I don't know what I need?

[KindaDefinitelyMaybe]

This is so rambling but I hope it makes sense and I hope it resonates with someone else out there. DM is end of life. She's in kidney failure. She's in a home but supposed to be moved to a hospice today. She's just fallen out of bed and now going back to hospital despite asking for no further hospital admissions. She's 68. Stage four ovarian cancer which has spread everywhere (top tip: the perineum and peritoneum are two very different areas on the body! Learned this when asking the Dr something last week). I live 300 miles away but am up here now as I was told it was a matter of days. That was a week ago. I'm still trying to work. I miss my kids. My DB is being absolutely useless. I am laid in my old childhood single bed because there's nowhere else to 'be' in her house (sofa was removed to get a bed in the living room). And it's too much. It's just all too much and I can't cope. But if I tell people I'm not coping, I'll get hollow words of sympathy and messages of 'hugs' and 'you're in my thoughts' and I can't handle them. All her friends have been to see her to say goodbye, it's all been very sad and emotional but.....she's still here! And now I'm getting daily messages asking how she is, any changes, any updates. I feel like a one women repository that people keep taking from. And in the middle of all this is my Mum. Mostly asleep, mostly pain free, hanging on for dear life as her body fails around her. And I need something, but I have no idea what.

[olderbutwiser]

This is totally shit for you, and you are allowed to be angry, full of grief, resentful, exhausted, everything.

Do you have anything practical to be getting on with? Would some angry exercise help?

[CaptainBarnaclesandthevegemals]

A walk in pleasant surroundings? Beach? Hill? Forest? Park? Pick somewhere not too far away and with phone reception so you won’t be worried about missing any calls from the home/hospital. Would it help to give yourself the morning off replies to friends and family asking for updates. Then write one and send it to everyone who should be in the loop. This will take less brain space than replying to everyone as messages come in.

[cheezncrackers]

If she's in hospital OP I would take the opportunity to do something for yourself. Go for a walk or a run or go and have a coffee in a nice cafe or go for a wander round the shops - something - anything that might make you feel a bit less miserable. I get it - waiting for someone to die is fucking horrible and no amount of 'hugs' or 'thinking of yous' is going to cut it. You're in limbo, sad, unsupported and want to be at home. So do something for yourself, even if it's just to breathe fresh air and move your body

[Oxonc3]

Not rambling, makes total
sense. Have the hospice/hospital confirmed death is imminent? There are particular ‘steps’ the body goes through. Have you told your DM it is ok to go? I have read that often they feel they need permission.
set up a whats app for the people that keep asking questions so theres only 1 lot of messages. Or you tell DB and delegate all
comms to him. Speak to your GP about being signed off if you are mentally fragile or does your work have any family leave you can take? Is there a will? Are valuables secure? What you probably need most is a hug and a cry. That’s ok. The hospice team should be able
to support you as well as DM. Or Macmillan. But a bath and cry might be an immediate help? I hope you find what you need

[TriplePoint]

Can you tell your brother to be there and sit with her for '2 hours, so she's not alone while I get some fresh air and do admin'? Sometimes clueless people respond ok to a direct instruction.

[LaviniasBigBloomers]

This is completely, completely shite for you. However, my dear one, I am going to be a little bit robust: no-one else is stepping up to take care of you and your DM at the moment so you have to step up and take care of yourself.

First, get up, have a tea, go for a walk, eat some food. Something really nice, whatever you fancy. DM is in hospital right now, so she is safe and cared-for.

While you're having breakfast, make a note of anything you want DB to actually do. Yes, he shouldn't have to be told, but he's being useless so tell him. Even if it's to come in and do a three-hour sit with DM every evening while you nip back to shower and eat. You need the break, he clearly needs the structure.

When you go into the hospital today, ask to speak to the palliative consultant. They should give you a clear idea of what's happening/what might happen next. Obviously the goal is to get DM into the hospice asap and the hospital will be working towards that. Once she's in the hospice, a little of the pressure will lift as it's such a different environment, where they are also a little bit more geared towards looking after the family as well as the patient.

Please stay hydrated and keep eating. The process isn't pleasant and I have first-hand experience of this specific cancer, but once she's in the hospice - they are so kind and experienced and they will hold your hand through it.

[LaviniasBigBloomers]

And completely agree with @Oxonc3 - get your DB to run comms, mute everything else and ignore messages. I appreciate you can't turn your phone off rn but when you are actually with DM, turn it off.

[Isometimeswonder]

You are a lovely daughter to her.
And as a word of warning, please be aware you will need time after she passes to look after yourself and to grieve. Do NOT forget this, it is important x

[StrictlyComeback]

I think the WhatsApp group is a good idea. Set it up and sent an honest message saying whilst you understand people are trying to be supportive you are finding receiving messages from lots of people asking after her too much. Say you will update the group once each day and ask people to wait for that.
Then as others have said, assuming she is cared for try to do something for yourself each day. A walk perhaps, or coffee and cake in a local cafe.

[Winky1973]

I can completely sympathise. I have been there.

All I can say is take each hour as it comes. It’s overwhelming and just feels too much to cope with. No one else around you appreciates how you feel. It’s utterly draining.

I echo keeping hydrated and nourished and also try to walk outside for even ten minutes a day.

Update everyone no more than once a day or refer them to your brother going forward. You cannot do everything.

End of life is harrowing. There is no finite time or date, you just have to accept that. The best you can hope for is your lovely mum remains pain free and she will quietly slip away.

I could have written your post six years ago. It really resonated with me. You will get through this I promise you. For now though, you will be beyond fatigued and mentally drained and it’s ok to feel that way.

I’m thinking of you xx

[Kendodd]

The what's app group is a good idea. Does your mum have a will? It may be to late to get practical things like that in order but if its not, do that. It makes things much easier afterwards. Agree with others, list of jobs for your brother.
Also, don't feel you have to be with your mum all the time or even at the moment of death. We have this idea that everyone wants to die with family around them. Not true. For plenty of people that's the last thing we'd want. Even if that is what you and your mum would want, sometimes it just doesn't happen like that.
Take care of yourself.

[KindaDefinitelyMaybe]

I just wanted to thank you all for your help and advice earlier, some of which I've actioned! I've set up a WhatsApp group and those not on WhatsApp will be informed by Mums best friend. DB still being useless and refusing to engage but three of her friends have stepped in to help and are doing a few shifts this afternoon/tonight/tomorrow morning. This means I've been able to drive home to see DDs gymnastics presentation which meant a lot for both of us. I'm heading back up tomorrow morning but it means I've had a nice home cooked meal, a bath and chilled on the sofa with DH and bake off. Mum was discharged from hospital after being checked over and is now in the hospice so my mind is a bit more at rest now. Shit times still lie ahead but I'll deal with those as they come. For now, I'm going to have a good nights sleep in my own bed 😴

[LaviniasBigBloomers]

Aw that's a good result for today @KindaDefinitelyMaybe

I think you'll see a massive difference in your mum's care in the hospice, they tend to be better at supporting family too. Take care of yourself x

[KindaDefinitelyMaybe]

Oh god this is exhausting. I don't know if this is the pre-end surge or she's rallying but she's just asked for tomato soup and ice cream for pudding. Now she's not sitting up in bed chatting away but she does seem better, brighter and more with it. And I bloody called everyone to say goodbye because she only had a couple of days left. I feel like the boy who cried wolf 🙈🙈

[KindaDefinitelyMaybe]

And everyone is being so kind and so sympathetic and work are bending over backwards to support me. And I know that death doesn't work in a linear fashion but I feel like I'm taking the piss, like I'm exhausting all their good will.

[StrictlyComeback]

If she’s a bit brighter make the most of that, everybody understands that these things are not always logical, no one will blame you.

[slithytoveisascientist]

I believe that a sort of last minute rallying can happen in the days before death. I'm not sure why. I'm sorry as it can be very cruel and gives false hope - it probably doesn't mean you've misled anyone though.

[Pigeonqueen]

I’m sorry you’re going through this. I went through it in almost identical circumstances with my own mum in 2019. They said she had 4 weeks and she went for 3 months. It was really difficult. We had a difficult relationship anyway though and it made the whole thing very tricky - I also had a disabled child to care for in the middle of it all.

As someone has said just before me that sudden thing where they appear brighter, rallying etc often occurs very shortly before they pass. Just be prepared.

You will get through this, even if you don’t think you can do it. You will.

[Hotfeetcoldfeet]

Your mum is very lucky to have you and sounds like you have some good strategies in place. It’s okay to just focus on your mum, you and your daughter and immediate loved ones at the moment. Don’t feel pressure to keep up with everyone. You are doing an amazing job

[FiftyNotNifty]

Have recently been through this with my dad, full sympathies. To echo what other people have said, he did perk up towards the end, and it was nice to get a bit of a brief chat.

[LaviniasBigBloomers]

There often is a surge. Please try not to worry what other people think, including your work. Those that know understand that it isn't a linear process. Those who don't are lucky, but their opinions aren't valid.

[WhenRobinsAreNear]

How are you doing @KindaDefinitelyMaybe ive been thinking of you.
It does sound like it could have been a surge but then I thought that a week ago with my nan and she is still here.
This is exhausting and draining and half the time I don't know where anyone gets the strength to get through this.
Try not to worry about what other people think. You only get one shot at this and you're doing amazing, do not forget to take some time for yourself. Today I went shopping for a few hours and for the first time in weeks I felt relaxed. It's so hard to juggle it all and it all feels like a massive marathon and not a sprint.

[KindaDefinitelyMaybe]

Morning all - I have an update but I am honestly speechless. The home she's just moved from phoned me yesterday to say the hospice are planning on discharging her because she doesn't fit the criteria for end of life care. Since she arrived, she has been able to take oral medication, has fed herself (albeit three mouthfuls of ice cream) and is taking on liquid. Their doctor assessed her and said she needs to go back to the home. I'm devastated. Two weeks ago she was in kidney failure and had days left. Now they're saying they don't believe death is imminent. I'm so confused! I'm trying to get in touch with her social worker because I want her to be properly reassessed so we know what's going on. I'm back at home now but heading back up tomorrow. I'm not sure my emotions can take much more of this.

[StrictlyComeback]

I really don’t understand how the need for hospice care is assessed. We were told two weeks before our dm passed that she wasn’t ill enough for hospice. She wasn’t eating or drinking anything and needed help to get on and off the toilet. By the time she was ill enough she was taken straight to a general hospital ward who knew nothing about end of life care. How does anyone get into a hospice?

[KindaDefinitelyMaybe]

@StrictlyComeback - she originally went into this hospice back in April as she was post radiation infection and had been in hospital for a month. This was ostensibly for rehabilitation but she never got back on her feet. So the staff there know her. Two weeks ago she was assessed by her GP and he confirmed she was EoL and asked whether she wanted to go to the hospice now. She wouldn't decide until I got there the next day. I came, she decided she wanted to go, the district nurse came out and agreed she was a candidate. She wasn't eating or drinking but could still swallow. Now my concern is that she was really unhappy in the home which is why she stopped eating - I originally thought it was so she could have control over when she died, but then she perked up in the hospice! So what will probably happen now is she'll go back to the home and stop eating again! AAAAAAGGGGGGGHHHHHHHH.