End of life pathway - help to prioritise things

[SierraSapphire]

Well, here we are, i've been a poster on this board for awhile for various things, but my mum is now finally on the palliative care pathway, she's been in and out of hospital for the past couple of months (and the past 5 years!), but it's an inoperable twisted intestine that's finally got her. We're (DD and I) sad and shocked, but it's been coming for a long time, DM is 91 and she's lived in her own home right to the end without going into nursing care, which is what she wanted.

The surgeon thinks she will die this week, I have just started a new job, and I know they'll be great about telling me to take time off, but I'm also going to need time off after she dies, and I also have a new team that I managing. We will probably have a direct cremation and not organise a funeral immediately, but have a celebration of her life in a few weeks with a few close friends and family. Given that, what advice would people give me about how to balance the new job and visits to the hospital now and time off after to do the immediate admin and to look after myself? I'm already exhausted from all the caring. DM is at the moment still conscious, but sleeping a lot and quite confused. DD and I can alternate, my DB is coming up tomorrow, as well as my aunt, although it's not clear how much DB be around the rest of the week. Thanks!

@SierraSapphire so sorry to hear this. My advice (although I don't take my own advice!) LOOK AFTER YOURSELF. You always post great advice on here. Step back and breathe. Old post but ‘put your own oxygen mask on first’. Whatever works for you do it, walk, trashy tv, reading, music….just avoid the booze - we all jest about it but it doesn’t really help. I do find having a shower to sob out the worst bits helps. 🤗

Could you work in the mornings and visit late afternoon so you don't miss too much work? It's going to be a hard time.

Definitely oxygen mask on first. And then maybe see if between you, DD and DB, someone can be with mum until the end. For her, but also because looking back it’ll be reassuring to know she had people around her in her final days and hours. As a line manager I’ve had colleagues in the same situation - also with just in the new job. I’d much rather colleagues have no regrets, take the time they need afterwards, and then come back when ready. If you’re happy to, let the new team know what’s happening, I’m sure most will be very understanding

Speaking as a manager who has been through this...

Have an honest conversation with your line manager about the situation, the timeframe, what you think might happen and you'll need to do, what sadmin work you'll have to do immediately afterwards. They'll want to know so they can support you. They should be able to talk you through what compassionate leave is available (probably in conjunction with HR), things like sick leave afterwards if you're struggling or the unpaid carers' leave. Obviously a lot of it will be uncertain. Sometimes people come back to work between death and funeral, especially if there's a delay. It's really up to how the individual is feeling.

I'd hate it if someone I managed was going through this and didn't talk to me! And don't try to be heroic and rush between work and hospital/home. Or try to work from the hospital. That's where mistakes happen. It's easier from a management point of view to know that someone is off for x number of days or weeks, than to have them maybe in, maybe not and having to pick up bits of work urgently and less confusing for the team they manage.

Good luck! Take care of yourself.

If it was someone working for me, I would say that we would put them on carers leave immediately. I wouldn't want them to miss spending their last week with their parent.

I'm so sorry about your Mum.

Thanks everyone, in the end it's not been an issue, she died early this morning, much sooner than expected, she was still talking when DD called the ward at 9pm, and dead four hours later, we got there just slightly too late. Still going to a challenge juggling everything but not in the same way as it would be if we were visiting.

@SierraSapphire sorry to hear this news. Hopefully you will be able to go ahead with the plans you had to celebrate her life and you may find that the new job gives you some good focus and distraction. Let us know how everything goes

So sorry to hear this. My mum was admitted the Saturday. The Monday I rang and she was sitting up having toast. I went in the shower and had 3 missed calls. As quick as that. I manage 2 staffs work. My work was pretty amazing. I just got a sick note from the doctors for 4 weeks to start off with but then felt OK to go back to work after that. A bit of normality after the chaos helped me through and I also have really good friends at work. I organised the funeral (youngest of 5) and organised her house clearance and found it all actually helped me... kept me busy. That was 3 years ago now and it still beats me up some days. Cry it out if needed and take some time out even when you think you don't need to. I am So sorry for your loss. Xx

@SierraSapphire I'm really sorry for your loss.

This happened to me when my father died. Afterwards someone told me that if they ring and say you should come, the person has usually already died. I hope you are alright - be kind to yourself and take all the time you need. Best wishes and hugs.