AIBU to ask what practical support Mum/Family needs in palliative care?

[OneNeatDenimHelper]

Posting here for traffic but please move if I am in fact unreasonable to ask here.

My Mum is receiving palliative care for stage 4 lung cancer due to a pleural effusion.

We are nearing the end now I fear. There are other complications. She’s having a chest drain to make her more comfortable.

Please tell me what to do. I have got a wheelchair for her, applied for a blue badge, she is receiving PIP, and she has 2 pensions hopefully on the way for ill health retirement.

There are talks of a bucket list and jokes about funeral planning. I don’t know whether to broach this seriously.

Her and my Step Dad live together, so if/when she does leave hospital, she won’t be alone. I have suggested speaking to Macmillan about getting a hospital bed for the spare room.

She should be seeing the hospital Palliative care team for symptom management and making sure she has the practical help when she gets home- they may well not use the Macmillan name anymore so make sure you ask for the Palliative Care Team.

They will also make sure she is referred to the Community Palliative Care Team on discharge.

Have you asked them what would be helpful or appreciated rather than guessing? Some people would love an appointment with a mobile hairdresser, others a family gathering or something.

In terms of funeral planning etc again, just ask at an appropriate time. When MIL was fading I asked if she wanted us to know anything that she wanted ( she was very particular!). Next day she had SIL in and dictated her own eulogy and gave very specific instructions.

I hope the move goes smoothly and the last phase is peaceful.

Thank you for this, I have added it to my list

At the minute I’ve focused on what would be helpful whilst she’s in hospital. I.e. making sure she’s not inundated with visitors, so I’ve kept a schedule going, kept it to family only, brought in all her bits she needs (with the help of my siblings).

I spoke to my Step Dad last night about doing a little party at my house for her birthday at the end of the month, if she’s up to it. Before she went into hospital, we also talked about doing a little day trip out now that we have a wheelchair for her.

Her nails are growing out, so I will ask her if she would like a mobile manicure when she’s home.

Thank you for responding

You should be allocated an occupational therapist who will help with home adaptations, (grab rails, bath chairs etc). My advice is to say yes to everything immediately. My aunt kept saying she didn't need it but by the time she admitted she did, it was almost redundant as she couldn't manage the stairs anyway.

Try not to over-plan, take one day at a time.

Use McMillan/Marie Curie as much as you can. Investigate benefits (if financial support would help).

Maybe most important, look after yourself. You will get a wealth of help for your mum, but not for you. Take care of yourself, I hope you're doing OK.

We've just been through all of this with my mum . I would slow down and go with what she would like. Make sure the palliative care team are in place and have the anticipatory meds ready (they didn't for my father and it was very upsetting).
Its a tough time, love to you all xx

Thank you for this. I agree re saying yes straight away, she put off the blue badge application for 3 months saying she didn’t need it, and now she really does, it takes 10 weeks to process her application.

I rang Macmillan this morning and registered with them, and they’ve sent me a booklet (167 pages!) that I’ve slowly been reading through.

I’m having counselling arranged through my work which has been really useful.

Thank you for your message. What do you mean anticipatory meds - morphine administered at home?

Sorry to hear that you’ve experienced this - and everyone else that has responded so far. It’s a strange and sad time.

Anticipatory meds are for the very end , normally morphine, something to keep them calm, anti sickness and something to help with secretions, they're normally set up with a driver intravenously x

Thank you for this, I’ve added it to my list of questions for when she’s allowed to go home

Right now, pause, drink water, go outside, and breathe.

All the actions, all the lists, all the to dos - they will all happen in the fullness of time, there are a whole team of professionals who really are experts at this and you've done the very hard bit of you and your family acknowledging the end is happening.

My honest advice, is to check in with yourself as your very first instinct when the urge for action kicks in. This process can take a while and it absolutely does impact your whole body and your responses with adrenaline spikes mixed with dread - you are very important.

Keeping open communication with your mum and stepdad with their wishes - the gathering sounds like a really lovely idea of they're up for it.

Finding out if she does have any strong wishes or preferences about care would be good to voice now, there is a respect form (it's purple) is a really good one to have sight of, a palliative nurse is hopefully available to go through it with your mum.

If you have a local hospice, they can be a brilliant source of support too.

Be gentle with yourself, it's very easy to get swept up on the doing and avoid the emotional hits - but sometimes are brain will only allow in what you can cope with at the time.

If you've got time to read, one book I wish had been around when my mum was in her final days is Death of an Ordinary Man by Sarah Perry, which is a very sensitively written account of her father-in-law's last week or two. It's short and very honest about the emotional rollercoaster of helping someone be comfortable at the end, as well as the practical stages of what happens when a life is coming to its natural close. My main anxiety was just not knowing what to do best to help DM, but as previous posters have said, do let yourself be led by the palliative care team. In my experience, DM's already good nursing care kicked up a whole other notch as soon as they were involved - they were incredibly efficient, kind and practical, and supported us as much as DM.

And be really kind to yourself. It sounds as if you're already doing an amazing job - make sure you're being looked after too.

Make sure her LPOA and wills are sorted out and up to date

Thank you for all this, I’d not heard of the respect/purple form so will add this to my list too.

Thank you so much. Reading all these replies is making me think that the various teams around her will be a lot more efficient and proactive than I could’ve hoped. I was worried she would come home and then we would be stuck and struggling and then trying to follow up on extra help but sounds like they will be all over this

She definitely has a will as her and my step dad did one together not too long ago. Will my step dad be the power of attorney? As in is it normal for that person to be the spouse?

I'm sorry to hear about your Mum.

A lot of good advice here, I too was going to say contact your nearest hospice. They don't only help people who wish to be cared for in the hospice, but also those having palliative care at home.

I would try and have a serious conversation with your Mum about things that need to happen when she is gone. I had to have this conversation with my children when I was about to have an operation that I might not survive (thankfully I did) and although we both cried, I felt relieved that I had told my daughter as much as I could about what needed to be done and what I wanted, to make things easier for her in due course.

For example does she want to be buried or cremated? Does she have a will? If so where is it stored? Who in her address book would she want you to contact to notify them of her passing? Does she want to tell you the pin for her phone so that you can access it? Any passwords she would like you to know. Does she have any life insurance policies and if so where are they kept? Are her bank accounts all joint accounts with your father? If not, where can you find the account numbers etc.

Your Mum can appoint whoever she wishes to be her attorney. Even more than one person) In my case, I chose my child, not my DH, because I know he would be useless if he had to speak to the surgeon to decide what decision to take on my behalf and I also thought my child would be better able to liaise with financial organisations etc than he would.

Do get some information on what to expect in the last days/weeks. Going through active palliative care with a parent was quite a distressing experience for us (the family decision makers) in the last weeks. My parent was not in pain, but it would have been so much less confronting if we knew what the body does in preparation for the transition. I don’t say this to upset you, and I wish you and your family all the best.

Thanks for this, yes these are all questions I would need to ask. It’s so hard broaching this isn’t it? I think I will write a list of questions, including these, and wait till she has recovered from her chest drain and see how she’s feeling. A part of me is hoping for a miracle that this will massively improve her quality of life and we can kick all these worries another 6 months down the road.

This is exactly what I’m worried about. So far I have done a lot of the sorting as my Step Dad is a little lost without my Mum. We took him out for a couple of beers last night and had a good chat. I think I may suggest this to him so that I can support him, especially when it comes to talking to the medical team etc.

Really sorry to hear this. My younger sister is a nurse so we are lucky in that our immediate support network has that wealth of knowledge and understanding already in that respect. I worry about my brother and other sister. And for myself I guess, I’ve never seen anyone dying before. I think this is something to try and learn about and get my (nurse) sister to explain to us all gently and help us come to terms with this.

Does she want only family visits? Have you asked her what she would lrefer

Yes, I asked her if she wanted any friends to visit, including friends from work, and I’d get in touch with them to coordinate, but she asked for just family at hospital.

That's fair enough.

There are lots of people who make decisions for the " good" of someone else without actually asking them what they want