Hello all

Julie 9 years ago

8 replies

My name is Julie and I am one of the Marie Curie nurses that work night-shifts.

I am very lucky in that I have not come on the forum for support for a loved one as many of you have.  My heart goes out to everyone struggling to come to terms with their own personal journeys and trying to understand one of the biggest questions I hear which is "Why?"

My thoughts are with everyone struggling on here and my thanks to those who fund-raise for such a wonderful charity as Marie Curie which enables me to go out on a night-shift to help those in need.

Julie x

TheHodCarrier 9 years ago

Hi Julie,

I'm wondering how you answer 'why ?'.

My own answer, would be 'there isn't a why - these things just happen, and often seem 'unfair''.

TheHodCarrier (aka Mike)

Julie 9 years ago

Hi Mike

I agree with you that there is not a definitive answer to why, in fact, there isn't even a partial answer to why.  Depending on who was asking me and in what situation I would try to listen and find words to support.  There is no reason why it is happens to one person and not another, there is no logic as to a good person or a bad person dying "before their time". This is often part of what is described as an "anger" stage of the grieving process if you believe in the research that Elisabeth Kubler-Ross has written about.  

I find that often people already know there is no answer to the question, and the fact that they are asking me is often them trying to come to terms with it in their own minds and listening to them, allowing them to express their emotions, can often be far more helpful than words.

TheHodCarrier 9 years ago

Hi again Julie,

I feel fairly sure that you are right - 'asking why' is sometimes similar to 'kicking something [innocent - like a wall] in a rage'.

I've been pointed at the Elisabeth Kubler-Ross stuff by nurses, and I did check it out: I'm not sure that I am 100% with the theory, at least in its 'simplest' form.

But it isn't really relevant to my EoL concerns, because I don't think her theory deals with the time of most interest to me: which is the hours immediately following a death at home, and the behaviour of various professionals during that period. I recently cobbled together an EoL Timeline created from first principles , and I divided the post-death period into two sections. The first one I defined as 'The period between the death and attempting to go to sleep.'  The following period I defined as 'The longer-term ‘grieving process’ in the days, months or years after the death.'

I explained that I had settled on these two periods because:

'in essence, I believe that the day of the death itself 'is about the creation of long-term memories', whereas the days and months after that, are about 'dealing with those memories'.'

HCPs discuss the 'dealing with the memories' bit quite a lot - I would like rather more discussion, about behaviour in that immediately post-mortem period, and whether contemporary behaviour for EoL home death, is actively [and unnecessarily] creating 'trauma memories' when more balanced behaviour would be less damaging to live-with relatives.

                                                        Best wishes, Mike

Julie 9 years ago

That's very interesting Mike.  I think with many things that people compile as reference material will bring meaning to some people but not to all.

When you say "more balanced behaviour" would be less damaging to live-with relatives - what do you mean exactly?  Sorry, I am a little confused

TheHodCarrier 9 years ago

Hi Julie,

I'm told by MC that this community forum isn't intended for 'analysis', although the reasons why not do not seem to apply to you, or indeed to me.  So I'm not sure if this will be removed, or not - but I'll point you elsewhere. What I mean by 'more balanced behaviour' is essentially that there is a fundamental problem with the concept of 'expected death', and combined with the way that police seem to treat all home deaths which are not formally 'expected' as de facto suspicious, that isn't fair on the people living with EoL patients.  You can find a better explanation of the problem, in one of my Dignity In Care pieces (url below: quite lengthy, but someone needs to explain this stuff, almost 'from scratch', if it is ever to be properly sorted out). By the way, you can download attached files from the DIC forum without registering with the website - you only need to register, if you want to post material or comments.

http://www.dignityincare.org.uk/Discussanddebate/Discussionforum/?obj=viewThread&threadID=759&forumID=45