To ask for advice for palliative care for an elderly lady

[CoffeePhoenix]

My MIL is sadly being sent home from hospital with the expectation that she will die in the coming weeks.

May I ask for any tips you may have or things that you wish you had known? Her return is happening very swiftly and I'm feeling unprepared.

We have a carers package for personal care in place already, and we've been told that a referral to the palliative care in the community team will happen when the district nurses think it is appropriate.

The GP consultation is less vital now than it was as Covid rules have changed the need for this - there are numerous ways round it that didn't exist before.

I'm really sad today. MIL didn't have a good night, and it's clear we either need a palliative care nurse for overnight or we need to rota us to stay with her. Mindful of your advice, I would choose the palliative Care nurses but I think some want to try sitting with her, which is their choice - it's their mum - but harder to organise and I'm tired, soul tired. I think a few shifts might change their mind though. I have more experience of what it's like and I don't think they're expecting the shouting out and moaning all night, and how that can scour your soul at 3am when you can't help her be comfortable, it's just how she sleeps, with lots of groaning.

This is very prosaic and not lovely, but make sure you've got a commode, lots of latex gloves and crucially lots and lots of adult sized wet wipes - they make bum wiping a lot easier, and keeping the person clean is a big part of their dignity & comfort.

I also would suggest getting some nice pyjamas / bedwear for them, change it as regularly as is possible without making them uncomfortable.

Be really, really needy with the authority overseeing things. Get a driver installed for pain medication if you possibly can.

Just RTFT and realised you're further along than my advice was helpful for. A few other thoughts

• cold fizzy water is refreshing even if they only take a few sips.
• you're doing an amazing thing making sure that she doesn't have to die in hospital. Please, please give yourself some credit.
• we did the same thing, and while it was a hideous time, it was the best last gift we could give and it made the grieving process a little bit easier.
• Pour yourself a big glass of wine whenever you need to.
• as PP said, fuck the covid rules, this is an exception.

@CoffeePhoenix

I'm so sorry. Keep reaching out here for support too if it helps.
As pp have said, sod covid rules too ATM, cuddles, hand holding, hair stroking, talking all good ways of offering comfort if they're tolerated.

crucially lots and lots of adult sized wet wipes - they make bum wiping a lot easier, and keeping the person clean is a big part of their dignity & comfort.

You can get large 'patient wipes' that are dry, but very soft and a spray for this (chemist or look online) I tend to spray it onto the wipe and hold it in my hand to warm it as a cold wipe or spray can be uncomfortable in a delicate area.

Even if you have someone in to sit with her overnight, if you or another family member wanted to they could also be there, and you all may find it easier if someone else is there too that's experienced for reassurance for all of you.

Thinking of you.

I am so sorry you are going through this, but you are doing the right thing.
Practical things

• You are automatically entitled to attendance allowance www.gov.uk/terminal-illness-benefits
• Have key phone numbers readily accessible/ saved in your phone contacts
• Identify a funeral director so you can contact them easily
• Manage phone calls from lovely people by sending regular email updates. So many people don’t understand that their one kind phone call is actually replicated and this adds additional stress and pressure on the carers. Encourage email contact instead as it is easier to manage.
• look after yourself, it’s important you eat, sleep and get out for a walk each day.
• help them to get their affairs in order - this can give them peace.
• check if FIL has a joint account/access to money - this really helped as my parent has not had to worry about accessing money whilst probate is sorted.

You say other family members think they will get better, this is so hard for the person dying as they need to have conversations where they can talk about their death and future without them. It’s also hard for you. Can you gently suggest they think about your MILs need to face the inevitable rather than their loss when in her presence.

Acceptance of death is important for everyone. I recently lost a parent who had palliative care at home. It really helped them, and us, that we all accepted they were dying and could have honest conversations about DNR, not going into hospital, the funeral etc.

Your MIL is lucky to have you.

Marie Curie night nurses were an absolute God send for us during my Dad's last nights. I think we had a referral from a Macmillan nurse but I can't recall exactly.

They were truly wonderful and brought calm to the house as they clearly knew what they were doing and allowed us all to try and get some sleep.

Also, whilst everyone is different, they were able to say initially that they felt he had a couple of days left, then that he had worsened through the night and ultimately when he was in his last few hours. Sorry to be so black and white about it (crying as I type) but it removed some of the panic we had each time his breathing changed and I think his passing was much calmer for us all as a result. I can't speak highly enough of them.

As pp said ask your community palliative care team or District Nurse for Marie Curie Nurse/HCA to sit with her overnight. They're v experienced.

Sorry to hear she's already worsened, @CoffeePhoenix We can hear how agonising it's for you.
Sorry too, if my earlier suggestion about a commode was inappropriate. (My mum had a broken pelvis for five months but could be lifted to the toilet by my dad; aunt likewise didn't want a catheter but also didn't want to 'wet the bed', despite the pads for that purpose. It was difficult trying to meet their needs and wishes at the same time.)

I would definitely back up what the others have said: have palliative nurses/sitters in place alongside any family member who wants to be there. They may think they can cope now, but the reality may well be different and even traumatising if they find themselves out of their depth in the middle of the night. They might think they'll just be there to hold her hand or prop a pillow, but need to clean and change or medicate her - inexperience might make this undignified for MIL. As others have said, the sounds, groaning or rattling breathing - not everyone will be prepared or understand what's normal/natural and it causes panic. It's noble for people to want to be at her bedside, but possibly naïve if they think they can provide enough care to keep her comfortable. Her needs come first and they'll be glad the professional help was there.
We're all thinking of you. Keep going - you're already doing her proud. Xx

Thank you for your advice everyone. It has been really helpful - I knew what to do several times yesterday because of it

I think today might be her last day. It was hard yesterday, not being able to get round - one of my DC is disabled and we have no one to babysit. (We might end up popping them in the car and leaving them outside the house but I'm not sure they will cooperate on too many occasions). I did realise how much I've used 'being useful' as something to hide my feelings behind, and without being able to do that as much, I spent the afternoon cleaning the house while crying

She wasn't lucid much, but she did ask where I was yesterday

My friend is going through this right now. It is draining and involves lots of people coming and going but they are there to help. Don't try to take on everything, use the help. He has turned down a lot of help (because of covid) and is already starting to struggle. He has had some lovely moments and is lucky that he has been able to put aside worries about home and work. But that does mean less distractions from the situation.

Ideally a few family members and as much professional care and support as can be got. Trying to minimise pressure from other areas of life. I'm sorry you're going through this but with support there can be some moments to help what comes after less jarring

Thinking of you @CoffeePhoenix

Thank you @Maverickess - I think the end is near. Her breathing is becoming noisier, and those who are sitting with her tonight sound worried. The district nurses have been lovely...

@CoffeePhoenix I'm sure that being at home, surrounded by such love, is easing her on her way.
Wishing her peace and continued strength to you.