How to function when end of life for your Mum is approaching

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Hello,

My mum has battled a very rare form of Peritoneal Mesothelioma for the past 6.5 years. She has had numerous rounds of chemo, radiotherapy, clinical trials and in August 2021 had a major debulking operation. Removal of her large bowel , peritoneum, muscle and then hot chemotherapy into the cavity.

What we thought was a poor recovery ( as she is 70) was actually the cancer becoming aggressive due to the operation . She is incredibly frail, struggles to eat, is sick a lot and generally wasting away before my eyes.

Yesterday it was confirmed she has multiple more tumors in her abdomen, some in her lung and also spread to liver.

Her oncolgist said her gooodbyes and said she wont see her again as its down to palliative care now.

I am devastated.

I have autism and am struggling with the not knowing when it will happen as I very much need routine and control to remain well.

I would appreciate any help in how to function and deal with living in this situation.

Thankyou

Yorkshire_defector over 2 years ago

Hi Vic

I’m really sorry that I can’t answer your question specifically re how to function & deal with it but wanted to let you know that I am going through a similar situation. I am just by my father’s bed who was given a year to live August 2020 so is doing well (!) in the scheme of things but is getting rapidly close to the end, which is heart-breaking to see.

I’m spending as much time as I can with him, trying to help but feeling quite useless and trying not to take personally his increased frustration at not being able to communicate (he can hardly talk any more). I’m also mindful that my poor step-mother is taking the brunt of the impact of my father’s condition so am trying to give her time off too.

I think it’s important that we look after ourselves so am trying to get to the gym/go for walks/bike ride when I can and eat well too. Although I don’t have the same condition as you the not knowing timescales is painful, as is the knowledge that my father no longer wants to live given he has no quality of life anymore.

Anyway, am sure you know you’re not alone on here and if you need to rant there are others in a similar (ish) situation.

Stay well.

Sam

My secret? Being daft & staying positive.

LadyLizzie over 2 years ago

I’m so sorry to hear you and your mum are going through a tough time together.

once you’ve seen the palliative care team ( if they haven’t seen you already ) you will have some kind of idea of the care they’re putting in place for your mum. It will become you’re new routine ..visits.. carers .. etc. things to do.
it will very much be governed by how your mum is from a daily or weekly perspective.
Think of your own routines and what you like to do. Keep them where possible if you’re in your own home. If you’re at your mums try to do the same. They say be kind to yourself and it’s very true. Rest when you can .. eat and sleep as you usually do. There may be times when things are unexpected. Do you have different coping strategies when something like that comes along. You’re not alone in any of this and if you make the palliative care team know of your own concerns for yourself they will support you too.
I lost my partner a month ago didn’t want him to die at home and didn’t know what to expect.
As it happened he passed away very peacefully at home with me by his side. I wouldn’t have had it any other way.
be kind to yourself and ask for support too.

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How to function when end of life for your Mum is approaching