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Is my mum dying? - Carers UK Forum

Is my mum dying?

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Hi my mum has severe MS and has had it for almost 30 years. She vs now at what is called end stage MS? She is struggling to swallow food and liquids. In addition for the last month she has been very poorly with a urinary tract infection/chest infections. As a result she has drunk very little and eaten very little for the last month. She is very anxious and restless. She has been calling out for my dad who passed away 2 years ago and saying things like 'I've had a good run haven't I' She has also decided she does not want to return to hospital or be peg fed. The nursing home (not the doctor) have told is they think it is the beginning of the end and it's about making her comfortable now. However 2 days ago her meds were reviewed. She was given stronger antibiotics, a sedative to calm her down and a morphine patch for pain. End of life meds have been discussed but not used. Since yesterday she has seemed a lot brighter and more positive. She has eaten a mashed up boiled egg for breakfast and some soup for lunch. Yesterday she passed 800ml of urine as opposed to 200ml the day before. She is talking better and says she feels better. I just don't know what to think now. Is she 'rallying? Is this a temporary improvement? Or is she responding to the meds and actually getting better? Has the sedative that's calmed her down masking the other problems? Is it likely that she will still die? Any help or advice would be appreciated?
Hi Kimberley,
This is a horrible time. I suggest that you Google "Signs of Dying". There are some really good articles written by people in the hospice movement, which explain what happens when a body isn't feeling too good. Just typing those words made me cry, when I knew my mum didn't have long left, but the articles were so good that I could support mum much better with the information I found. The section around food and drink was especially useful, I just wished I'd been told about these articles when mum in law was dying, years earlier.
Just in case, have you thought about which funeral director to use? Again, that's a really tough issue as well, but if you find out details in advance, and say "when mum's time comes, it's so, so much easier than when you have to deal with the matter suddenly.
Once you've done both the above, just try to make the most of however many weeks or months mum has left.
I would agree with BB. This is, indeed, a truly dreadful time.....

I think it is impossible to forecast just what is happening. I can remember my mum's GP saying to me that she had 'maybe 4-6 months left'....and she died less than 6 days later.

With my husband with terminal cancer, our GP said he could go 'anytime' or he could last for weeks, maybe months.

The truth is, no one really knows, and maybe even the 'body' of the patient doesn't know either. Dying isn't an 'all or nothing' thing, as in, it's not like it's a one way ticket with no stops or delays on the way, no 'speed' to travel at. After all, in the biggest picture we are 'all' dying....we just don't know when. For someone with a clear medical condition, obviously that 'don't know when' can be closed down and 'finalised' quite a lot, or limits put around it. For example, it's unlikely your mum will live for the next five years, but although the doctors can give a 'reasonable expectation' based on their experience of others with her condition, at her stage, at her age, etc etc, it's just 'statistics' really, and some patients do better than expected, and some worse. (My husband was not expected to go as quickly as he did, as 'other complications' set in to accelerate his decline).

I would say, in the end, 'go with the flow' ....maybe that's another way of saying 'Prepare for the worst, but keep hoping for the best' and somewhere along that line what will happen will happen.

Treasure each day with your mum now, and be glad, do be glad, that she may, yes, be rallying, but that even if she isn't, she seems to be enjoying a little better quality of life than she was a while ago. The main consideration overall is that she is as absolutely painfree as can possibly be - I would rate that higher than anything, but, again, that is HER choice. She may prefer not to be 'drugged up' so as to make the most of this time, including the time she has with you.

One final thought...PLEASE do not be upset if she 'slips away' without you being there. This happens SO often when our parents die - nurses always report it, as they see it happen time and again. It's as if, maybe, a parent can't bear to leave their children, and so 'cling on' while the children are there, but, when the son/daughter leaves the hospital (sometimes even just leaves the room for a few moments), the ailing parent feels they now 'have permission' to leave this difficult life, and find the peace - and, as we must all hope - the 'rewards' beyond this life......

This is a very 'special' time, and you will remember it all your days. Expect to have your emotions like hurricanes sweeping through you, so do not worry about what you are feeling, or how, or whether you should be doing this, that, or something else. Go with the flow, and let your mum's ailing body find its own way now, whether to 'rally', or to 'let go' of the hard work of keeping her alive.....

With kindest thoughts, at this so distressing time - Jenny
A proverb I've always found strangely comforting is this - it's from the Arabic I understand.

'Until my hour comes, no man an slay me
But when my hour comes, no man can save me.'

To me, that takes away the 'responsibility' of worrying when, and how, we say our last goodbyes in this world.
bowlingbun wrote:
Fri Mar 02, 2018 3:41 pm
Hi Kimberley,
This is a horrible time. I suggest that you Google "Signs of Dying". There are some really good articles written by people in the hospice movement, which explain what happens when a body isn't feeling too good.
I probably shouldn't have followed that up just as I'm about to go to bed.
Probably not, alas. Things always seem more emotional, and often 'darker' in the night time.

For all the 'right reasons' we in the West tend not to be very experienced about handling death and dying, as we see so little of it by and large (like I say, for all the 'right reasons'). For so many of us, losing a parent will be the first time someone we know well, and love, has died, other than, perhaps, when grandparents died when we were children or teens etc, when it was more 'emotionally distant' from us.
Hi Kimberley
I hope you managed to get some sleep after googling last night. I've recently been through a similar situation (dad had dementia) and I did find that being able to recognise things for myself instead of relying on being told by the professionals was very helpful for me. Sending you my best wishes at this difficult time.
Kimberley, you will find a grat deal of support here, from others who have made the same sad journey. You can ask us about anything you are not sure about. Sometimes, especially in hospital or a nursing home, everyone is so focussed on the patient they just don't see an emotionally and physically exhausted carer. Make sure you look after yourself, especially eating and drinking. If you are having trouble sleeping, the doctor can give you something gentle to help.