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You and Yours - End of Life Care

93 REPLIES 93
ForumMember
Member

Re: You and Yours - End of Life Care

Hi patricia

I have been thinking of 'end of life' even though according to my medical team, I am low risk of cancer returning ( but I think we all know that caner will please itself on that score). I watched a programme early this evening which showed a sick and elderly tiger being put to sleep, and could not help thinking why the same approach can not be afforded to humans. Although I feel that this debate will go on long after I have expired, I wish that some day people who are terminally ill can make the decision on how they wish to end their life (assisted death with Dignitas for example) without loved their ones being implicated or having to suffer any guilt that society imposes on them.

LOL. Pencil.

ForumMember
Member

Re: You and Yours - End of Life Care

The issue is certainly getting a lot of media attention which is a good thing in my opinion. Have just listened to a phone -in on radio five live. Interesting the responses from listeners. It appears that prosecutions will not take place in most cases involving terminally ill people as not deemed to be in the public interest.

JaneRA
Member

Re: You and Yours - End of Life Care

Yes its in most of the papers...read a graphic account in the good old Mail in Starbucks.

It sounds as though the guy being filmed clearly thought things through and did the filming because he wanted to open the debate to more people. Haven't got Sky myself so won't be able to watch.

A decision has been taken not to prosecute the parents of the young rugby player who recently accompanied their son to Switzerland. Yes this probably does have implications for other cases.

Still haven't got round to watching Panorama...
Jane

Jennywren
Member

Re: You and Yours - End of Life Care

There is an article about this in todays Guardian (and doubtless other papers). The suggestion is that there will not be further prosecutions in cases of assisted suicide.

ostrich
Member

Re: You and Yours - End of Life Care

Just wanted to pass on that on Sky Real Lives tonight at 9pm they are showing a video of a terminally ill man taking his own life through assisted suicide - the programme will show a 59 year old man with motor neurone disease take a fatal dose of barbituates with the cameras rolling. Thought some of you may be interested, x O - you can read a bit about it on Sky New's website.

Jacksy
Member

Re: You and Yours - End of Life Care

Oh Debs, that's so annoying....
Jxx

debsincornwall
Member

Re: You and Yours - End of Life Care

Thanks Jane for the poems they suit where I find myself at the moment. Will be recording Panorama, as a good northern girl will be in Weatherfield.
I had picked the music for my 'No longer here service' Gutted to discover first piece of music Sung by Jeff Buckley will be the X Factor winners song. Everyone will think I am such a copycat and I picked it last December when I entered s.it or bust time.

Love Debsxxx

JaneRA
Member

Re: You and Yours - End of Life Care

Just bringing this to the top to remind anyone interested that Panorma is looking at assisted suicide tonight (8.30pm BBC1) The Scottish MSP Margo MacDonald who has Parkinson's disease is investigating the 'underground suicide' movement in the UK. Looks interesting though I'll probably record as clashes with Coronation Street....

Jane

KatieP
Member

Re: You and Yours - End of Life Care

I have just reread the thread and hope people keep it going with their thoughts and memories, everyone's experiences and different takes on situations encourage you to maybe look at issues slightly differently.
I was interested in Jackie's comment about the children being scared to go upstairs if you died at home. I do think that my daughter in particular would find this hard , when I had the news in September that I had further spread she did struggle with being on her own and it often takes time to deconstruct what is actually at the bottom of her fears. I am told by the MacMillan nurse that there will be support and I hope that this is the sort of issue that can be worked through. At the moment we are concentrating on the living!
Faith is another issue that I am trying to work through. My parents had very strong faith and Christain beliefs and we spent our childhood Sundays in church and Sunday School so I rather turned my back on it as a teenager but did take my children when they were small more to try to please the family who worried that they were going to be little heathens!
I did find that it was a comfort and reassurrance after my mother's death in particular and feel that I would want a church component to my funeral as it seems important to me that my family has that ritual and sense of solemnity. I haven't got to the stage of writing anything down but have thought of favourite hymns and readings. Some will have to be left as I don't know how much my children would want to participate or whether they would feel able to. I would like them to play their instruments as their music is something that has given me great pleasure. One lovely moment in my elderly aunt's funeral was one of the grand daughters reading the 23rd psalm while the other accompanied her on the violin. .
So thanks everyone for your thoughts
Love Kathryn

dippykate
Member

Re: You and Yours - End of Life Care

that sounds interesting - please keep this thread alive so that I don't forget to watch the programme.
Thanks Jenny for bringing that to my/our attention
Kate

Jennywren
Member

Re: You and Yours - End of Life Care

I just heard Panorama, next Monday, covers the issue of Assisted suicide, should it be legalized.

Jenny
x

JaneRA
Member

Re: You and Yours - End of Life Care

I think the afterlife gets talked about in church R. but that's different.

I don't want to die because I know that will be it and I so love life..so much. Thought of Philip Larkin's bleak long poem Aubade just now. Here is just an extract which rather sums up how I feel:

from Aubade

Not to be here,
Not to be anywhere,
And soon; nothing more terrible, nothing more true.

This is a special way of being afraid
No trick dispels. Religion used to try,
That vast, moth-eaten musical brocade
Created to pretend we never die,
And specious stuff that says No rational being
Can fear a thing it will not feel, not seeing
That this is what we fear - no sight, no sound,
No touch or taste or smell, nothing to think with,
Nothing to love or link with,
The anasthetic from which none come round.

Philip Larkin

Liverbird
Member

Re: You and Yours - End of Life Care

Really enjoy Julias poems.
Not long after i was Dx her extracts from her diary were read on Radio 4. A very interesting woman.
Ostrich you just say what you feel and as someone said we are all entitled to our opinions on things.
As long as we respect each other it then makes for interesting reading especially on a thread like this one.

I know a lot of people say death isn't talked about much in everyday life but actually if you go to church its talked about a lot.

Rx

Kay123
Member

Re: You and Yours - End of Life Care

Thank you for the link to Julia's website, Belinda. Have just spent 30 minutes or so "browsing" and then come back on here to post quoting "how to behave with the ill" because I think it says it all! You beat me to it, Jane!

Wondering whether I should send a copy to all my friends/colleagues.......

K x

JaneRA
Member

Re: You and Yours - End of Life Care

For those who don't know it this is another of my favourite Julia Darling poems. I wonder whether our freinds do 'get' these poems in the same way as us. I have this poem on my webiste...aand yesterday I had a strange interaction with a friend who touched my arm and apologised a bit too quickly. I thought it was because she realised it was my swollen lymphoedma arm but I think on reflection she must have been thinking of the poem. Maybe that explains why she didn't ask how I was as well! I will hug the first friend who has the courage to say: How's the cancer?

How To Behave With The Ill

Approach us assertively, try not to
cringe or sidle, it makes us fearful.
Rather walk straight up and smile.
Do not touch us unless invited,
particularly don't squeeze upper arms,
or try to hold our hands. Keep your head erect.
Don't bend down, or lower your voice.
Speak evenly. Don't say
'How are you?' in an underlined voice.
Don't say, I heard that you were very ill.
This makes the poorly paranoid.
Be direct, say 'How's your cancer?'
Try not to say how well we look.
compared to when you met in Safeway's.
Please don't cry, or get emotional,
and say how dreadful it all is.
Also (and this is hard I know)
try not to ignore the ill, or to scurry
past, muttering about a bus, the bank.
Remember that this day might be your last
and that it is a miracle that any of us
stands up, breathes, behaves at all.

Julia Darling

Deirdre
Member

Re: You and Yours - End of Life Care

Oh, that Julia Darling poem is brilliant! I would love my non bc friends to read it, but I am sure they cannot surely understand how it resonates with me, and others in a similar position. HOw I wish I didn't carry around all these words. And even when I think I have collected them all, they still accumulate.

Thanks so much for posting these.
Deirdre

belinda
Member

Re: You and Yours - End of Life Care

Hi..Julia died of stage 4 bc in 2005, her website is (written like this so it's not removed by the mods) all the w's dot juliadarling dot co dot uk. I have 2 of her poetry books, ''Sudden Collapses in Public Places'' and ''Apology for Absence.'' These books deal with living with breast cancer, hospital visits, treatment, everyday life, some wonderful poems in both books. There's also a great book by Julia Darling and Cynthia Fuller called ''The Poetry Cure.' (Jane and Jenny I think you would like it) It includes various poets and the poems are put together in the following chapters, Admissions, Poems to make you feel better, What it feels like, For those we love, The Language of Pain, Healing Rhythms, Body Parts (and finally) Talking to the Dead. It's published by Bloodaxe Books. Julia also wrote novels. Her website contains her blog, well worth reading. I received my last email from Julia when I was changing from Tamoxifen to Arimidex, she wrote marvellous and funny, descriptive emails and I was touched by her kindness as she had only just got home from a spell in the hospice.
Belinda...x

Kay123
Member

Re: You and Yours - End of Life Care

I also hadn't come across this one of Julia Darling though I have read both the Mary Oliver ones before. I particularly like In Blackwater Woods and it is one of my potential funeral readings. Indeed I have actually just added one of her poetry books to my "wish" list for Christmas. Must go and seek out some more of Julia Darling's work now. I too find poetry often expresses for me things in a way that prose just doesn't.

I have not planned my funeral out in great detail but have thought about some readings and music. Like Deirdre, I have found it part of learning how to deal with my sec diagnosis - though I still find it hard to take on board that I won't actually be there! And also like you Deirdre, I feel my family will have a big contribution to make as I have far too much material (funeral would take hours LOL) so want them to choose from the selection I have put together. I think that will help them and make my funeral very personal and about me and about them - some items of music have very special memories both for me and some of the family.

Kay x

JaneRA
Member

Re: You and Yours - End of Life Care

Wonderful. I have read some of Julia Darling's poems but not this one.

Love poetry...it really helps.

Jane

Jennywren
Member

Re: You and Yours - End of Life Care

Thank you Jane and Belinda, I'm really enjoying these.

I still have Julia Darling's 'Indelible, miraculous' in front of me on my desk, Belinda.

Jenny
x

mrsblue
Member

Re: You and Yours - End of Life Care

Thanks, Jane and Belinda for sharing those poems, wonderfully expressed - the Julia Darling one was new to me, it resonates. (No poetry at my funeral, please, though.)

belinda
Member

Re: You and Yours - End of Life Care

Hi Jane, I must search out more Mary Oliver. Have you read any of Julia Darling's poems? We exchanged a few emails..I wish I'd kept them! My favourite poem of Julia's is this one, Too Heavy.

Too Heavy.

Dear Doctor,
I am writing to complain about these words
you have given me, that I carry in my bag
lymphatic, nodal, progressive, metastatic

They must be made of lead, I haul them everywhere
I've cricked my neck, I'm bent
with the weight of them
palliative, metabolic, recurrent

And when I get them out and put them on the table
they tick like bombs and overpower my own
sweet tasting words
orange, bus, coffee, June

I've been leaving them
crumpled up in pedal bins
where they fester and complain.
diamorphine, biopsy, inflammatory

And then you say
Where are your words Mrs Patient?
What have you done with your words?

Or worse, you give me that dewy look
Poor Mrs Patient has lost all her words, but shush,
don't upset her. I've got spares in the files.
Thank god for files.

So I was wondering,
Dear Doctor, if I could have
a locker,
my own locker
with a key.
I could collect them
one at a time,
and lay them on a plate
morphine-based, diagnostically,

with a garnish of
Lollypop, monkey, lip.

JaneRA
Member

Re: You and Yours - End of Life Care

Liked the Mary Oliver poem Belinda. Here's another wriitten by her which I like:

In Blackwater Woods

Every year
Everything
I have ever learned
in my lifetime
leads back to this: the fires
and the black river of loss
whose other side
is salvation, whose meaning
none of us will ever know.
To live in this world
you must be able
to do three things:
to love what is mortal:
to hold it
against your bones knowing
your own life depends on it;
and when the time comes to let it go,
to let it go.

Mary Oliver.

belinda
Member

Re: You and Yours - End of Life Care

Hi Ostrich..it's ok ..it's good to hear all opinions on these things.. 🙂 ..Belinda..x

debsincornwall
Member

Re: You and Yours - End of Life Care

Me too Jane sad and hissed off!
I have written at the back of my diary things that I would like to happen music choices letters to my two daughters. I did it this year when I was told it was .hit or bust time. I said to Ian yesterday in the hospital I think I have left thing long enough and should tie all loose ends. He usually says there is plenty of time for all that, but the truth for him has sunk in. After my port was installed I went to see consultant who did my first op he has moved to Cornwall we had a good chat about my infiltrations and he was very honest and said no one can say how much more time I have due to this latest development so I will get on with things.

Love Debsxxx

JaneRA
Member

Re: You and Yours - End of Life Care

Like Penny I've thought of leaving a speech to be read at my funeral. I once went to memorial service where we all watched a video recording of the deceased talking to us...that was quite radical in the 1990s...good on you Bob....though it was so typically self centred of you!

I do have it in mind to leave a message for these boards for after I'm dead. Dunno whether I actually will but do intend to leave letters for important people in my life...I really treasure one left for me by a friend who died 9 years ago.

I do want to ensure that my funeral can't be an impersonal one with the duty vicar...thats why I'll involve the Humanists before I die. I want people to be sad as well as to smile. I'm pretty sad about dying before I should.

Jane

ostrich
Member

Re: You and Yours - End of Life Care

Deirdrie and Belinda,

Re-reading my post (written in the wee small hours after a glass too many and having spent the evening with my best friend who had BC 18 months ago where we laughed and cried about BC, our hubbies, children etc) and now reading your posts I realise that I posted in haste (repent at leisure!). Sitting here now considering it I think planning and personalising your funeral is something I would do as I too have been to impersonal funerals where the name of the deceased is inserted in a tried and tested service formula. Taking back my earlier post, xxx

belinda
Member

Re: You and Yours - End of Life Care

Yes I'm the same as Deirdre, I made some choices re my funeral when I was first diagnosed with mets, so I didn't leave things until I was too poorly, now, mostly, I can concentrate on life!
Unfortunately once diagnosed with secondaries you can't help but have to deal with issues such as end of life care etc. I've lived with mets for 5 years and I'm hopeful for more years so I'm not over occupied with funerals...this thread has been a good place to discuss such things though..I think a lot of us 'hold back' on these forums for fear of upsetting others.
Belinda...x

Deirdre
Member

Re: You and Yours - End of Life Care

Ostrich, I respect your view, but mine is different. I think an important part of my learning to live with secondaries was facing up to the possibilities, and not ignoring them. So planning the funeral was an important part of my learning to live with the secondaries diagnosis. I derived great pleasure and comfort from it - revisiting again all the readings and poems that I love, remembering all the wonderful music that has meant something to me in life.

And once I had done this, I could move on. I certainly do live life to the full. Planning my funeral hasn't stopped any of that.

I have been to funerals that are entirely impersonal and seem to be "off the shelf". My aunty's was like that, and the family fretted for a long time that we never found the wishes that she said she would leave us. I'd like to think that at my funeral people will smile, knowing that some reading or another was so typical of me. That maybe they will feel that they are with me for a little bit longer, and will go away with lighter, gladder hearts because I had thought about what I wanted them to take away from the event.

Yes, there is still room for my husband, my kids, my family and my friends to make a contribution. They can make choices from what I have suggested. And they can choose to add their own. But I like to think there will be something there that conveys my love for all the people who will be there too.

Deirdre

superpen
Member

Re: You and Yours - End of Life Care

My fantastic mother died 12 years ago at the age of 62, as a result of her bc metastasising to her liver.
We managed to keep her at home until the last 24 hours, when an ambulance came and took her to the end of our street where the St. John & St Elizabeth hospice is in central London. They were wonderful. At this point my mum was mostly asleep, she would wake up, take a sip of water, we would tell each other that we loved each other, and then she would go straight back to sleep. She seemed much more comfortable in the hospice, and as soon as a private room became available they moved her into it.
I had to go home to be with my babies at 6.30pm, but left my Dad and brother with her. At 8.15pm my Dad called to say that she had passed. He said that she had been very restless 15 minutes earlier, the nurse had given her an injection which was probably morphine and it helped to calm her down, and probably tipped her over the edge. I was sad that I was not there for her, but happy that she was not suffering anymore. When I saw her later she looked very peaceful.

I pray that my end will be similar, as it was reasonably dignified. I don't even think that she was in too much pain, not that she was ever one to complain - unlike me! She was even telling me about her childhood 4 days earlier, although she was obviously going downhill fast.

I have considered writing a speech to be read out at my funeral by my best friend. To really thank the people who were there for me( and maybe shout out the ones who were a disappointment - tee hee!) and really tell it like it is. I have always loved to shock- this would be my last hurrah! Hopefully it is not for a while yet, but you just don't know with these damn secondaries.

Penny

lyndu
Member

Re: You and Yours - End of Life Care

I think the best I can do for my survivors is make sure they know that the funeral is for them, not for me, and if they don't want one, it's up to them.
I've suggested the bodily bits can go to research, but if the labs don't want me, they're free to choose cremation or burial, whichever they want, and a service or not, whatever they want. As I've said to my partner - I won't be there, and I'm not coming back to review the performance.
There's several bits of music where I've said "I'll have that at my funeral" - but fortunately he knows I'm joking, because now the list would take about five days non-stop. And yes - I really like the idea of the "A" lapel pin.

Lyn

lol2705
Member

Re: You and Yours - End of Life Care

I understand what you are saying ostrich, I was so affected by my sisters death well not so much the death being with her at the end but i mean loosing her that every little headache or pain in the side any ailment i had i thought to be cancer and that i was going to die and leave my family. I took panic attacks and boy were they frightening. I would spend most of my time planning my funeral hearing songs that i would like to be played oh absolutely everything. I even paid privately to go through a body scanner and still i couldn't settle 15 years this went on until i changed GP and he said that i was receiveing all the wrong treatment he sent me to a psychologist who beleive me saved my life so to speak she helped me with cognative thinking and we worked so hard together. Unfortunately for my husband it had been 2 much and though he had stuck by me for all these years it was too late and he left before i got to the final hurdal. I had been so ill much more than i was thought. I had been going through an early menopause too at 38 so all of these things had been adding up. So now with this clear head and positive thinking i couldn't beleive how much of my life i had been missing i should have been living it not planning the end of it. i have been living life but have found it a stuggle with out my husband but i have 3 lovely boys who still live with me. Now funny enough i am waiting for my diagnosis but i feel quite calm not the person before who would have had herself dead and berried i will come to that when the time is right don't get me wrong my family know what i want. I think that it is important because none of us know what is infront of us. My friend was dying of Malignant Melanoma and her husband wanted to speak about what he should do and she refused to admit that she was dying and kept telling him that she wasn't going to die and would be home soon when she was better. They had 3 sons 9,11 & 13 he found it so hard knowing if he did things the way that she would have wanted and i know that he still cuts himself up about doing the right thing. Mabye if we spoke about it before an illness it would be easier but for some people it is such a taboo subject.. There is only one certainty in life and that is that we will all die. How each of us chooses to do things is our own private thoughts and i am sure that nobody would be offended be others thoughts at least i hope not as we can all make our own choices and have our own views it is good to read what other people think. Kind wishes to all xx

belinda
Member

Re: You and Yours - End of Life Care

Ah I love the sounds of silence song Maroke. I quite like this poem, wondering if I should leave a copy of it about after I've gone..it's by Mary Oliver.

The Summer Day.

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
With your one wild and precious life?

Maroke
Member

Re: You and Yours - End of Life Care

Hi,

I haven't planned my funeral yet, as I am planning to be around for a good few years yet. Even though my oncologist said I should leave everything in order as my time here will be short. I did write a letter to my sister (just in case) telling her I want a cremation and i don't want to be scattered, my kids will need a place where they can "visit" me. Their Nana was scattered and they can't cope with that. Further I wrote what music I wanted playing...Sound of silence, Happy endings from Mika and most importantly...Always look on the bright side of life! Because that song sums me up the best. Otherwise she can decide what will happen, I know she will hurt the most when I'm gone and I hope it will help her to cope better. I keep being amazed at the strength of all the ladies who post here. You're all my heroes. And yes, I do know we all have days we don't cope at all, I have them too, but I can't thank you all enough for the strenth and courage I find here

love Maroke

ostrich
Member

Re: You and Yours - End of Life Care

Hi,

These are my personal thoughts (from someone with gd1/2 and 1/9 lymph nodes affected so only a small scale cancer) and so I am no way near planning my funeral but, having considered deatth (albeit mometarily for someone in my position) I have to say that, were I right now thrust into the position that so many of you face I would not choose to plan my funeral in minutiae. I am a Christian and, believe it or not, my profession has reinforced my belief. (try meeting someone for the first time when they are already gone and you realise how much the soul is a part of life because without it, ie after death, there is nothing but an empty shell) I think that whether you choose to believe that in the moment of passing you head to God, or not, the end of the physical life is the end of the spiritual life - its in the eyes, room, everything. To spend your "life" working out what you want to happen after your "death" seems a pointless waste of time. You will either be in heaven, hell or cease to be, end of.

Your death is for your family to deal with and, whilst I appreciate that it may be easier for some families to not have to decide after your death and for others easier to have it spelt out exactly what you wanted, surely the aim of life is to live. Spell out the things that you really dont want (God, cremation) and that you really do (God, cremation...) but other than that concentrate on living.

As someone somewhere, probably I think on this site said, we are all born with an expriy date stamped on our ars*s but some of us know that it will be sooner or have a better idea than others. (Afraid the hit by a bus analogy has to rear its head again) I find myself in reading this thread thinking - would my 10 year old be better off me planning my death than me just dropping dead?)

As someone without any further dx as going through chemo for primary at this time I may be talking out of my ar*e and come back here in (hopefully) years to come and eat humble pie I apologise if I have upset anyone. But, as someone going through BC, whether it be once (hopefully) or not and either way having to face up to her own mortality at 39, I like to think I have not upset anyone and they will understand the meaning in what I say.

O, xx

Liverbird
Member

Re: You and Yours - End of Life Care

This thread has been really interesting to follow. I dont normally come on the secondaries forum.
After seeing my mum die in a hospice and the wonderful care she had i would definately opt for that.I don't want to be conscious though and in pain.
Jacksy so refreshing to see your post and you say things just how i feel too.
Having lived most of my life believing in an after life and living for God I definately believe I will be with him in eternity.
As someone once said at a funeral i went too 'this life is short but eternity is long'.There are so many questions i want to ask God, and so many things i want to tell him are the pits, so quite looking forward to it.

At the hospice mum died in they had lots of flowers so although she didnt die in the garden she died surrounded by beautiful flowers and a vase of fresia by her bedside.
I don't want my family to be there as its too distressing for them.
I have often thought of having some sort of service which i can attend if i am terminally ill and know only have weeks to live.This would be a service with my favourite hymns poems in and all the people i value attending. Then when i die i would just have a burial with family and close friends.

Recently i have been to funerals where they have the burial first then a thanksgiving service for peoples lives.

Rx

horace
Member

Re: You and Yours - End of Life Care

I wrote to the Humanist society and they sent me a selection of their funeral rites as my late husband was a committed atheist.We had no formal officiator and were able to do it all ourselves with friends doing the readings and one friend who volunteered to lead.We had 3 poems,music and a 'form of words'sent by the HS.It was very moving.I have a sort of imperfect faith myself,almost in spite of myself,so will go via the traditional route myself,however the HS are very helpful when approached.
Valx

JaneRA
Member

Re: You and Yours - End of Life Care

Loved your post blondie. I must get an A lapel badge too. What horrors to be wrong and find oneself behind the pearly gates with everyone being nice to each other...or worse in a furnace with a load of goats.

I know what you mean about the funeral too. I used to think I'd want to plan it to the last detail but now I think I'll do a broader brush and may not be so detailed..as you say funerals are for the living. I do want someone from the Humanist Assiciation to officiate at my funeral and so I am planning to meet them before departure...a friend of mine did this before she died and her funeral felt just right for her.

Jane

KatherineM
Member

Re: You and Yours - End of Life Care

yes same from me, i really appreciate everyones contribution here, i am always amazed at this website how it comes through on these difficult topics and everyone shares their thoughts so eloquently.

for me i really struggled with the funeral thing- started making really specific plans for everything and exactly how it would be and only really recently (and posts above help) I just thought stop! So I have left a note with my three favourite hyms, instructions to my OH not to pay the choir to sing, asked for friend to do a reading and my OH to say something, and asked for a cremation to be followed by scattering, and I now realise thats enough, I dont have to plan out everything , I have actually given them quite a bit to work with. It is funny how we can understand death, but I too expect to be at my funeral and of course i wont be.....

Jacquie - do like the idea of a garden, the hospice has a lovely garden but i am not sure what they would say, there is probably some health and safety thing that wouldn't make it practical but it seems a good idea.

I am going to scroll back and look for ostrichs comments.

cathyx

Jacksy
Member

Re: You and Yours - End of Life Care

Hello everyone,
Still finding this thread so valuable....
Thanks Ostrich for the info about the police - that's not something you would know and could make things a lot more difficult for the family.
I do have faith - I'm a Christian - and find it mostly a big help and source of strength. I feel quite okay about where I'm going after I die as I feel I know God really well after spending decades living with him 'alongside' me. Like others, it's the bit before that that's the worry.
I had a flash of inspiration in the summer and realised I wanted to die in a garden! That's okay as long as it's not the middle of winter! I'd really prefer to steer clear of hospitals, but not sure between hospice and home. I loved the idea of being able to hear the children doing music practice and slamming doors (and arguing!), but I just don't know how it would be for them in the house afterwards. I could imagine my youngest being too scared to go upstairs on her own, etc.
I've talked to my OH quite a bit about funerals, and just can't get it into my head that I won't be there, or be able to hear all about it afterwards.... We've decided I'll leave a few details of songs/readings etc I would like included, but basically I'll have to let them decide, depending on where everyone's at when I go, and what they need it to be like.
Thank you everyone, so much for your contributions
love Jacquie x

belinda
Member

Re: You and Yours - End of Life Care

Yes I agree Blondie, my Mum's funeral was left entirely up to us as she was only diagnosed with ovarian cancer days before she died. Planning and choosing hymns, the coffin etc kept us all busy and occupied and that helped..I think it's often said people are ok until after the funeral and that was true for me, I so wanted the day to go well if that makes sense...even the weather was perfect, we had a beautiful Spring day. I've always been a bit of a control freak so letting go and letting others decide after I've gone is indeed a liberating thought.

blondie
Member

Re: You and Yours - End of Life Care

I take great comfort in the writings of Richard Dawkins, it is so great to find someone who thinks as I do but who can construct such clever and wonderfully logical arguments for why things are the way they are. I am going to ensure that I am dispatched with my 'A' lapel pin (stands for Athiest and can be purchased from his web site) so that there is no mistaking my beliefs and I don't slip past those pearly gates by mistake!

I used to spend time mentally planning my funeral, I'd hear a piece of music or hear a poem and thing 'I must remember that and fit that into my funeral proceedings'. I think it was the lecturer in me - having to plan that final plenary, complete with handouts. I don't feel the need now. My funeral will be for those who are left to remember me in their way (if they choose to do so) and I no longer consider it necessary or important to dictate the proceedings or tell them what to think or say about me. I now accept that I won't be there and what is said won't matter to me, it will be for them and so it should be their funeral for me and not mine to plan. Actually it is quite a liberating place to be.

Blondie

Deirdre
Member

Re: You and Yours - End of Life Care

I'm not going to rattle on about faith here. But I am the eternal cynic, needs proof of everything and argue with everybody. And I like to think I am reasonably sane and intelligent. Enough for you to believe that I would have dismissed all thought of there being a God. But I haven't. And my faith means a lot to me.

Onto things more practical. I posted my end of life wishes (where I want to die, what I want for a funeral, etc etc) on my blog and then sent the link to everybody I knew. That way I knew that at least somebody would be able to put their hand on it when they need to and say "this is how she wanted it to be". I took a lot of ideas from Kate's, I admit. I found it really therapeutic to do it.

Deirdre

Jennywren
Member

Re: You and Yours - End of Life Care

Faith is obviously such a personal quest and for me personally, I do not share in a Christian faith as such. We could have many deep and meaningful philosophical discussions here and would doubtless find that we all share elements of faith and humanity - be they under different guises. I often wish I did have a faith and I do find I consider these questions far more intently now than in the past (I even listen to the morning service on the radio - so not me!). I feel like you do Jane and can't get to grips with what will happen to the emotional self and also try to remember that nearly 49 years ago I wasn't here and at some time hence I won't be here again. It didn't hurt then and won't hurt in the future. I used to spend a lot of time when I was a child contemplating 'nothing' and the universe (lying and staring at a summer sky) and sometimes I think children have quite a grip on life, the universe and everything, and that this is a sense that becomes more distant with age.

Just my personal ramblings...

Jenny
x

Belinda48
Member

Re: You and Yours - End of Life Care

Hi like many others I have not been sure to join this thread. I thought I would probably like to die in a hospice as I didn't want my family to have memories that might torture them, I mentioned this to my OH (who by the way doesn't talk about my illness) his thoughts were that we would convert the dining room into a bedroom for me, I wasn't sure if this would be a good idea, I didn't want them to think Mum died here and he stated that maybe they would not want to stay in this house without me anyway so I shouldn't worry which was a big surprise to me. I have also discussed my funeral with my daughter as I am not sure want I want as I do not like dark places and being enclosed and the thought of a cremation isn't great either, so I said would she mind if they made that choice and I am quite happy for them to make the right decision. I have also bought a big garden pot so if they decided to cremate me I would like my ashes put there so if the family moves I can go with them.

Thank you all for sharing your thoughts it certainly has made me think.

Beli x

belinda
Member

Re: You and Yours - End of Life Care

Jane yes I believe it's true the dying need to distant themselves in preperation for death. A couple of friends and my Mum too spent a lot of the last couple of days of their life with their eyes shut..a friend even ate with her eyes shut..I have now read this is quite normal and natural. Before this Mum had said she was frightened of closing her eyes as she felt herself drifting away, she actually died with her eyes open, I found that distressing at the time. I'm comforted by the fact that my family will cope when there's no ME ..they will miss me but I know they will support each other. Not that my husband needs my 'permission' (!) but I have said to him I hope he finds someone else to share his life with, have also mentioned this to my daughter and my sister just so they know these are my wishes. I couldn't say this to him until just recently. x

polly495
Member

Re: You and Yours - End of Life Care

I read this thread last night and have been feeling very weepy since. Don't get me wrong I find it so helpful to read such an honest and frank discussion. Some of the stories are so beautiful.

For me too religion does not play a part in my life.

I think I am just scared because I'm not sure how or when to prepare for my death. The writing of dying wishes has been mentioned, where do you do this? Is it part of a will or something else? I have made a will but I think that only included financial matters and guardianship of my children. I feel I need to make it clear where I wish to die and I'm worried about being resussitated when I should be left. I would like to die at the hospice but do they always have space for you? My mets were diagnosed last March, I know my husband wants me to believe in a future but how can I know if this is realistic?

Also, I wish I had known about the hearing being the last thing to go. I sat quietly with my wonderful Dad when he was dying of cancer 9 years ago. I don't think he knew I was there even though I was the only one of the 5 kids staying at the house with him and mum. When my brother and sister came to see him he wanted to hold their hands, maybe he could hear them but I was so frightened of irritating him.

Kate, you are an inspiration, your braveness and cheeriness amazes me. Is your blog private or could i read it? If so how do I find it?

Thanks everyone x

JaneRA
Member

Re: You and Yours - End of Life Care

Like Belinda no faith but I'm really glad I don't have...been reading a wonderful book edited by Christopher Hitchings recently called the Portable Atheist...stuffed full with extracts from a huge range of authorarguing the atheist case. I find it
profound.

As I contemplate my death my life long (since 13) passionate atheism is a source of great meaning about my life and life in general. At a personal emotional level I struggle with the concept that death will mean always and utterly the end of me...our brains are biologically wired to give us such a sense of self importance in the world..and somehow I think I have to lose that. When I struggle with the concept of 'no Jane' (and I do) I try to remember that I don't worry about where I was before I was born so why worry about where I'll be after my death..in other words I won't be.

This has been a great thread. I still wish there were assisted suicide in this country so that at the right moment I could just say...cheers everyone and goodbye...no messing...apart from the bowels of course.

I do think thre is a tendency, promoted by hopsice movment to over glamorise and over romanticise the concept of the 'good death'. A bit like the natural childbirth movement. Matt Seaton wriites really movingly about his feelings when his partner Ruth Picardie died of breast cancer.He talked about the estrangement he felt, he talked about the distance the dying person has to travel away from the living..We all die, but I don't think premature deaths from breast cancer are causes of celebration or that there is much ot compensate for the death.

Jane

belinda
Member

Re: You and Yours - End of Life Care

I really wish I had faith..I think I would find it a great comfort but I don't..and guess I won't change now..my onc is a very active member of my local church.
I'm not going to worry about bowels and guess I will be past worrying at that stage. I've made it known I want burial not cremation. I visit my Mum's grave once a week, take fresh flowers, it's a very peaceful place and my local cemetery too. Thanks to all who have contributed to this thread. x

lol2705
Member

Re: You and Yours - End of Life Care

Funny how wind and bowel habits always manage to raise a smile!! Dippykate i have been following your thread from when i first came on the forum and there was a post to say that you were unwell. I didn't like to intrude as so many people seemed to know you but i would log in each day to see how you were. I tried to the archives to see when you had been diagnosed to follow your case but couldn't see it. Somehow i felt drawn to you i assumed that you were young and had a young family. You seem a bit like myself somehow a good caring nurse (nothing like blowing your own trumped eh!! and not of the bowel kind i might add.ha ha) or mabye it was cos you were young i made me think of my sister, i don't know just a connection of some sort. I often think of the people on this site when i go to bed and wished that there had been something like this when my sister was here am sure it would have helped her alot. She liked to sleep with the bible under her pillow and i used to hear her speak to the macmillan nurse about it. We were a family who went to church and i went to sunday school was going to be a sunday school teacher but my nursing weekends put a stop to that. I lost a few of my friends in motorbike or car accidents in my teens and lost some of my faith, when my sister was diagnosed so young i also found it hard to beleive. Well my sister knew this and i she would say to the nurse that i didn't beleive anymore and why would god let this happen, but she said that it was her faith that helped her through so the nurse would read to her. I know that it gave her comfort and you would certainly have given the lady that you read to comfort i am sure of that. Take care. X