Well, anticipatory grief sucks the big one, doesn’t it?

[HEC2746]

My mum is dying. But we have no idea how long it’s going to take. The cancer is terminal and advanced, but it hasn’t knowingly spread anywhere else and she’s currently not exactly physically suffering from it, so maybe it could be a while. On the other hand, she’s had two serious heart attacks and a small TIA due to blood clots (possibly caused by chemo), is type 2 diabetic, she’s barely eating, and her liver seems pretty fucked, so maybe something there will be the end pretty soon. Who knows.

I can’t stand this not knowing. Will I wake up tomorrow and she’s had a heart attack? Or maybe we’ll get to spend the next 9 months watching her waste away and go through end of life care for one of the really shit cancers?

None of the things people say we should be doing with her now fit her personality. She’s not a miserable person but she’s never been one for wanting to “make memories”, let alone now. She’s doesn’t want to have one last experience of something, she doesn’t want to reminisce and tell us her life stories. She doesn’t have any. There’s nothing big to share and air and talk about. She just sits in her chair, watches TV, and quietly waits to die.

I’m sucked of joy, battling through the days around uninspiring work, and two kids, and a house, and perimenopause, and all the mundanity of life. I’ve done the reading and I know what this is, I can hold and sit with my feelings and let them wash around me. I’m accessing counselling. I have friends who let me rant, who listen when I tell them about my sadness or my anger, I have sympathetic colleagues, I have a husband who is trying his best, it’s all there. I even have moments where I can make proactive plans to support my Dad when Mum dies. I don’t lack or need any support, I’m lucky.

Still. It’s fucking awful though. I just want someone to tell me how long this might last. Maybe I want to know how long before I get to grieve. Maybe I just want someone else to sit here and say they’re in the middle of things and they get how truly shit it is. Maybe I just want to give in to the desire to bellow to a room full of colleagues that none of this matters to me when my Mum is dying. Maybe I just need the big, big cry that just won’t come. Who knows.

I'm so sorry. It'll come. Espiecially if you're by yourself at any point. I have nothing to say that is helpful apart from I've been there and it is terrible and awful and so unfair. Xx

I can confirm, it does indeed suck, massively. It's like taking a big breath in and then not breathing out again for weeks/months, just holding it. I'm really sorry you're going through this. It's awful awful awful but you will breath out again, eventually. If you can manage to have a massive cry I think it might help, I know it did me in similar circumstances.

It's truly awful this bit. It's stressful , and heartbreaking, and boring, and confusing all at once. There isn't anything that you 'should' be doing. I just kept telling myself that I would look back on this period and be so proud of myself for getting through it, and yep, that's how I feel now.

Been there. It's awful. What I found strange was after she went people expected me to be grieving and upset but I was already moved onto the next stage. There was a loss of course but the real tough part was before and i felt others didn't really get that. I also don't really remember the anniversary date. It's like the total opposite from a sudden death situation where your life before ends on that one day. For me the days blurred, she was in a coma for a few days so it wouldn't really have mattered which day she slipped away.

I’m there now, in a limbo of six years of anticipatory grief. It came close this week I began to break down with (relief, shame, anger, frustration) the grief and no she isn’t there yet.

I just wish I knew when instead of coming down every morning opening the door and checking if she is breathing today.

My heart goes out to you it’s beyond hell on earth. With one parent snatched away just as he began to feel his age and this drawn out purgatory, I know what I’d chose my ending to be and what I want my son to go through.

I’m probably about your age and I am the one with the terminal illness. I worry about the grieving my DDs and DH are going to do, and that of my very elderly parents. It’s absolutely shit.

Yes it is quite shit. Mostly I feel guilty. I don’t know whether I should be going to see him every day (2-3 hour round trip) just in case this is one of the last good weeks, or if it’s OK to actually just spend a few days with my family because it could be months and months yet. And I even feel guilty just expressing that thought.

The unknown is the worst part, which makes me think it should be talked about more, and then maybe we would know more.

I’m so sorry @LastHotel I can’t even imagine what it is like being in that position.

What you’re going through sounds absolutely hellish, OP. My mother died very suddenly and unexpectedly. I used to wonder which would be ‘better.’ Time to say goodbye to the loved one, or a very sudden passing and I think I know now. My heart goes out to you.

This is where I am at too. My dad had a terminal brain cancer diagnosis in October. It was out of the blue - in his late 60s and full of health. He still is. Nothing has really changed. Except everything has. He will die probably in the next year. The anticipatory grief is awful. What I can say is that probably the first 3 months were the worst. Maybe it's the nicer weather lifting my mood. Or my mind is finally coming to terms with it. But I no longer wake up wondering if today will be "the" phone call.
What hasn't subsided is the vivid dreams (and they are generally no longer about my dad, but shit dreams nonetheless). I'm exhausted from these dreams that make me feel like I've never slept. I have tried all kinds to alleviate them to no avail.
But yes, my full sympathies for this is really, really fucking shit. Life is in total limbo. You know what's coming. But no idea when. Or how bad it will be.

I am so sorry OP it is a horrible situation. I have been there too, only the end for my Mum came very suddenly. Of course, we had seen it coming after 10 years of cancer. I saw the decline and knew, I grieved and used the time 3 weeks before she died when she was still active but becoming much frailer to write her eulogy, because I wanted to be able to write it from my heart and not from a place of grief. Because of the time I had, I was able to support my Dad, my husband and my children all who loved her dearly better than I would have done in the throes of grief. I cried later of course, but not until a couple of months later and over silly things. Take care and be kind to yourself OP

OP my heart goes out to you. My gorgeous Mam passed away just over a week ago. She had stage 4 cancer but it all unravelled really fast in the end. She was admitted to hospital just for some tests for 1 night, but by day 4, she had declined so quickly that she was unable to hold a conversation or use her phone. She died less than 4 weeks later.

That period of 4 weeks was hell. Seeing her decline every day, sleeping more and more, she ended up with a catheter and feeding tube. She couldn't walk as the cancer was in her spine. It was absolutely awful and she had zero quality of life - this was such a shocking situation given she was an active and well 68 year old just a couple of months before.

There's no advice I can give other than please try be kind to yourself. It's exhausting. Set some boundaries and give yourself space and time to do the thins you enjoy as well as visiting obligations etc. I did a lot of grieving during that time, which I think has helped me during the past week, but it's early days.

Big hugs x

My Dad died from liver cancer 3 years ago, diagnosis in the September (he'd been unwell though for some months previous) and suddenly we were thrown into this "we can't specify a time line but it will be under 12 months". He was in a hospice by December but held on to the end of January. It makes my heart pound just remembering how horrific that time was.... and I had some family support sessions with a counsellor who told me all about anticipatory grief. And honestly in some ways, it was worth than the actual grief when that came along. It oddly floored me once he'd gone mind.

I am in a similar position with my mum. It's as though I constantly feel I should be treating each day as if it were her last day, but life - the need to work and keep the show on the road - means I can't do that for, potentially, months. I have thought this through hugely, getting 'the phone call' - even down to working out the % probability of where I will be when it happens - and I do all this planning and then feel a sense of anticlimax, and somehow the states of dreading her death and wishing it could be over with manage to exist simultaneously, and at the same time I am dealing with all the mundanity and trivia of daily life.

Thank you, everyone - it’s so reassuring to hear from people who are there or have been through it before.

I want it to be over and I don’t want it to happen, which feels such a weird state to be in. Wanting both at the same time. I dread both the call that she’s had a heart attack, and watching her die slowly in a hospice. I want to be hugely selfish because I’m going through this and it’s so hideous, but equally I know we all go through this at some point and it’s nothing ‘special’ and it’s just something we need to get through.

Thank you all for talking to me when I felt so mopey earlier. I need to find something that will make me have a huge cry soon.

@LastHotel so much love to you right now x

If I had one piece of advice for my younger self (I was in 20s when Mum died) it's to accept whatever you are feeling and not analyse too much, dont allow guilt in. It's ok to wish things would speed up, or to wish it would slow down. It's ok to be pissed off your own life is put on hold. It's ok to be sorry for yourself, it doesn't take away feeling sorry for the ill person. It's ok to admit it's boring just sitting around or making small talk and it's ok to really really not want to visit sometimes because you are exhausted, or maybe you just want to avoid the negativity of it all for a while.

@Dontlletmedownbruce Thank you for this. It's one thing I constantly wish, that I could talk to my future self and ask her, what should I have done, what shouldn't I have done, what do I regret.

This is the hardest bit OP. Hand hold. For me, I found relief when my dad died and found peace and acceptance because we had done so much grieving in the six months before he went. I know that’s not the case for everyone but I think this is part of the process.

Thank you all so much for this thread. My mum has been recently diagnosed with a terminal illness and have been feeling guilty about lots of these things. Grieving before she has gone. Not treating every day like it could be her last. Sometimes wishing the limbo is over. It helps so much to hear other people wrestling with the same feelings. Sending peaceful thoughts to you all.

I've been through this with my mum, she had a fall one morning and the next day I was told her kidneys were failing and she only had a few weeks to live. She lived a bit longer than that but every time the phone rang my heart would thud and carry on thudding for hours.
I had the strangest sensation of my head floating somewhere above me as I tried to just get on with things.

You can always talk here if you want to. I’m sorry you’re going through it too.

I also worry I’m not treating every day like her last. I call nearly every day but sometimes it is so dull. She’s checking out mentally, she’s all there but she only wants to talk about medical appointments she has been to, there’s little interest in what everyone else is up to. I’m angry and sad about that too because I miss the mum o gossiped with and who wanted to know everything about her grandkids lives. Then I feel awful for thinking that.

I am going through this too. My dad has mesothelioma and was diagnosed 18 months ago. He had immunotherapy which gave him a full year of good health (went on holidays etc) but since February his health has significantly deteriorated. He is now extremely breathless and has the most awful cough.

He is 80 though and he himself says he has had a long and wonderful life, a happy marriage and has no regrets and nothing more he wants to do.

It’s hard though, not knowing whether he’s got a month or 6 months. Added to this fact is that I live in Australia and have two high school boys so I can’t be here all the time (I’m here now) and each time I leave I wonder if it will be the final goodbye.

This trip though, we have tied up loads of loose ends, and it feels like he’s ticking off a “things to do before I die” list in a very practical manner.