MS Society UK | Forum

Life expectancy in end-stage MS

Hello everyone! My mother (57) was diagnosed with MS 14 years ago and since then her situation got worse and worse. For the last 7-8 years she wasn’t able to walk and eat without assistance.

Now, she is totally bedridden. She cannot communicate except saying few basic words like “yes/no/hello”. She can’t chew and swallow effectively. I’m assuming her EDSS score is somewhere between 9 or 9.5. Her main caregiver is my dad (64) and I’m so sorry for both of them. I wonder how long this burden will go on? The doctors don’t say a word about life expectancy but it just kills me seeing her like this. So I’d like you to ask about what should we expect? How long one can live in this situation? 6 months? 2 years? 5 years? 10 years? Of course we can’t tell certainly, but if you had gone through the same experience, I’d like to hear about how long your loved-ones lived at the end stage… Thank you very much.

Hello @aysebt welcome, I’m sorry to hear about the problems your Mum is experiencing. That must be so hard for you and your Dad to watch.

I don’t think anyone can say with certainty ‘how long’ someone has got. Does your Mum have an MS Nurse? If she does, get in touch with her and discuss the situation, or anyone else in the MS team if she has one. The Neurologist would be the best person to give an opinion from a medical point of view, so please make contact with them also. If you just need someone to talk to, try calling the MS helpline on: 0808 8008000

Are you and your Dad getting any support for yourselves? It’s really important to be able to offload to other people about what you are going through. Being a carer is hard work, both physically and emotionally.

I just did a search on the web and found this, it might be useful:
//mstrust.org.uk/a-z/end-stage-ms

Kind thoughts
Willowtree

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thank you very much for your kind answer :pray:t2:

Seems to me your mum has been let down for 8 years by the medical profession. 14 years with MS is nothing in the grand scheme of things. I had first symptom in 2020 and still mobile although i have PPMS, but i know a ton of people with MS who have been supported really well throughout and yes some cant walk without aids and need help with toilet but for your mum to be this advanced so quickly in my view is down to NHS and social service neglect.

I may get shot down with this, but why is your dad doing it all on his own? I am assuming this is the case? I would ring your social services local ADULT TEAM and get urgent advice. It could be that your mum sadly may be better and safer in a home i know not nice to contemplate as governments want us at home, but if not a home she should have a FULL CARE TEAM with her. Also who is montitoring her she must have help with bladder and bowels etc, so who ever it is talk to them, she cant just be left bedridden without help.

Your father bless him needs a care team to help him. ITS YOUR MUMS RIGHT to have one.

Your mum is still young i wanted to cry she is only 57 my daughter is 50. so at 50 she was written off your mum basically.

PLEASE get active FIND OUT what has gone wrong. ADULT SOCIAL SERVICES URGENTLY.

you dont die of MS you die with it and its usually things like urinary tract infections etc and immboliry that is the caralyst AND she must be treated for bed sores too surely. so the answer to one question is this HOW LONG IS A PIECE OF STRING.

xxxxxxxxxxx if i ever became a burden to my family i would want to be in a home not a burden to them. they have a right to their own lives. but thats what SOCIAL SERVICES ARE THERE FOR. not just to help children but adults too.

BIG HUGS. and give your mum an extra kiss i am sure she would appreciate that. xxxxxxxxxxx

Aw Aysebt, I am sorry for your whole family. MS is dreadful. It takes and takes from so many of us.

The trouble is that MS is such a contrary beast, it’s often been said (by me quite a lot), that MS does what it wants, to whoever it likes, whenever it fancies.

There are no rules as to how long it takes for MS to take an individual to the end stage. For some it’s 10 years, some 40. For many others, never. As far as I know, there’s no time scale you can really judge how long ‘end stage’ will last.

It must feel utterly dreadful, to want your mothers suffering over, and yet to not want to say goodbye. For your fathers sake, not to mention your mothers, I’m hope the situation does not continue go on as it is for long.

I’m sorry I have no direct experience to offer you; just my sincere sympathy for the situation (as you say, the burden) you and your family are in. I cannot imagine anyone wanting to end their life this way and yet it could happen to so many of us.

Sue

CC, I know where you’re coming from, and it’s (as usual) the right place. But some people do deteriorate with MS very fast comparatively. Plus, people do die OF MS, I know it’s been said again and again that we ‘die with it’, but there’s a reason the EDSS has a score of ‘10, death due to MS’. People do die of it.

It is often as a result of complications, eg pressure sores. But can also be due to breathing problems and other such direct results of MS itself. Dying from MS, whether because of infection, sepsis, DVT or inability to breathe, is horrible and distressing. Coupled with cognitive issues it’s frightening.

Scary to think it could eventually be me. But being honest, I know it could be.

Sue x

no i agree i said it is down to things that complicate that will take you in the end either way, and yes your right people can deteriorate fast but i dont find that comforting the issue is WHY is her father doing all this on his own? for me that is the issue. i had a friend just as bad as this person with her MS and she was given a ton of care and rallied and actually got better for several more years. it took a long time, but proper care can help and not only that if she is EDSS 10 she should be offered hospice shouldnt see?

we all die in the end but we shouldnt have to be a burden on our family whilst we are sick, this man needs HELP urgently imho. xxxx

Think is CC, you are always very good at honing in on practicalities. My response is sometimes more emotional. Both on the same page, just small differences in ways of trying to do what we can to help.

This family obviously need both your kind of practical thinking and a bit of emo propping up. Probably the OP wants to know some finite ‘how long can this go on?’ answers. The reality is that because we just don’t know we try to say what we can that might be of some use.

It’s a flipping sad situation. MS sucks.

Sue

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it is down to army brat training and being married to a service man. Practicalities got you through it all, emotions never did lol. I could pack an MFO box in record time, and be ready to move at a minutes notice. I knew who to talk too and how to talk to them.

I taught in the community I.T. My lessons were pratical and easy for them to understand i always tried not get let emotions get in the way when someone couldnt get how a spreadsheet worked or how a image was inserted. If i got emotional it would achieve nothing, i had to booster confidence. show them where to get help on the internet.

If you can sort out the practicalities it then means the issues have been resolved. I.E. the parent gets more help, the father has more rest, and the person worring can worry less and enjoy what is left of someones life. That is how i have learnt to cope.

I still help a lot of people on the Internet by showing them where to find help. i guess its just habit.

thought i would treat you with a Leo image. see i am a LEO too.
dont forget to get my best side