What do I do?

Not a stupid question at all, so sorry you're going through this. I had all the same thoughts with my mum who is currently having EOL care but now in a hospice. You may find the below link helpful. 

https://www.ageuk.org.uk/information-advice/money-legal/legal-issues/what-to-do-when-someone-dies/

Hope that helps! Just wish is wasn't something we had to think about. Take care

Absolutely reasonable question. If I'd not read "the beginners guide to the end", I'd have probably called 999 which would have been a disaster since they are obliged to try to resuscitate. Which would have been very distressing for everyone.

If you are under the hospice you can call them. Otherwise call your GP.

There is no rush though. My wife died between 4:30 and 5:30am. After if day with her for 5 minutes to make sure I want being really stupid, I called my kids downstairs, then called mother in law. We all sat with her for a few hours, trying to come to terms with what had happened.

I called the hospice at about 8. They sent a nurse at about 9.30. She did the confirmation that there were no signs of life, then decatheterised Fi and helped me to get her dressed. She also took away various medications and other paraphernalia.

Only then did I call the undertaker, who came about 2 hours later. Letting her go for someone else to look after her was the hardest thing in the world.

So my point is... Don't feel rushed. Don't feel it has to be medicalised. It doesn't. You can take your time to say goodbye.

Your hospice or palliative care team should also be able to talk you through this stuff.

Hope that helps...

Pete

it does help thank you. I feel so alone, we have not been given any palliative care contact, or hospice. The only number I was given is the community nursing. I am also looking after my 88 year old mum, this morning I realised I can no longer cope. My partner and I discussed this and we both agree hospice care is the only way forward. She is unaware how much time she has, she asked not to be told. I know, and its not long. In these last precious weeks, I want her to have the best quality care, and I am not it. I am absolutely doing my best and would continue to do this for months if I had to, my concern is quality of life for her. she is in pain from her back and being unable to move about, she has a sore at the base of her spine. She needs to go on the commode at random times through the day and night and cannot hold it. Therefore carers are not an option. I have no one to contact and am at my wits end. I am so exhausted that I cannot give any decent level of care that she needs and deserves. I have no idea what to do or who to contact.

OK - so you need urgent practical help then...

I'm 95% sure your partner can self-refer to the hospice - in which case you can make a call today.  If not, go in via your GP tomorrow.  Basically you need to tell them what you just wrote to me.  They should take you seriously because it sounds like, if they don't look after you, the NHS will have three people to look after - not just one.

So start by calling your local hospice which you should be able to find on here... https://www.hospiceuk.org/hospice-care-finder

If (once you have recovered your wits a bit) you feel that you are not quite ready for your partner to go into hospice care (in-patient hospice care is normally for the last couple of weeks of life) - then the hospice may be able to arrange  beefed up (fully funded) care package at home by doing a CHC (continuing healthcare) assessment.  

Whatever they do it will likely take them at least a few days to assess you and work out how best to help you.  

In the meantime, is there anyone around (friend or family member) who you can call just to come and spend some time with you over the next few days?  Maybe to give you a chance to get out for an hour.  Or even go upstairs and sleep for an hour.

You can also call the Macmillan Support Line on 0808 808 00 00, or click on "ask an expert" above for specific care advice.

I wish I could say more... I can tell you are at your tether's end.  Thank you so much for all your are doing looking after your partner.  You are engaged in an heroic enterprise - it is such an important job.  It sounds like you are thinking in the right way - so just focus on getting through today.

Sending hugs...

Pete

Thank you so much for your kindness. She only has a few weeks, although she is unaware of this as she asked not to be told. I do have friends and family support but although they can be there for me emotionally, practically there is little they can do. I have PTSD, depression and acute anxiety for which I take medication (I am not bonkers, honestly!) I have forgotten to take my meds for the last 3 days which isnt helping. I can feel myself falling apart and dont know where to go. Having calmed myself down a little, I have decided to do nothing today, just give her the best care I can give, and to make some calls tomorrow. I have the number for the McMillan team at the hospital where she has been treated, should I call them first do you think? Thank you so much for your help, it means a lot. 

Hey...

It's OK to be bonkers.  So long as you remember to take your meds. 

Well done for settling yourself down.  That is a hard enough job in itself when you are in the whirlwind.

You could call the hospice today regardless?  At least you will get to talk to a real human being who can tell you what support they will able to provide and reassure you in regard to any specific questions.  (Though it will be Sunday service, so they may simply suggest calling back tomorrow :).) For instance, they will be able to tell you if you can self-refer or need to go via your GP. 

It's just a conversation - not a commitment to do anything - but I hope that an initial discussion with someone there will reassure you that the help will be there when you do need it.  It will also get you onto their radar - which is not a bad thing.

The hospice, your GP or the Macmillan team at the hospital will be able to advise you.  I suspect that the advice may be to call the hospice - which is why I would probably start there.  But whatever you decide is fine.  So long as you call someone today or tomorrow, please!  

Pete

Thank you. I have phoned the hospice, they cant do anything without a referral, so advised me that first step is Palliative care team or GP. Given how utterly useless our local surgery is, I am going to start with Mcmillan palliative care team tomorrow. Thank you Pete, you have helped more than you could ever know.

Hey... Glad that you have managed to talk to the hospice.  Definitely start with Macmillan - but otherwise make yourself a nuisance to the GP.  You may find that your GP surgery becomes a lot more useful if you start every phone call (or eConsult) with "my partner is in end of life cancer care".  I think that tends to focus people's attention.  We had a couple of months in that state and found that our GP surgery (okay - one GP in particular) and also our local pharmacy began to really look after us.

In any case...  you've had a tough few days.  If I've managed to give you a little bit of support then I'm delighted.  I hope that you and your partner get the responsiveness you need and deserve from the various professionals.  Look after yourself.

Pete

I had emailed palliative care and the hospice, both have called me. The hospice took lots of details and passed it to palliative care. They rang me late afternoon, pretty much told me not to get my hopes up of a hospice place, she said hospice was for final days of life, but nhs website says the criteria is an incurable illness with a life expectancy of 6 months or less, so I am more confused than before, someone from PC is coming out to see us tomorrow "to see how they can support us". Looks like our only option will be to pay for proper care. 

Okay...

Sit tight. There's lots going on and a lot changing around you. Have the conversation with PC tomorrow. The fact that they are coming out so quickly shows that they are taking you seriously.

Write down how you are feeling and what you need and any questions.

Ask them about CHC (continuing healthcare assessment). That is the funding route to get carers in.

Let me know how you get on.

Pete