Coping with a parent’s slow decline and uncertain prognosis

[AlwaysBrighter]

My mum was diagnosed with stage 4 breast cancer with brain, bone and lung metastases at the end of December 2024 and has been declining since then.

She is now in the final stages and is being cared for at home by her partner. She has significant neurological symptoms and is declining very slowly. One of the hardest things I'm finding is the uncertainty around prognosis and end of life. The palliative care team have given estimates but she has consistently outlasted them. I feel like I have been bracing myself for months and she keeps going, which is both a relief and its own kind of exhaustion. I don't know whether to expect weeks or longer and the not knowing is relentless.

Has anyone else experienced a long slow decline with uncertain prognosis? How did you cope with not knowing and the anticipatory grief? And how did you manage to keep going with normal life alongside it? I’m only 28 so feel quite isolated compared to my friends and it’s a lot to carry.

It's hell. I've stopped calling it "anticipatory". It's just grief. You grieve every day as you lose them little by little.

You have to take it one day at a time and don't think too far ahead. As pp said, you are grieving now. I found that talking to people going through the same thing was the most helpful. It's hard losing someone you love so gradually.

@Justbecauseyoucandoesntmeanyoushould this is so true, I’m so sorry if you’re going through similar :(

@unsync the limbo period is so relentless, I think taking things day by day is good advice. It’s so difficult.

In a similar situation OP. It’s awful isn’t it. Little things like not booking a holiday this summer, crazy things like wondering if it’ll happen before my bank card expires & scary things like what will the end look like. I feel I’m living under a dark cloud that’s getting heavier each day. All I do for sanity is lots of exercise & seek times for filling my cup with joyful things.. but the shadow is always there. Sending support to you. You’re not alone.

Yes been there, and felt the limbo/ grief but not able to grieve properly until the end. Several years later, I no longer think of that time and only think happy thoughts of them before the illness. A friend reminded me of something that happened at that time the other day and it blind sided me as I’m so used to not thinking about it. This difficult time will pass, but until then, be kind to yourself, do what you need to keep yourself going and don’t beat yourself up if your feelings in the moment don’t match what you think they should be. There is no right or wrong for grief.

I just saw this and found it strangely comforting https://www.instagram.com/reel/DYxgHiRpiK7/?igsh=MXJoNHB6N3duamxqMQ==