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.

Things I put in place (some already covered but it’ll be a bit of a brain dump for me)

Make sure her GP is up to speed on your mums health. Ours visited fortnightly - as much to keep abreast and to keep an eye on dad.

Get a hospital bed. The Continuing Health Care team should be able to help with this.

Anticipatory drugs as above.

RESPECT form and whether you want resuscitation.

Stairlift? We got ours partly funded by LA.

Zimmer Frame.

LPOA for Health and Wealth

Get your name added to your mums hospital / doctors notes as someone they can discuss her needs with. Mums GP had a form we completed, the hospice just took mums verbal consent.

We bought an electric wheelchair. Game changer - allowed mum to have a small semblance of normality.

I’m sorry you’re having to go through this.

on a practical side, make a list of all accounts, online logins etc.

Yes, and I want to avoid falling into this role, as it wouldn’t be intentional. The first day she was in hospital, 6 people turned up at once, which isn’t fair on the other patients, or on the staff who are trying to do their job. So we kept a rota from that point and I double checked with Mum who she would really like to have visiting, as it’s restricted around protected meal times too. Plus, she hasn’t got the energy to ‘put it on’ for any length of time.

If your mum is religious, then having her local religious leader come round for a chat once she’s home can help with any future planning - and is another ear should she want to talk to someone who isn’t you/your step dad.

Best of luck, do take care of yourself. It is a really tough time. Hospice nurses really are brilliant at this and can answer most your questions and know the routes to expedite things.

Ahead of time, making sure step dads name is on all the bills to make things easier after. And try and get a list of bank accounts, insurance etc ahead of time (and phone passcode).

Thank you for this. Mum had already put me down, as well as my step dad, as an emergency contact so I can get information and updates straight from them, which is helpful as mum doesn’t always remember everything she’s been told which is understandable.

Ive added all your other points to my list, thank you.

Thank you. She doesn’t use social media or anything really, but will make sure we have access to emails. I’m trying to think of stuff that eventually will need updating or closing down, and I imagine most of it will be done via email or through email verification.

If she and your step dad aren’t married (and even if they are) your mum needs to ensure that she has a will, and that wishes for eg funeral are written down. Apply for powers of attorney if not in place. If she no longer has capacity for the above but is able to have basic communication you can still note things down. It will be easier for all especially your step dad if you all know what she wants

Yes, when my Nan (Mums Mum) died, the Reverend came to her flat a couple of times where we all were to give blessings. I’d like to arrange similar for Mum when we are approaching that phase.

I would like to speak to the Church in advance of everything, to find out what options we have and then, when it’s appropriate, share this with Mum. We already know she wants the hymn Jerusalem.

Also as sad as it is to start doing this, make a list of those who need to be informed at the end, those as she’s nearing the end and those after she passes away, nobody knows how they will react so having things written down mean you can pass it over for someone else to handle even

Yes they’re married, I’ve just googled applying for Powers of Attorney and it seems straightforward enough although it does say it can take 8-10 weeks as long as there are no errors in paperwork, so I will speak to my siblings about doing that, and if they’re happy for me to take on that responsibility.

Also, someone mentioned up thread about resuscitation. The Drs had that conversation with Mum and my 2 sisters last Saturday. That was really difficult for my youngest sister, but an important conversation to have.

It’s a really good idea to have this all written down to delegate if needed. I’m coping well at the moment in survival mode but do worry that when she dies it will hit me full force. Thank you for this.

honestly, there's so much stuff and every organisation has different methods of communication. Check utility accounts etc to see if they're just in her name or joint names, and if your mum and step-dad have a shared account or it's coming from a single account. Also check for any direct debits or subscriptions that will need to be stopped or amended. Does someone know where all her bank accounts, savings, pensions etc are.

I know utility accounts are in their joint names as I only set them up 4 weeks ago. Good point on the subscriptions and direct debits, she will have all sorts coming out, including a family Netflix plan so I will have to update that! I’m on top of the pensions as I’ve been helping her with applying for her ill health retirement. At some point, I’ll ask if we can go through her direct debits and subscriptions and a) do some house keeping to see if she even still needs them all and b) take down details of what will need to be stopped.

Anyone can be power of attorney. It is usually the person’s spouse or adult children, but doesn’t have to be if the person would prefer to appoint somebody else (and they’re happy to do it). I know my neighbour has got her solicitor as her POA due to being widowed and not wanting her (arguing) adult children to be asked

There are 2 to do. Finance - which can be activated any time, and health and welfare which only comes into force when (if) the person loses mental capacity to make decisions for themselves.

Both are important.

I spoke to the Macmillan nurse on my own, as I wanted to get an idea of what we were facing. I wanted to understand the likely progression, rough timelines and what to expect, to help plan realistically for the remainder of mums life, what she may be able to do etc. While everyone is different, the information she gave me proved very accurate.
Its not for everyone. Some people prefer to take things as they come, but it helped me to know roughly when trips, going out, visits etc would no longer be likely possible to make sure I arranged what mum wanted to do in good time.
I'm sorry for your situation. Sending you strength.

I'm sorry that you're going through this 💐

Are you able to speak to your mum open and freely? I would talk to her, doesn't have to be a scheduled talk but more of a light chat chat... Ask her if she is scared of anything, is there anything that she would like put into place, hospice etc. I also told my mum when we had a private moment how much I loved her, and what a good mum she was to me and my siblings. We spoke about a few things that had happened over the years and TBH this really helped with my grieving process as I had no questions un answered, it gave my mum the opportunity to tell me that she was proud of me etc... There were tears and lots of love. It is a hard situation to navigate, and everyones circumstances are different.... Don't have any regrets x

It's an incredibly hard situation OP. Look after yourself, as well as your mum. When we went through this, it was a combination of dealing with our own anticipatory grief and shock, trying to look after my parent and advocate for them, and dealing with practicalities like where paperwork is (will and executor details, pensions, passport, bank account, address books, utility company, house deeds etc). We just tried to spend time together too.

My dad had pre-paid/planned his funeral and left a lot of detail to help us organise it, which really helped. Whilst it's sad and something that's very hard to think about, it might be a good idea to start noting down her wishes for the funeral now. It will make it far easier when the time comes as you won't need to 'guess' what her preferences might be. It will help, if you already know which funeral director will you use so you can easily call them, especially if she is planning to return home for her final days. They'll guide you through the funeral planning and the initial paperwork needed by the registry office. What music, songs, hymns, poems, flowers, photos etc does your mum like? For you, if there will be a eulogy, what do you want to include? What are your mum's best memories / most significant experiences? What does she want to be dressed in? Who are/were the most significant people in her life and who will you need to contact (and how, does she have an address book)?

If she has time to go home, have you been put in touch with your local hospice and Macmillan nurse? Will your mum need carers? Will your GP put you in touch with the local district nurse team and let you order repeat prescriptions for her, as needed? Our local hospice was fabulous. They gave my dad quicker access to OT, physio and hosted activity days that he went to for a while. The Macmillan nurse visited regularly. She talked to dad and gave him an outlet for questions he didn't feel he could ask anyone else. The district nurses visited a few times a day to check dressings and to check on pain relief, including in the care home he moved to for his final days. There was information online (one of the main cancer charities) describing what happens as people die of various different cancers and what the terminal slide is like.

If she has time you might need to look at registering a power of attorney for a few family members for finance/medical and putting these in place with the bank/GP. (My dad had made his bank account a joint account with my mum (his ex-wife) so we could use his funds to pay for the funeral as the account automatically transferred into her name when he died and it took a while to get the will registered.)

The well known online shop with super fast delivery service and our local 24 hr supermarket were a real help. We could quickly buy what my parent needed to make him more comfortable (clothes, cushions etc).

My heart goes out to you, OP. It's a tough situation for you all. Hugs xx

I'm surprised they let 6 people in at 🔂

My mother had to move into a hospice which was prearranged. Throughout the last few weeks of her life she wanted me to do her hair for her. Just a little thing but it made all the difference to her. The hospice arranged for a hairdresser to visit her which was so kind.

Just coming back to the thread to say thank you so much to everyone that left a comment and a list of things to think about. I spoke with my husband at length about it last night which has helped share the mental load and think about where to start. I also really appreciate the kind words, and wanted to express heartfelt thanks to the support you’ve all given. And I’m so sorry that so many of us have experienced what me and my family are currently going through.

3 sets of 2 arrived within 10 mins, and it’s not policed as such so easy to wander in (after being buzzed onto the ward). Plus, not everyone had enough awareness to think maybe it was inappropriate which meant I had to hurry people along which made me feel awful. The rota is working well for us so far.