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.

Big hugs @KindaDefinitelyMaybe

Is there another care home that she might be happier in? Obviously I know it's not that easy but just a thought. I can't believe that's the criteria for hospice, it doesn't quite seen right so I would agree in maybe a second opinion on that

I've tried to get hold of her social worker today to see whether we could get her moved somewhere that's midway between the residential facility and the hospice, so somewhere they can provide more medical care but she hasn't called me back and they want to discharge her tomorrow so we'll wait and see I guess.

Oh my goodness, how difficult for you.

I am out of my depth here but could you refuse to have her moved, at least until you've spoken to the SW?

@KindaDefinitelyMaybe, I may have read the thread wrong, so please forgive me if I have.
My DM died back in January and there was discussion about moving her to a nursing home as she didn't really need the level of nursing care in a hospital even though it was clear she was dying. There is a huge shortage of places available in care / nursing homes for people to be put in, in my area. At that point, DM didn't qualify as they didn't yet consider her to be 'end of life'. By the time they did, she was too unwell, so it was decided to keep her in hospital - the alternative was that there was a risk that she would die while being transported which would have been horrible.
Being in no-man's is an awful place to be for family members. If your DM has had all treatment withdrawn now, from a medical point of view there's nothing more to be done - sorry.
From a wellbeing point of view, I'd press for wherever she feels happiest. You could talk to the management at the care home to see if they would be prepared to have her back (with the view that they would say no hopefully). This will put the onus back on the hospice / social services to find her an alternative.
I would suggest that the hospice keep her there first another day or two in order to see if this is her last rally - it's quite common for people to have a good day, then deteriorate over a matter of days before they pass away. This happened to both my DF and DM. It's not always a reliable way to judge, but the hospice will know what you're getting at.
As far as informing anyone else, it sounds like DM's friend will help you, so as long as you are in contact with her, I'd refer people to her and say it's difficult for you to talk about.

Try and talk to the hospice Dr yourself. They usually are lovely and will be able to explain it all to you. Maybe she can be palliated in the care home rather than moved back and forth?

My lovely mum died of liver failure from metastatic breast cancer in a hospice a few years ago and I well remember the last weeks and how confusing and unreal the whole thing was. That waiting and feeling useless and so distressed I recognise.

My mum had been ' terminal' for years but in the end she went downhill so fast the last few weeks. I went to see her expecting just a 'blip' which we'd had many of and was shocked beyond belief when the GP called it that she was dying. We nearly left it too late for the hospice (and it was very much her wish to die there) she was only there less than 2 days before she passed but there was a horrific week at home before that where she was just getting worse every day with everything failing, not enough care and I feared we would not be able to give her the dignified end she deserved. No way was I letting her go to the DGH to die on her own (Covid rules at the time) but she was originally refused the last bed at the hospice because someone was in greater need (fair enough) and that was a terrible blow and a crazy rollercoaster of emotions for us all. Fortunately a bed came up 2 days later and it worked out in the end.

Although it was really traumatic and intense it was also one of the most powerful and precious experiences of my life to have been there with her at the end of her life and I would not change anything. She was a great mum and we were really close and it was a privilege to be able to give back a bit to her in her hour of need.

For myself I was weirdly obsessed with getting massages around that time. Also having long baths and going for walks. I found it so helpful to physically release all the tension I was holding in my body.

She was very driven once she knew she was dying and in the lucid periods she was obsessively writing down things that felt important to her (often a few times over) bank details and lists of people to contact etc. Maybe you will be able to use this reprieve to make sure all is how she wants it to be.

The only criteria I have ever heard for hospice is that the person is in their last 2 weeks of life but that is notoriously difficult to know so they must sometimes get it wrong. I guess they don't want someone to be there for months if they have lots of people waiting for the bed but going back and forth does seem horrible. I have a suspicion they might prioritise people who are not already in a 24h care facility but perhaps I am wrong on that.

This is similar to my Nan. We were told she only had a short while to live by a top London hospital (heart valve failure). We all said goodbye, extremely upsetting. She's still here 4 YEARS later!! Of course we're happy to have her (although she's in a home with dementia now), but talk about an emotional rollercoaster.

Thanks for all the messages, I'm up here with her now and although she's awake and chatting, she has no idea who I am (thinks my name is Erica!) Just to stress, I have no issue with the hospice discharging her as they obviously have a lot of people using the service. My concern was that she's not happy in this particular home. I've asked her if she likes it here and wants to stay here and she said yes, so that's all I can go on for now.

@KindaDefinitelyMaybe how're you doing? How is everything looking now?

Very much like you Robin. She's still here. She's fortunately not in any pain and after having a brief rally when she went in and then left the hospice, she is declining again. There are currently two versions of her - one who is lucid and knows who I am but who cannot stay awake long enough to have a conversation, and another who is more chatty but has no idea who I am. Both scenarios are equally as hard. It's also hard having phone calls from her friends (one in particular...) who keep telling me the home are mistreating her, not feeding her, that's why she's getting worse, I should get her moved etc... This is incredibly traumatic when I am 300 miles away. And I keep wanting to point out to them "she's not getting worse, she is bloody dying!!!". I don't know whether they expect a miraculous recovery but we all have to be very pragmatic about what the next few weeks hold. But all in all, I am just about keepin my head above water and an insanely busy work period is actually helping me.

Oh it's a nightmare. People go to a hospice because there are symptoms that can't be managed in incurable disease, not because they're about to die.

Then they get to a hospice with spe insist nurses and better pain relief, and it isn't uncommon for people to pick up a bit.

I would officially wash your hands of her care (not in reality...) and tell everybody you are going home because work are insisting on it. Let them get on with it for a while. Then DON'T go back to work unless you feel it would help you. Have a rest.

Once they have got her back to the nursing home with community palliative care contact numbers and an advanced care plan, then you can decide how much you want to be involved?

Oh the BLOODY friends. Cut them off n the phone because someone's at the door. Tell them to phone the hospice.

She's not dying because she's not eating: she's not eating because she's dying. 💐

Committing that to memory for the future - thank you!!!!

A quick update. I arrived in Spain this afternoon for a work conference as she has been quite stable these last few weeks. But of course, as soon as I landed I get a call from the home. They're moving her back to the hospice tomorrow as district nurse and GP have visited and all agree it's not going to be long. She's even started to 'smell' different which is a thing apparently! They obviously can't give me a definitive timeline but it could be anything from 24 hours to two weeks. And I'm in Spain. Great. So my current plan is to speak with the hospice tomorrow morning and see whether they can give me an update, and potentially fly home tomorrow night or Wednesday morning. I just feel so stuck and lost and hopeless.

Bless you, @KindaDefinitelyMaybe. You can only do what you can do. Have a plan in mind so that if you're told she's entered the last phase you can go home.
But, she may well go before you can get there - and that might be what she wants.
Be kind to yourself.

Let us know what you decide to do @KindaDefinitelyMaybe and please don't be hard on yourself for going away. I agree it's likely that she's started to 'let go' because you're not there.

Take care x

@KindaDefinitelyMaybe
You can't put your life on hold, she wouldn't want that. My nans done the smelling different a few times now. It's a really strange sweet smell but can also be a bit like acetone. It is definitley a thing. However it can mean something and nothing.
How's she doing today?
Thinking of you

I managed to get an earlier flight and arrived at mums house at 2am. Got a few hours sleep then the hospice called to say her breathing had changed and they feel we're in the final stages. I'm up with her now holding her hand. Hopefully she knows I'm here.

My lovely Mum passed away, very peacefully, about an hour ago with me holding her hand xx

Oh Kinda. I'm glad you got there and that it was peaceful.

How are you feeling? I remember a kind of blankness after mum died; so much rushing around to do beforehand, and rearranging things, and trying to talk to staff, and then... it all stopped. Do you have a bereavement team who can talk to you and give you a cup of tea?

Massive hugs and love @KindaDefinitelyMaybe I'm glad she's at peace now 💐

So sorry for your loss op, glad you managed to get to her in time to be with her x

So sorry for your loss, and also glad you got to be with her at the end.
don’t let other people put their expectations on you now - do whatever it is that feels right for you in the moment x

Sorry for your loss 💐

My mum also died in her 60's of ovarian cancer, it's shit.

When you've dealt with the practicalities, I would strongly advise having bereavement counselling. Sending you hugs x