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