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==

It is so sad and heartbreaking watching someone you love slowly decline. It is torture

Yes people don’t get that grief is happening whilst they are still alive. I’ve lost the mother I had. She is utterly miserable locked into a situation that can’t be helped. She wants it over and I want it over for her. If she was a pet she would have had a one way trip to the vets by now.

I am in a similar situation. My dad was diagnosed with mesothelioma in October 2024 and I didn’t think he would even make summer 2025 but he had some rounds of immunotherapy and stayed really well until February this year. He’s been on holiday, and really had very few symptoms.
But in Feb he started declining, more breathless, barely eating etc. He had an awful cough in April and I truly thought he was on his way out but he’s still here.
Im happy he’s still here but I genuinely have no idea whether he’s got weeks or months left. Apparently he still has plenty of functioning lung left but he’s eating so little.
Anyway, sympathies, it’s a hard time. Hard on my mum too who is looking after him - he doesn’t need “care” as such, but she makes sure he has all his medicine etc.

My mum also died of stage 4 breast cancer 5 years ago. She had a long period of appearing quite well on medication even after that diagnosis but the last year of her life was a slow deterioration. Much worse for her and for my dad caring for her in a day to day basis but still very hard for us all. There were a number of times where we thought we would lose her and then she would get a little better but not back to where she was. When she did pass away I weirdly didn’t expect it. I thought it was another bad patch that would be sorted out and I was honestly astonished when the GP said we should call the hospice. I could see in his eyes him thinking ‘why doesn’t she know?’ In the last few days she lost all her mobility couldn’t even move in bed, stopped eating completely, was very cold all the time and finally she got confused which was horrific as she had been mentally herself up to then. She died within 48 hours of going to the hospice and a week of the final deterioration so it was quick in the end when it came but on the background of this long slow decline (she hadn’t been outside in maybe a year, moved her bed downstairs in the last 6 months).

I guess I did largely try to carry on as normal although I made sure to visit her a lot until bloody Covid intervened. Then I would call and message her regularly. She always said she didn’t want people to make plans around her and she liked to hear about holidays and see pictures of the kids. In retrospect though it was like carrying around this secret pain all the time and I would cry if anyone asked me about her so people learned not to. I was with her at the end because she died in a hospice that was exempt from the Covid rules stuff and I am so glad of that. I really recommend the hospice over dying at home if that’s possible as the few days before she got in were horrible and scary between care calls.

It's awful. My DM came out of hospital on palliative care in 2021 and we were told 3 weeks. She's still here and still going strong (despite dementia now). The emotional rollercoaster (along with helping out with practical things and visiting) is utterly exhausting.

here too - my mum has kidney disease; cancer (stage 4 but currently under control) and heart failure. Shes slowly slowly fading away, has lost so much weight and so much of herself - I honestly don't know how I'll grieve when shes gone as I'm doing so much of it now inbetween spending as much time with her as possible - she's talking when she gets better but it's not going to happen so I'm bright and cheerful around her but by god it's hard

My Dad has stage 4 liver disease and has lost significant mobility. He keeps talking about when he is better and all the things he will do. It’s so hard seeing them weakened, vulnerable and powerless. I find it hard to listen to as well. I try and be positive, but it’s so hard

Dad had a fall yesterday - basically because he’s so thin and frail but in his head he can still do things. So he fell in the garage and hit his head. Mum took him to A and E and after a huge wait and not seeing any Dr they gave up and came home. He’s been ok, no dizziness or nausea.
He’s just spending a lot of the day asleep now really which I think is a sign that he’s quietly slipping away.

I spoke to an old school friend today whose dad had a series of strokes 4 years ago and he has been left very disabled and yet still here - depressed and angry and able to do very little. The strain it’s put on their mum is huge, and she is now suffering from some mental decline probably caused by the stress of it.

DH and I were saying today, by the time we get old we really hope there is easier assisted dying because this sounds better than this long drawn out death.

I agree @Ozgirl76 the pain and the emotional suffering for also the partners is also huge. These people are usually not young and are expected to do so much

Exactly @Blueskies3 - my mum is 80 as well and luckily in good health because she’s changing dressings on his legs which are leaking fluid, doing everything around the house, helping him dress etc as well as dealing with the strain of watching her husband of 58 years dying before her eyes and thinking of how she’ll cope afterwards.
She is a strong and stoic woman but this has got to be taking a toll.
Having said that, I think in a way this is easier than him suddenly dropping dead of a heart attack or something because she has had this time to mentally and practically prepare.