Help with dying at home and arranging a funeral

[SkyBlueSky]

With utter heartbreak I have to ask for advice on what to expect with my DSis' death. I hope this is the right place, I don't want to upset anyone.

She wants to die at my parents home, not at a hospice. I will be staying there too with my DC and DH hopefully I'll be there right at the end. Her liver is failing due to cancerous tumours. We have had one visit from palliative care who are helping her with the incredible pain she is in.

What do I need to ask of them? What can I expect of a death at home? Do we need sedatives just in case, or get her permission re: a DNR? What do we do if she goes into a coma or gets very delusional?

She has no will, no children or husband.

I've also never organised a funeral, but I know what songs and readings she wants and who to carry her in etc. we talked about that yesterday.

I bought her cards if she wanted to leave messages, but she's too tired at the minute. I want photos with her and my DC but she seems repulsed by her appearance now. So I don't want to push it.

Any advice practical or emotional will be gratefully received.

So sorry to hear this. My father died at home last year. The hospice were able to send staff to care for him at home. They called in a couple of times every day over the last 3 days to administer pain relief and make sure he was comfortable, and on the last night 2 staff stayed with us and him all night. They were absolutely brilliant and it meant so much to all of us that we were able to do this.

I don't know how hospices really work but it didn't seem difficult to arrange this. I think the Macmillan nurses must have put the first arrangements in place - does your DSis have one?

In terms of advice, I'd say try to look after yourself as well, or make sure there's someone you can turn to for support. I found myself torn between supporting my Mum and trying to minimise the shock to my DC. People react to this kind of thing differently and it's hard to predict who will cope best.

I'm so sorry that you are facing this.

Theres some really good, practical advice from Marie Curie about end of life care and managing things at home.

Your local hospice will usually be able to provide 'hospice at home' support, and you may be able to get a Marie Curie nurse as well. The palliative care team would need to refer her and you, so best to get that started now. There is also the option for your sister to spend some time at the hospice to get pain or other symptoms under control, just as a day patient or a short stay, before she is right at the end. People often think that hospices are just somewhere you go to die, but theres a lot of living that goes on there too.

Thank you, that's really helpful. I will see if I can get hold of the palliative team and ask about hospice at home help. I know what you mean about who will cope or not, after a rocky start my DM has now been amazing, I was the strong one and now I'm crumbling.

I'm so sorry you're facing this awful situation. It's frightening and makes you feel very scared and alone. District nurses are another source of help you could call on. I wish you every strength to deal with what lays ahead and hope you get the support you need to get through it.

i worked for Macmillan in the community.
please do not feel alone or scared to ask questions.
not sure how it works in all parts of uk. Macmillan nurse worked in close contact with GP. palliative care team often better informed on analgesia etc.
often have macmillan carers staying over at night to give family a rest.
Never be worried about asking for more pain relief etc. I remember one young man whose family worried about contacting us twice in one night, never a problem. he passed in peace, with his young wife holding him.

Sorry this hapoening to you and your sister. Much hugs.

If you are feeling up to it have a read of my thread on elderly parents. I have recorded in detail my mums death at home 10 days ago.

She will come home with everything in place for a peaceful death. I'd hope she already has a DNR and that will travel home with her paperwork from wherever she is now. Keep it at the front of any folder of notes or other " stuff" you have and readily to hand.

She will also come home with her pain/ other symptoms controlled . If her pain isn't controlled then things need changing re her drugs until it is - that might mean lots of morphine, other drugs , steroids or even things like nerve blocks - iv one thing doesn't work just help her to let her medical team know - as Kilmur says the team will come as often as needed- they did for mum. You will also have oral " in case" medication as well as all the injectable stuff that might be needed so at any point the palliative team / district nurses/ gp or whoever can use them for pain / nausea/ hallucinations or any other symptom you can think of.

In my life when im not being a bereaved relative ( which has rather taken me over at the moment ) Im a GP myself and ( gosh I hope this isn't the wrong thing to say) IMHO death from liver failure is of itself quite " gentle" with increasing sleepiness, slipping into coma, though confusion might be an issue agitation can be well managed and being at home with her family is im sure right for your sister, though awfully hard for you to watch.

Probably said too much. Deeply sorry if so but you seem to be looking for practical answers.

Pm me if I can help at all - my listening ears and broad shoulders are still working.

Re other practicalities - she has no will. If she is still mentally ok it is probably worth getting her to do a simple one just to say who she wants to leave her estate too and who is her executor. That can be one off the internet I reckon or even just a note stating that she is of sound mind, wants to leave her things to whoever and appoints person x to manage her affairs, and get it witnessed. I believe if she makes no will her estate goes to your parents but intestacy even in simple cases can be difficult.

Funeral wise you have made huge strides into that- well done. Have you chosen a funeral director? We were really greatful that we had a number to ring ready for when mum died.

From " the other side" of it all I reckon if you sort those two things you can just concentrate on taking things day by day or hour by hour after that.

I would say don't worry about the will issue at this point, unless she owns land, property or shares then you don't need to get probate, it's very simple to sort out. I did it for both my parents who died without wills - and yes for a child without spouse or children their estate goes back up the line to the parents. Just concentrate on helping her have a good death, be comfortable and with a little distress as possible.

Thank you everyone. She's very angry and afraid of death. I don't know what I can do to help her accept this, if anything?

We have the pain thankfully under control now, injectables on standby.

I put the radio on and read to her yesterday but it seemed to make her sadder. She has so many visitors but that can go either way too. Helplessness is crippling, but I'm still giving her vitamins and green smoothies.

I gave my mum smoothies and home made soups right til the end. Mainly cos it was all she could swallow but also because i felt i was doing good and hope is a very important thing. Even when the end is hurtling towards you like a runaway train, don't underestimate the power of hope. And I don't mean necessarily the hope they will get better cos u know in your heart that isn't going to happen but my experience was that hope was very important.

The funeral directors will help with details of funeral. We had a humanist speaker leading my dads funeral, all his fav music. helped on the day as brought back lovely memories.
all here for you

Op: after she has passed you may want to sit peacefully with her for a while, before you phone the GP or McMillan to inform them of the death.

IME once you have informed someone of the death, it seems to be a legal requirement for the undertakers to get involved and then you get a house full of people, who are all very respectful but you don't get much of a chance to sit quietly with the person who has passed.