End of life

[jelba]

Mum been end of life for a while going up everyday to see her been using my holiday up at work. I'm in a catch 22 situation we're I want to go to work but if I'm at work don't want to be there if things go wrong. Mum still eating and drinking but her face is thin and legs and wrists are both thin. I lucky I got enough resources so time with mum not a problem but I feel so worn out I'm my self and don't know if I can do work and mum together at the same time

Thanks

 

[Louise7]

Hello @jelba sorry to hear of your situation. My mum is also deemed to be at end of life stage but this can last quite a long time and, like your mum, mine is still eating and drinking. It's a difficult time but you do need to take care of yourself too. I work full time so visit mum at the weekend, and sometimes I take a day off during the week if I can, to go and see her, but I know that the care home staff would let me know if there was any sudden deterioration. It won't help if I get so worn out that I get ill and can't visit mum, and perhaps you need to consider reducing your visits for the time being? I'm sure that your mum's care home would let you know if your mum suddenly got worse. Going very day must be so hard for you, look after yourself too.

 

[canary]

Hello @jelba

When someone tells you that they are at end of life, you naturally think that they will pass away within a few days, but with dementia this doesnt usually happen. The term End of Life doesnt always mean that they are actively dying, it often simply means that they are at the final stage of dementia and that after this stage they will die. But there is no knowing how long this stage will last. It often goes on for several months - occasionally it can be a year or more. Or they may suddenly deteriorate after a few weeks. You just dont know

When someone reaches the actively dying stage there are several physical signs that show this and assuming that the home she is in is used to dealing with the actively dying stage, the staff will recognise this. It does not happen quickly. TV always shows people dying in a few minutes, but with dementia everything closes down slowly over several days. With my mum I was told that she was dying, but it was still 3 days before she passed away. She had stopped eating and drinking completely 17 days beforehand. Unless she dies from something like a heart attack there will be time for you to get there
xxx

 

[Collywobbles]

I’m afraid this stage of dementia is quite unpredictable. Please don’t beat yourself up that you can’t be with your Mum as much as you want to. In reality, I think relatives are generally not with their loved one when they leave us. We may be conditioned to think it’s expected of relatives to gather at the bedside, and of course we’d all prefer to be there, but the reality is that it rarely happens. In fact from posts here, sometimes folks can cling to life while family and friends are around them, and only let go once they’re alone. That’s just my feeling though.

My Granny was deemed “end of life” for 18 months before she passed, after doctors had given her weeks or months to live. Even then, we had a an alert from the care home one evening that she would probably pass during the night, but next morning she woke up and ate breakfast. She passed in her sleep a few weeks later.

 

[Eare]

My mum has been end of life for almost 3 years now. Last week she stopped eating and drinking for 3 whole days and I was sure this was the final leg. I kept offering food and drink and after 3 days she started eating and drinking again back to normal. It's can be a very long roller coaster ride for everyone and exhausting emotionally.

 

[Jane3]

I feel your pain mum on end of life for six weeks now and I haven't been back to work yet as I live and work 3 hrs away. I am with her every day . Its an impossible situation and harrowing watching them waste away.