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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

Hello Sue,

Thank you for your helpful message, sorry I didn't reply sooner. The past few months have been very up and down.

My Mum passed away at the weekend. She was with my Dad and all 3 of her daughters at home and she was so peaceful.

Wishing you all the best,

Nayna

Hi,

I hope I may be able to give you a few pointers, I was getting close to the stage you were at, before the cruelties of fate overtook us.

My wife Kym was, I was told, by hospital medics and her consultant in 'the twilight of her life, and that she may not have long to go, that she may not be able to survive 'further episodes' '. The consultant put us in touch with the local hospice, that they would make contact with us 'because we would need their help, most likely sooner rather than later'.  I took that to mean palliative care but I was personally in denial of what I was hearing, wanting to tell him, Kym was doing well, that I and her live-in carer Juliet were looking after her well but I accepted his guidance, thinking well Kym can at least enjoy going to one or two social events at the hospice if nothing else. This was all pre-Covid, but had been discussed and was being acted upon in Dec 2019 - Jan 2020. 

Kym was bedridden, totally dependent on the carer and I for support. We had been successfully peg-feeding for 2 years but also giving Kym orally, things she liked (mashed food/puddings etc). In terms of POA's, I had successfully got the Financial POA and was having to re-apply for the health one. Kym was mentally fine, so I was able to discuss how the POA's were useful. I found I wanted to discuss certain key life and death issues with Kym so she knew what was happening in relation to her health, but I wanted her to know I was always going to be the one who would fight the most for her. Whilst I would have let palliative care nurses in to assist Kym, I would have always wanted to be in control, as her primary carer and husband. I had discussed with Kym, about non-resuscitation protocol in hospital, and I guess the next stage for us might have been, should Kym be moved into a hospice and I know I would have fought tooth and nail for Kym to be looked after at home. So in short, I tried always to discuss things with Kym, so she was always in the picture about what the medics were saying, and I wanted her to know she always had me supporting her through everything. 

Things got taken out of our hands, because Kym picked up an unexpected illness in late Feb which came on without warning. I thought she had suddenly got a chest infection but it was diagnosed as pneumonia and sepsis, infections she had successfully fought off before, but in this case, it was acute and she died in hospital peacefully 22 hours after being admitted. It was a tremendous shock to me and especially hard as we had tried to protect Kym taking every precaution daily throughout the winter. I couldn't believe she would go so quickly. 

How have things progressed with your mother ? I would like to be a help if I can.

Best, Matt

Hello Matt,

I'm so sorry to hear about your wife Kym. All my thoughts are with you and I hope you have all the love and support you need around you.

Thank you ever so much for your helpful message, I'm sorry I couldn't find the time to reply sooner. My Mum passed away at the weekend. She was at home with us all and she was very peaceful.

Wishing you all the best, please don't hesitate to make contact if you'd like to chat.

Take care,

Nayna

Dear Nayna,

Sorry its taken me a while to reply, I needed a little time away from the forum and am feeling stronger now. 

I was also sorry to hear you had lost your Mum as you did, but I felt warmed to know she was at home with you all with her and that she was very peaceful. It reminded me of how Kym went, with us all around her hospital bedside and with her going so peacefully too.  Its coming up to a year this month and there still isn't a day when I don't think of her. It is getting easier though. 

Thanks for the offer of a chat, if I find a time when I'm feeling down, I may take you up on the offer!

Best,

Matt

 

Dear Matt, I`m so sorry you lost your dear wife, despite your very best attempts to keep her safe.

You did all and more, than you could. It is a sad time for you.

much love Boudsx

Dear Bouds,

I just wanted to say I appreciated your comments above a good deal & they have helped me. 

Best, Matt x

 

Nayna and Matt, I am so sorry for your losses.  May you both find peace in time.