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What do you think? - Carers UK Forum

What do you think?

For anyone who is bereaved or no longer providing care.
I hope you don't mind me posting a message on here. I was sad to read your messages and would like to send you my thoughts and sincere condolences. Having spoken to quite a few carers over the years I have am aware of what a huge void it can be when the person you're caring for dies and how hard it can be to piece life together again.

Often carers tell us that they wonder if they did enough for the person they're caring for. Sometimes people wish they were told more about their loved one's condition and what to expect when they died. We find that one of the big things about care at the end of life and when people are bereaved is that we find death and dying such a taboo. People seem to find it so hard to talk about.

I'd be really interested to hear your thoughts on this. Does it resonate?

We are trying to produce materials to help people broach these conversations in order to help people feel more prepared and to save unnecessary heartache after people have died. There is more information about it at www.dyingmatters.org

Thank you for

I am not bereaved, yet. I care for my husband who has end stage COPD. He's gone through several spells in the past four months where the expectation was he would not survive, although he did.

IMO although everyone (doctor, district nurses, palliative care nurse, even carers provided by the NHS) asks how I am doing there has been no offer of help to prepare me for my husband's death. I know about Cruz counseling only because during the Summer I spent a few weeks talking to a counselor at my local hospice.

So these are my suggestions for anyone caring for someone who is near the end of their life:

1) Information about what happens to someone physically when they are close to death, provide BEFORE they reach that stage.
2) Information about what to do when someone dies. I have a booklet and I know this is available on the internet, but it would be so much better if this could be provided in person by someone before it happens.
3) Information about counseling services available. Ideally, a counselor would contact the individual early on (e.g., before death occurs) for a brief chat. The purpose would be to make it easier for someone to reach out after death occurs. Even better, that person should be available before death occurs to support the carer.
Stacey has said everything that I too feel would be helpful. My biggest problem with caring for someone who is obviously at an almost "end stage" is the unknown. I realise there is no text book case for each individual, whether they are suffering with dementia or some other horrible illness, but I do feel I would cope better just knowing what to expect.

Chris [/quote]
Thank you both for replying. What you have both said is a familiar message. As one carer put it 'I can cope with the knowns, but not the unknowns'.

Stacey - I'd be really interested to know which booklet you have and where you found information that helped. Is it specific to COPD or general?

And Christine - when you said about knowing what to expect - do you mean in terms of what might happen as the person nears the end of life or dies, or other information?

With COPD - we've just spoken to a number of people affected by COPD to ask their views about communication around end of life issues. If you like, I could send you a copy of it when it's done, and I'll feed your comments into it too, as I haven't finished the guidance yet.

Do you find it possible to have conversations about this kind of thing with the person you're caring for?

With best wishes


The booklet I was referring to has a title something like, "What to Do in England When Someone Dies." It is missing key pieces of information, like what to do if someone is inconvenient enough to die on a Saturday or Sunday whilst at home. The booklet says to call the GP, not possible on the weekend or evening when most surgeries are closed. I asked the palliative care nurse what to do in that case, but the booklet should provide it. I'm sure it's the same info in the booklet that's available on the web.

Jo, I'm not sure what you mean by "possible to have conversations about this kind of thing with the person you're caring for?" Conversations about what?

Thanks for the offer of the booklet on COPD, but I'm afraid my husband has reached the stage that by the time it got to me it is unlikely to be needed by me.
Even if someone dies in hospital on a Saturday or Sunday it is an "inconvenience".The undertaker can come out to see you, but nothing can be planned, if a postmortem is needed,and if a person has to be identified,(even if you are with him/her when they die), the police still have to make an appointment with you to make an official identification, which, in our case, had to wait until after the weekend,(the death occurring at 5.30pm on Saturday evening).We were only able to have the PM done on the Monday because our excellent undertaker knew the right people to phone.It also made the possibility of organ donation difficult, because of the time factor.
Dear both

Thank you for telling me about the booklet. I'll have a look for it. A few people have mentioned before about how hard it is when someone dies at a weekend or on a bank holiday. It sounds as though it would help if there were guidance about what to do in that situation. If there were guidance - what do you think it should contain? Practical information about what to do and who to call and so on?

Stacey - sorry to be unclear. When I mentioned 'talking about these things' I was interested to know whether you found it easy or difficult to talk what's important to you both at the end of your life? Quite a few people say that they would like to talk about it, but don't know how to start the conversation.

Best wishes

Just to let you know that Carers UK has produced a booklet with Help for Hospices when Caring comes to an end http://www.carersuk.org/Professionals/O ... tsbooklets
Just to let you know that Carers UK has produced a booklet with Help for Hospices when Caring comes to an end http://www.carersuk.org/Professionals/O ... tsbooklets
As well as the book "When caring comes to an end" we also have a section on this website

Yes when I say "what to expect" I mean physical changes in a person. My mum is pretty awful at the moment and I panic, wondering if this is it....will she make it through another night... there seems to be so much going on with her that I don't understand if there is something else wrong, or is this how it is when they are preparing to die. I just wish I knew.