Cancer... on top of terminal illness

[StrugglingDaughter]

Just looking for a bit of a handhold. Name changed for obvious reasons.

DM is dying from liver disease/cirrhosis/related liver-y things. She was diagnosed and given around 6 months to live nearly five years ago. She moved in with us and I've been looking after her ever since - she's progressively gotten worse but obviously has been fighting it tooth and nail (often pretty much pretending the disease doesn't exist!) We're probably close-ish to the end, and I'm so drained. I've learnt all the terminology, memorised all the doctors names, have a routine with blood appointments etc. Its exhausting and I'm close to tears nearly every day (obviously far worse for her, but I'm here to get support for me!) but I feel I'm supporting her as best as I can.

She's had a routine scan and it's picked up on a nodule (?) which they're now sure is cancer - HCC. It's aggressive and they can't do anything about it because of various other issues she has. But it's a whole new range of things for me to learn about, and symptoms I haven't had to deal with yet, and I'm just SO TIRED. I've taken the morning off work to cry, but I really don't know how I'm going to manage the next few months. Emotionally I'm wrecked, but physically I'm also pulled in all different directions between work/single parenting/caring and now this is going to involve so many more appointments - she's been referred to a hospital over an hours drive away, and she won't go alone (she also does not manage her disease herself, would forget meds without me, doesn't eat properly unless I make her favourite foods, relies on me heavily for everything and doesn't acknowledge the help she does need - so external carers etc are not an option)

I don't have a huge IRL support network and feel I just need to get through it. Anyone else been in this situation and have words of advice? Or just any kindness at the moment 😂 Family think I'm mad to still be looking after her, friends have had close family die from similar so don't want to rant too much/be too triggering.

I am not at all experienced here but I wanted to say I hear you and feel for you. Just one thought occurred to me and maybe it is the wrong thing to say in which case I am sorry, but if your mother's cancer cannot be treated and she is already terminal with liver disease, is there really any need to take on the extra appointments and terminology? I'm sorry if that is insensitive and she is still very much determined to fight her illnesses, but sometimes, from the outside, it does seem like we over medicalise dying.

I completely agree with this.

OP, it’s not a case of not wanting to take on the extra burden of more ( useless) medical crisis management, it’s a case of CAN’T. It isn’t physically possible for you to ferry your mother to this extra hospital. You have to tell her, or the GP or the hospital that you can’t do it , not won’t, can’t. If everyone else is so committed to this course of treatment, they can arrange hospital transport.

That sounds horribly horribly difficult for you OP how old is your mum

My first thought is, is she eligible for any funded care, or able to buy any?

Yes, I know I'll probably mess up the language and sound less sympathetic than I am, but you can't "do" anything, so why load all that on yourself? You just need to know who to talk to to make her as comfortable as possible.

Caring for someone with a terminal illness is exhausting, don't make it harder than it needs to be.

You are doing an amazing job but it's time to get help in.

Realistically the HCC is probably not going to cause symptoms much different to dying of cirrhosis.

Are you being supported by Community Palliative Care? If not, get referred now.
They can also help out with getting a funded care package from Fast Track CHC.

Have you been assigned a social worker? When my DM had a terminal illness the process kicks in where hospice-appointed social worker and GP work together to suggest the appropriate care according to need and stage of illness. Our social worker was great and it was such a relief to have someone else to take on the burden of knowledge and who could make practical suggestions. DM listened to her when she hadn't listened to us, and agreed to go into a home. Just thought I'd say that, in case you hadn't got that set up yet. You might need to ask and ask again, keep on asking until you get some support.

My sister died of liver related diseases a few years ago. She didn't live nearby and staunchly denied her alcoholism so it was impossible to figure out what was going on; she had cancer by the end but had had a range of other physical and mental problems.

I think first of all, if you can't do anything else then you can't do anything else. It sounds like she's got limited time left and you've got to make the most of that time together rather than making yourself miserable. Nobody expects you to run yourself into the ground.

Things I'd look at that haven't come up previously are:

Is there any hospital transport near you that could get her to and from appointments? From previous times when this has come up on the board, it varies wildly from area to area. Your GP or local council will know.

Is residential care an option, either for now or the future? Can you get respite care or a place in a hospice?

You also need to sit down with your DM and speak to her about how you can't carry on as things are, even without the extra stress of more appointments on top.

She's got a choice here to accept more help, you've got a choice about how much you're prepared to do, your DC has their whole life ahead of them and need support. Everyone dies but also everyone has choices about how they impact on others.

It sounds like you've done really well with her over the last few years but also, it might not be in her best interests to keep her living for as long as possible. My DS died of a massive heart attack, if things had panned out differently (long story) she might have kept going for longer, but at least the endgame was relatively quick rather than involving a lengthy hospital stay. You don't get to pick or know, just running yourself into the ground might not result in the best outcome either.