carer but also has 2 carers coming in every day for her personal care etc. 

Although we know she has entered end of life stage, as a family we feel a bit lost. We know it's difficult for doctors to give a prognosis but everyday is so up and down we feel constantly on edge and uncertain of when something might happen. My mum's cognition has been affected quite a lot and so we're unsure of her exact understanding of what stage she's at. Sometimes she thinks she can do more than she actually can but other times it's clear she knows she can't do things. For this reason it's hard to talk to her about her current condition when she might not know she's at end of life stage. We've had palliative nurses come in twice to talk to her about their care and the 'respect' form regarding her wishes. She got quite upset whenever death was mentioned and so we're unsure of how to approach this next stage. 

Has anyone had any experience in discussions about death with a loved one who has MS? We don't want to scare her but we also feel that she deserves to know what stage she's at so that she can make decisions about her wishes. We have had discussions about palliative care and what that means but sometimes it's difficult for her to process complex conversations or it seems that she might be in denial and doesn't want to talk about it at all. Any advice would be much appreciated.

Topics Severely affected by MS

Hello sweetheart, oh I really do feel for you all. I am so sorry this is happening to your dear mum.

Normally MS isnt seen as a cause of death, but of course it can sometimes be, as MS weakens the whole body and other things occur too.

I dont know if what I am going to suggest will help or upset you....it is what I have thought about and discussed with my local hospice.

They care for people with cancer, MS and other life limiting conditions. I go there for respite twice a year. Last time I was in (September), they asked if would like to end my days in their care, if the need arose. I said I would.

Their care is second to none. No-one really wants to think/talk about end of life, but it is good to now we have such caring places and not just a hospital who may not give the same loving care.

I do hope my words have not offended you. If they have, I am very sorry.

Love Boudsx

Hello Bouds,

Your words haven't offended me at all, thanks for your support. We're not thinking about a hospice right now but it's reassuring to know that it's an option.

All the best,

X

I have MS

Hello Dutt

I have to admit, I have no experience with end stage MS. I suspect that's probably true of most of us: MS isn't usually seen as a cause of death as Boudica said, but of course it can be. The reason it's not familiar to most of us though is that most members of the forum have MS and it's safe to say we can't experience end of life and advise on it!

What I do know is that it's bloody hard to broach the subject of end of life with someone who's in the process of it. Is it necessary in this case? Has a doctor ever had a conversation with your Mum about end of life? And does anyone have Power of Attorney for health? Do you as a family have agreement (with the beliefs of your Mum in kind) about the end of life?

It's so difficult to start these kinds of conversation, especially when there are cognitive problems. Is it strictly necessary in your mums case to discuss her death? Can you manage to deal with her affairs without talking about it? Does she need to go to a hospice or can she be appropriately cared for at home? What does your Dad think?

I hope you can find a way to resolve this. It's hard enough to face the imminent death of a parent without having decisions and problems like this to consider.

Sue