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You and Yours - End of Life Care

Deirdre
Member

Re: You and Yours - End of Life Care

Kate, your post is not distressing at all. I'd love to think of myself as that 78 year old woman coming across such compassion from a relative stranger. Sometimes I think that in difficult circumstances we find the humanity that we so often overlook in the hustle and bustle of life. And I like to think there really is a connection between us so that I will find some basic human kindness in the hands and hearts of those who care for me.

Now to lower the tone a bit... it seems that bowel movements feature quite a lot at life's important junctures. I know (from my mum) that I evacuated my bowels when I was born, and also when I was giving birth to each of my three kids. I now know I will probably do the same when I die. Isn't it a good thing that we hold it in for other significant moments, like weddings and so on. Can you imagine what life would be like if we couldn't?

Deirdre

dippykate
Member

Re: You and Yours - End of Life Care

Lol2705 - your post made me cry as it was so beautiful and I can imagine my sister being the same with me.
when I was nursing on the warsd, I always felt almost priviledged to be there when someone died as I hated the idea of people dying alone but would always respect a relative's wishes if they wished to be alone or have anurse for company.
My experience has been that some people 'choose' to die alone as so often, the family would be staying there for hours on end with their relative and the minute they popped out to the loo, the relative died. This was also my experience of my friend's death in 2006.
I spent about 20 minutes alone with her about 3 hours before she died as her family were talking to her doctors outside, leaving me alone with her. Each time I stopped talking, her breathing would slow and seem to stop and when i talked to her and held her hand or touched her, her breathing would speed up and I got the impression she was telling me to go away so she could die alone as she seemed almost irritated when she realised I was still there and so couldn't die alone
The secretions I meant was the 'death rattle' sort as that was so noiceably different due to these injections when my father died in 1997 and he was literally drowning and when my friend died. As my lung secondaries are so widespread and on a bad day i can do a passable death rattle anyway walking up the stairs, I really hope they can do something to dry these up when my time comes.
In my experience, people often do empty their bowels a few hours before they die or at the time of death. There's little you can do about it but it often happens in labour too so it is a natural function but due to a different mechanism.
Both sides of my family have nursed relatives at home and talking to them, I believe in our situation with twins of 11 and an 8 yr old I do not want to die at home. My daughter can see me from her bedroom and I don't want to die in our bed for my husband's sake and I can't see how we can have a single bed anywhere in our house as it is too small. The children are expecting me to die in the hospice and seem to have plans about what they are going to do there when I die.
My father died at home. He died 16 hours after I left him to come back 140 miles to my house. He was due to go to the hospice that morning but choked before the hospice ambulance arrived. Apparently, he choked so a member of the family phoned 999 so a normal ambulance arrived and they tried to resuscitate him which felt so wromg and distressed everybody present immensely. I'm so glad I wasn't there. When my hubby and I arrived about 5 hours later, there were all sorts of secretions all over the walls and carpets which my hubby cleaned up for me but I found so distressing. That night, I had to sleep in that bed he died in as there was no other place for me and the twins who were 3 months old at the time.
Another thought I had about hearing being the last sense to go was in tha summer I'd been in the hospice beside a 78 yr old lady who just wanted to die. Nobody visited her there but we had some very interesting discussions of which I'm truly glad we had that time together. I left the hospice but was then admitted to the hospital as I became jaundiced. I was shocked when she arrived next to me a few days later after being in the high dependency unit with a chest infection and with her family buzzing around in the day. The night before I went home she was really distressed and I remembered that she loved a certain passage from the Bible so I found it and read it to her and talked to her and she was much more peaceful after that so I felt I had helped her and she seemed calmer when I was reading from the Bible than when I was just talking to her.
Sorry, this is probably a distressing post to read but I do feel we should be able to discuss as Deirdre said a very basic human experience.
Thank you to everybody who has contributed as it has made me think again whether I have written my dying wishes and my after death wishes correctly and whether I have consulted my family enough. I feel I have but that was quite a while ago so think I need to rerun it by them. I actually put some of my more general wishes on my blog for comment and consideration and was amazed by the useful responses I got and although some people were shocked by that action, my friends are very important to me and I wanted it known what I wanted on a wide scale as I'm not sure how my family will cope when I die and this seemed a way of telling people what I wanted. It was very distressing when my friend and my dad died as neither had really made it clear what sort of funeral/cremation they wanted and what sort of hymns/music/readings/Bible readings/poems they wanted. With my dad, I can remember my mum and I getting very upset at trying to choose the right colour of the coffin as mydad was a highly opinionated man and we knew what he didn't like but nit what he did like and I didn't want to put that added stress to my family.
Kate

manon
Member

Re: You and Yours - End of Life Care

Hi blondie - I love your attitude!

I don't want to die in hospital but I find it really hard to decide between home and hospice. From being around when my sister in law dies I hate the idea of my family having to hang around in the coffee bar between spending time with me. So much better to be in your own home and have people comfortable in their surroundings.
On the bed thing - you can hire hospital beds for use at home, which makes nursing easier too. On the other hand I want all the professional call I need...

Definitely a decision to defer...

blondie
Member

Re: You and Yours - End of Life Care

And there was I just worrying that I would hang about long enough for my legs to need shaving and those odd little black hairs to appear on my face (that I pluck out) and me too ill to know - the embarrassment! Now I feel that is the least of my worries!!

Blondie

lol2705
Member

Re: You and Yours - End of Life Care

Thank you jennywren and like ostrich if i can be of any help to any body please ask as yes i have sat with many people who have died and also my sister/granny and auntie. The other thing i did was to wash and dress their bodies before the undertaker came as they did not want the normal shroud (i am speaking about my family not the patients that i nursed as we had to put on a hospital shroud before the undertaker came for them). My sister wore a dress and high shoes gee she wouldn't go any where without her shoes, also when she passed she had no hair so we made her wig look as good as we could for her. My elderly aunt and granny wanted to have their nightgowns and bedsocks so that is what they had.

The "death rattle" is scary if you have never experienced it. There is also something called cheyne stoking it is a type of breathing and is also scary if you don't know what it is. It is when you take a breath then it is held for quite a while and you think that breathing has stopped but then another breathe is taken this can go on for quite a while and like i say is quite scary but not if you know that it can happen i am not sure if the macmillan nurses explain it or not. I don't mean to scare anybody but just to let you know that it can happen. If this is too much information please let me know. x

Jennywren
Member

Re: You and Yours - End of Life Care

Noone is intruding in this thread. It is a subject which is relevant to all of us, at certain stages of our lives.

I think that, having secondaries and having known so many women who have since died, I have had a lot of time to think about death whereas many in a 'normal' situation would not have to confront death so often. When the first women I knew died, I was shocked to the core but as time goes on and more of us go, I become more used to the concept. I have somewhat come to terms with so many deaths and hope that this may make it easier for me and my family when it comes to me. There must be many members of the professions (such as lol and ostrich) who have to deal with death on a frequent basis and I find your input on this thread both moving and informative.

Belinda, yes I think the final loss of control over bodily functions will very much depend upon whether or not the patient could eat or drink very much during their final days. The way I read it, 'death rattle' can result from becoming so weak that mucus can build in the throat and fluid in the lungs as the ability to swallow disappears.

Jenny
x

ostrich
Member

Re: You and Yours - End of Life Care

I feel like I am intruding on a very private conversation here and don't normally read threads regarding death/dying of BC.

I just wanted to offer a teeny bit of help if anyone wants it. As a police officer I get the difficult task of dealing with death on a regular basis. I have only been in the job 18 months so I still find it difficult.

I just wanted to say that, in case you weren't aware, if you do pass away at home, ask your family to call your GP to attend and that the ambulance staff (if they are called) are aware of this and let their control room know that the GP is attending, death was expected and the police are not needed. The reason I say this is because where death is expected and the GP is willing and able to certify death then it is left to the family however if this doesn't happen then we as police are asked to attend as its classified as an unexpected death. In what is a traumatic time for the family it is worsened by having a couple of police officers turn up with forms to fill and insisting that the Force undertakers are used (if the police deal then they HAVE to use the Force undertakers which can take hours). Even though we try and be sensitive if the family were expecting the death a police presence is not comforting.

This happened to me once and we were able to leave quickly after helping put the deceased back into bed and by advising our control that death was expected and that the GP was on his way and willing to certify death.

Sadly, and probably what I find most difficult is that I only meet these people after they have gone. I cannot therefore shed any light on dying but I can try to answer any questions about dead bodies. Yes, people often do leak fluids - generally faeces but not always.

I will back out now as I feel I have intruded too much but if you want to ask me anything, please do,

Love to you all, xxx

lol2705
Member

Re: You and Yours - End of Life Care

I am pleased that my comments have moved you i really did feel that i was ranting on. I have so much more that i could say about my sister and her last few days or even just how she was and to be honest i haven't really spoken much about her death to other people and that was 17 years ago it's funny how you can sit and type away but not mabye sit and talk about it i loved her to bits she was my big sister 5 years older than me and we were best friends not just sisters and to have her taken away from me is the wost thing ever i miss her so much and beleive me there is never a day that goes by without me thinking about her and more so now when i am waiting for my own diagnosis! When i took her to the toilet once i was pulling up her PJ bottoms and she gave me a kiss and said that she loved me and that i was her Wind Beneath Her Wings cos i was her hero you know the Bette Middler song well you can imagine how i fee whenever i hear that song but the truth was that she was my hero she never complained or said why me cos she thought that if it wasn't her it would have been somebody else and she would not have wished BC on her worst enemy. She was such a couragous and inspirational person. Oh dear i am sorry i am going on again and i have lost track of this thread sorry. XX

Kay123
Member

Re: You and Yours - End of Life Care

Have been following this thread for some time but haven't felt ready to post, but your posts, Kathryn and lol2705, have really moved me.

I would definitely prefer to die at home in the midst of my family - with them continuing with their lives in the last days of mine. Hospital would be horrendous as far as I am concerned however caring the nurses - I want to be somewhere I feel comfortable mentally as well as physically. My hubby won't discuss it at the moment though and I think is quite scared of the idea of being "responsible" for my care in those last days. I am hoping that when the time comes (hopefully not for some time to come) he will feel well supported and able to cope.

On a slightly different tack, I do a lot of family history research - going back several generations it was the norm for people to die at home and be witnessed by members of their family. Somehow we have lost that contact with death as a very "normal" thing to happen (however sad) and with that loss of contact, we no longer know the details of what "dying" looks like and involves. (So no knowledge of "secretions" etc!). Not sure that that is always helpful - I am usually far more scared of things I don't know/understand than things I do, though obviously being witness to a "difficult" death is also likely to be very distressing and ultimately affect our views on our own deaths.

Having said that, I (like Deidre and some others) am probably more scared of the period leading up to my death - I dread the loss of ability to do the things that I feel make my life worth living.

Kay

KatieP
Member

Re: You and Yours - End of Life Care

Very thought provoking and really interesting to hear of people's differing experiences and what is and isn't talked about. My mum died from breast cancer in hospital and I was with her, Those last days for her were awful, she struggled for breath and was at times very frightened but I remember no reassurrance from the nurses and we just didn't know what to do.Before she slipped into unconsciousness she just wanted my father.
I would prefer to be at home, I listened a while ago to a very moving discussion again on radio 4 about end of life. The woman being interviewed spoke about her husband's death at home in the midst of his family and him being able to hear things like the children's music practise. I would like that sense of continuity and knowing that I had those who matter most to me in this life, my husband and children with me. I had a brief discussion wih my Macmillan nurse and she said that they try to go wih patient choice.
Kathryn

blondie
Member

Re: You and Yours - End of Life Care

Oh lol2705 you have not been ranting on. Your post is one of the most moving I have read on here, your love and care your your sister comes pouring through. I do hope that writing all this down for us has given you some sort of comfort. What you have written will stay with me for a long time.
Blondie

mrsblue
Member

Re: You and Yours - End of Life Care

This is such an important thread... Grateful thanks so much to all who have posted so far - you have helped me, and hopefully many of us. It is good to have the opportunity to discuss realistically without being accused of being "morbid".
I've not yet decided about home v.hospice, if indeed I get that choice. My mother died of lung cancer, to my surprise she chose to die at home, but she had had a dislike of health professionals whereas I usually trust them. Am hoping to visit my local hospice soon.

belinda
Member

Re: You and Yours - End of Life Care

I'm so sorry to hear about your sister's death lol2705..thank you, so much, for sharing your experience with us...x
Yes I was told hearing was the last thing to go, even right up to the end. My Mum saw 'something' in the corner of her room, I remember she said it looked 'interesting' maybe that was the light you mentioned. She too kept her eyes open although I don't think she could see.
Take Care All..x.x.x

lol2705
Member

Re: You and Yours - End of Life Care

I was always the nurse who would sit at the bedside holding a patients hand and gently talking to them if they were distressed. ( these were eldrely people on a geriatric ward) I truley beleive that nobody should die alone. One lady in particular i always remember,i was holding her hand and speaking to her i realy expected that she would have passed away be the time i came on shift next morning. However she was stil "with us" and more alert than i could ever have imagined. When i went accross to speak to her she took hold of my hand and thanked me for sitting with here and speaking to her she said she could recognise my voice from the night before. When you have an anaesthetic the last sense to go is hearing and it is the first to come back so i am sure that in death you can still hear people though cannot answer that is why music and speaking is encouraged with unconsious patients. Sadly this lady died the next day but it always sticks with me that i had made a difference. I passed this onto my auntie when my uncle was lying very ill in hospital we had all been called to say out "farewells" and when i visited his room here was 7 of my relations standing at teh bottom of his bed speaking as if he wasn't there.!! I said that he could probably hear them talking and it would be better if they sat and talked to him they looked at me as if i was mad. I took a seat beside the bed and held his hand speaking to him asking if he could hear me and squeeze my hand or make any facial movement that he could well i got a small smile from him. This changed things for his sons and wife who sat and spoke to him and much better memories of this final few days, as he was able to squeeze their hands and knowing that he could hear them though couldn't reply well you can say things that you want them to hear.
My sister was being nursed at my mam's house and that was where she wanted to die, i would sleep in the same room as her at night as she would always ask where i was but i cared for her during the day also and i had to get rest so the macmillan nurse would come in at night. I always used to hear her asking where i was and when the nurse said that i was sleeping she was reasured that i was in the room with her. (bless her she thought that because i was a nurse that i could make her better). She would wake up in the morning and say Oh i'm still here i wasn't sure if that would be my last night or not. When she did take a turn for the worse she asked if she could go into the hospice a place that she really did not want to go however she said that mabye she would get better in there and it was worth a try. However the doc said that she would not have survived the ambulance journey. She did admit that she was pleased realy as the clinical side of things she did not want. My mam phoned for my granny's and oneof them took my auntie with her) to come and say goodbye to my sister now this caused a row as i realy did not think that it was appropriate for them to be seeing her in her last few hours of life and she really was struggling at this time and i have made it quite clear that should they ever be in that position with me that i only want my imediate family with me. My great aunt who stayed with us when we were children chose not to come through my sistere was her wee girl and she couldn't bear to see her slip into the next life. My sister had mets in lung liver bone and brain but she was young and had a strong heart and fought for every last breath and why wouldn't she her children were only 4 and her daughter was just a week past her 6th birthday.i had sat with elderly people but never any body so young and i must admit it is something that will never leave me her final hour or so. We had heard of people speaking about "the light" and we were trying to encourage her not to fight and to go to the light if she seen it it is such a hard thing to do. She just would not close her eyes and give in. It took me over and hour once she had passed to close here eyes. The only thing that i can say about knowing that you are going to die is that she was able to organise things the way she wanted to have it done and she gave me a ring that she wanted me to have and my mam her necklace these are things that we treasure we spoke about things that we would not have mabye had the courage to ask and i realy do treasure the last few days that i had with her and for us being at my mams house was the best place to be. However it is a personal choice or one that is taken from you depending on how ill you are. Not sure if this helps anybody think i have just been ranting on. Whatever choice is made by any of you who are nearing this stage i really wish you well and my thoughts are with you. Take care. X

belinda
Member

Re: You and Yours - End of Life Care

Just to add ...after reading Jenny's post, my Mum had death rattle and I found it so, so distressing, I never realised it would be so loud. I did lots of 'googling' about it after her death...I then had a word with my onc's doctor who said it would be very unlikely Mum would have been aware of it at the time. Unlike most of you I would quite like a quick and unexpected death and alone..to save my family from memories I now have of my Mum's death..it's still quite recent though so hopefully memories change, fade.

belinda
Member

Re: You and Yours - End of Life Care

Hi, the secretions 'issue'..I think it may depend on what sort of last days you have, my Mum died this Spring, I was with her and there were no 'secretions.' She had stopped eating, drinking a few days before she died. It was in hospital but a side room and we were left alone but knew a nurse was near, they hovered in and out very discretely..we were asked if we wanted to help them wash Mum's body after she died...they said lots of relatives often choose too. A very close friend of mine died in our local hospice, her 2 young children went to say Goodbye to her before she died and the eldest went up to see her after she'd died. I remember she left some drawings there, placed round her Mummy. I can't imagine my body leaving my home either via undertakers or ambulance, I will stick with my hospice plan. A friend of ours found it very difficult to use/visit the room his wife died in, still does 5 years later, that helped me make my decision too. ...x

Jennywren
Member

Re: You and Yours - End of Life Care

Feeling very curious about this excretions issue, I have just googled it and from what I can understand, certain drugs can be given to dry up respiratory secretions in patients who have 'death rattle'. I also read that upon death "Control of bowels or bladder is lost as the muscles relax".

On another point, I hadn't thought about my family's thoughts over where I may or may not die. Indeed, I am quite sure they will not have given it a thought but it is something important that needs to be discussed with them. I don't want big bedside farewells, other than from immediate family but I do think it may be difficult to keep people away. I remember when my son was born, I wanted a day or so to sit at home and get used to him and enjoy him. I asked for no visitors but was ignored and I had one relation greet me with a photo - 'this is me before just as I was about to have a miscarriage'... Lovely!

Jenny
x

lyndu
Member

Re: You and Yours - End of Life Care

For what it's worth, I understand that by the time the end is approaching, most people will have good quality waterproof undersheeting of the un-sweaty kind. So mattresses survive, bedding doesn't.
When my father was ill at home, he had these, and my stepmother was washing about four or more changes of bedding a day. She was too exhausted to move by the time my father picked up an acute viral infection and had to be moved to hospital for the last few days, which is where he died.
Just the physical work involved is what inclines me to a hospice end if I should end up with mets - but not a hospital.

As several of you have said - the final couple of days doesn't worry me so much, from experience I'm fairly confident that if necessary there's usually sufficient morphine to keep you reasonably comfortable. It's the wasteland after losing the capacity to look after myself to a reasonable level and needing detailed care that scares me so witless that I just can't think rationally about it.

Lyn

Lyn

KatherineM
Member

Re: You and Yours - End of Life Care

Yes Jane I think thats it as my grandmother used to volunteer at a hospital and once told me ..but if someone can confirm that it would be helpful as it has set alot of us thinking.

on balance I would rather die at home and my OH is really in favour of it, the hospice has said that they will hope and it is a relief to me that I can fall back on them and go in if thin gs are tough.

I dont want big deathbed farewells from other than my husband and son, how do we keep everyone else back...including aged parents, siblings etc? i now have some insight into what its like to feel terrible and I dont appreciate huge amounts of visitors etc, just want to hold my husbands hand...

Is there a way to tell caring realtives etc to back off?

thanks to all for discussing this so honestly and openly

cathyx

JaneRA
Member

Re: You and Yours - End of Life Care

Just had a chat to my partner about secretions and our bed and dying at home. She's very matter of fact...fine about the bed afterwards. She reckons that at death bowels open...last thing to happen...so obviously bed etc needs some protection. She asked why I hadn't noticed the same thing with dead cats in the road. As Deirdre says isn't it interesting that we don't know these things?

Jane

Deirdre
Member

Re: You and Yours - End of Life Care

I am still thinking about the secretions thing. I seem to remember when my dad died (at home, in his own bed) the undertaker said something about secretions - and they took all the bedding away. Isn't it amazing that we know so much about the most insignficant of things (the size of Peter Andrees willy, The type of dog Obama is getting, the number of people who stand to lose their jobs at Woolworths, why Martina went into the Celebrity jungle - loads and loads of things) but we have no understanding about this most human of all acts.

I chose hospice over home because I think it would be distressing for the kids to see me dying at home and I think the nurses in a hospice would be better able to manage things than my husband. I know my neighbour, who is a nurse, tried so hard to nurse her dying mother at home but in the end her mother went into a hospice where she died comfortably. My only worry is that nobody will come and visit me and I will be on my own when the time comes. Stupid really, and something I am sure that even if I was capable of conscious, rational thought at birth I wouldn't have worried about. It did gladden my heart when the lovely lady in the PALS office at the Marsden (who used to be a nurse working in palliative care) told me that she never, ever let anybody die on their own when she was on duty. She would even sit next to a dying person's bed with her paperwork just so that there would be somebody nearby in those final hours.

This is a great thread and I am so grateful to everybody for their postings.

Deirdre

Marilf
Member

Re: You and Yours - End of Life Care

Hi all

Definitely don't want to die in hospital after hearing about terrible experiences, but not sure whether I want to be at home or in the hospice at the end -- will now think about it, and also talk to my partner about what she wants. Quite early on after my mets dx in 2003, she had a tour of our local hospice's in-patient side, but I've only managed to get myself into the day centre & aromatherapy/etc areas. Like Blondie, I know I need to go further with this, but maybe not just yet . . .

Marilyn x

debsincornwall
Member

Re: You and Yours - End of Life Care

Well, this is one of those threads that you read, have a think and come back to, over and over again. That's what I have done and now I think I am ready to post.
I nursed my mum in Spain, she had the palliative care at home and it was very kind, caring and thorough. I gave her the morphine injections every 4 hours and they called in each morning. On the third day the they upped the morphine mum was ready and she slipped into a coma and died early hours of the morning I missed her last dose as I did not want to be responsible for her last breathe. I had rung my cousin for advice and she said to leave it as she would slip away over the next hour or so. She was right mum did not wake up she just stopped breathing. I have always thought since then that this is the way I would like to go, at home with Ian and my daughters(if they can deal with it). Nice music and the odd chink of a wine glass as they toast and chat about the life we have shared, the good the bad and the mad. Just asked Ian his thoughts and he replied this is my home and he would prefer that I was here.
So thank you for this thread it has helped again with another of those taboo subjects. On a more lighthearted note we have just done our bedroom and spent a fortune on a very comfortable new bed so not sure the secretions will be welcome.

Love Debsxxx

blondie
Member

Re: You and Yours - End of Life Care

Funnily enough I had the conversation with my husband, just after I had posted on this thread, about 'checking myself into the hospice to die' and then i asked my husband what he wanted and he said he would prefer to have me at home! I said, what you said Belinda, what about the memories? the same bed? (I presume you don't chuck it out when someone dies - or is that what the secretions bit is about? - yuck!!). If it hadn't been for this thread I might not have been aware of his wishes in all of this, I am sure I would have asked eventually but all the same it is good to know. More research needed ..... but not now thank you.
Blondie

Mum2Two
Member

Re: You and Yours - End of Life Care

I agree with you Belinda

Like you, I hope needing hospice care is a long way off, but there is NO WAY I want to die in our home, where my children & husband will need to move on with the rest of their lives.

belinda
Member

Re: You and Yours - End of Life Care

Hi all, I've told my husband I don't want to die at home...I don't want to leave the memory/imagery of my death in our house when he has to go forward and live the rest of his life.
I haven't visited my hospice, luckily I've been well so far but I drive past the hospice all the time, it's a short drive from me. I look on it as the 'big' school you know you have to go to one day although you'd rather not...x

Jacksy
Member

Re: You and Yours - End of Life Care

Oh Jenny, that does sound a horrible memory. I hope that sharing it with us has helped relieve it a bit, if you know what I mean.
On the whole I've found this thread reassuring, but we have all experienced the best and worst of nursing care on different days, and know that it is likely to be a bit of a lottery. I think that talking about it and thinking about the options beforehand can help us to have more say and so wrestle back a bit of control, assuming that's possible in the circumstances we will find ourselves in.
Keep talking, this is valuable
love Jacquie
ps - Kate - erm....what sort of secretions are we talking about??!

JaneRA
Member

Re: You and Yours - End of Life Care

Thanks Kate for being so honest...not least becase yours is the hopsice I will die in if I go to a hospice. I have thought though and talked to my hopsice nurse about it that I want to, if I can, die at home. I am a very private person and I don't want to share a room and I don't want to be in instituionalised surroundings. I fancy home rather than D9 any day Jenny.

I'm hoping for massive doses of morphine, unconsiousness and sleep. I hope I will keenly go with the flow and not hang about. I don't want deathbed farewells apart from with my partner.

It is a relief to have this thread and I confess to giggling rather hysterically at the thought of you Kate and Deirdre montiopring south east England's hopsices for screaming patients...perhaps we could set up a consultancy service?

One of the points made in the Radio 4 programme was that palliative care is better for people with cancer than for people dying of other conditions so that I suppose is a relief for us.

Like Deirdre I worry a lot about the bit before the end stage...about the gradual losing of capability. I think I feel that perosnally quite a lot right now because losing my voice has been such a shock to my identity and even though it is partly restored knowing it will never be normal again is really sad. I also feel quite frail from chemo and recongise that in general terms my helath has gone downhill over the last 3/4 months...but I know so many of you are living with that all the time...as much as not talking about dying I reckon we don't talk about illness enough...the illness which comes with cancer, not just the treatments.

Jane

Jennywren
Member

Re: You and Yours - End of Life Care

Hi everyone,

I have never yet found the courage to visit our hospice, for many and varied reasons. However, I have spent time in the palliative care ward in hospital and on the last occasion was witness to the death of a lady in a nearby bed. While I appreciate Nicky's position and knowledge as a palliative care nurse, I have to say that it looked very difficult in a busy hospital for this lady to be given as much dignity and care as I would like when it is my go. More than once I answered her night-time calls for assistance (as I did many times for the ancient lady who would insist on getting out of bed and falling over - I held her up over and over one night and insisted they put sides on her bed the next night - but that is another story...) The dying lady was in the middle of the ward with little privacy bar the curtain round the bed. As her end approached, her family were obviously very distressed and many other visitors were unaware of what was happening and carried on with the usual round of hospital bed chit-chat. Eventually one twelve year old noisy boy was removed from the ward by a relative who clicked what was happening. I found it all very distressing to see and to imagine that that was how my own death would probably be. I also hated the fact that another patient took it upon herself to come and hold my hand (I am not the most touchy feeling person in the world) when she saw my distress. I know I should be grateful for her 'kindness' but she wouldn't leave me alone and made me feel worse so I discharged myself from the hospital within the hour. It was all so impersonal and clinical. I know the nurses and staff did their best, but the whole encounter still fills me with foreboding. When a friend died recently, I was so relieved to discover that she died at home and not on the dreaded D9 ward where she had spent so much time. We both used to be filled with fear that this would happen to us.

I don't particularly discuss my death with my close family, but I am sure I will do when the time is imminent. I know what I want (though not in the fantastic detail that you have managed, Kate) and used to joke with my friend that we would probably end up close to each other (in a woodland burial site) so we could pop round for coffee and a chat! Well I've been and had a chat with here but had to make do without the coffee!

Jenny
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dippykate
Member

Re: You and Yours - End of Life Care

Having spent 2 weeks in the summer and just recently 10 days in the hospice, I am now not scared of the final stage of dying as long as I'm in the hospice. As some of you know 2 weeks ago, my friend's mum died next to me in the ward and the care she and her family were given was superb. They were trying to move her to a sideroom but she went down hill so quickly that there was no time and the family didn't want her moved at that stage. She had bc and it had spread rapidly to her liver and died within 4 weeks of knowing that she had liver spread and was only ill for 2 weeks before she died so it was a big shock to her family that it happened so quickly especially as they knew for how long I've been living with secondaries. She had had some pain in the morning that she died which they set a pump up for and she was comfortable very quickly. Her family were well cared for and the nurses were brilliant with the family. The curtain between our beds obviously does nothing to stop overhearing conversations so that is why I feel so certain about what I've written. I have every confidence that my family/friends will be very well cared for when I reach the end stage.
Like Deirdre says, whenever I'm in the hospice rather than the daycare unit I have spent time looking or more accurately listening out for people screaming in pain. Having spent about 24 days and nights as an inpatient, I have to say that you do occasionally hear people screaming in pain but that is when they are first admitted and they are trying to find the appropriate dose of painkillers and that is done very quickly. The 2 women I have heard screaming in pain both refused the pain killers offered and one even discharged herself in as much pain as when she was admitted!!! I was very confused by that but I suppose you can't force people to take tablets unless they are detained uunder the Mental Health Act.
When I've written about being disturbed by other patients when I've been in the hospice that has usually been due to confusion and do not appear to be in pain or if they are in pain then they are assessed and given pain relief. The medical team are quick to change to a morphine/diamorphine pump to control pain if the patient is unable to swallow tablets or the pain is too severe and in the final stages, patients are given 'drying up secretions' injections which seems more dignified and comfortable for the paitient and people with them.
As Deirdre and Jane say, it is the bit inbetween being able to do things, being comfortable and the unconsciousness due to morphine that is troubling me. It is not troubling me as much now after my near death experience 3 weeks ago, in the hope that something like that happens again when I'm ready to die. It was very scary at the time but once they'd sorted out my breathing with medication, high oxygen and loads of oromorph, I slipped into a very deep sleep and woke up shocked that I was still alive and that I hadn't noticed being sleepy before I went to sleep.If I'm prepared to die then I wouldn't fight so hard to keep on breathing next time. I feel sure it was my determination to keep breathing that saved me this time until they could medically sort me out (although a student nurse made an attempt at killing me a few days later by turning off my oxygen!!!!)
I haven't listened to the programme but will try to but does seem odd not to discuss 'assisted dying'. I know if I reach a certain stage then I want everything done as quickly as possible to speed up my death and from what I've seen of the length of time between people being admitted at end stage and them dying or being absolutely peaceful, they must be doing something to speed death up as I don't remember it being that quick when I was nursing in the wards between 1981 - 1990. Hope that doesn't sound scary to people. I think the way people are looked after, the drugs used etc now means that the patient and their family have a much more dignified, pain and symptom free death.
I know i need to discuss this further with my hospice team as I want to make sure that they have got it down clearly what my dying wishes are and that my hubby is in agreement.
This will sound very odd but I do feel relieved to be able to discuss dying as it is such a taboo subject and just upsets my family and friends too much when I bring the subject up so can discuss it with the hospice nurse and chaplain but not really anyone else so I know I've altered the thread subject but thank you for bringing this subject up - radio 4 is good for its interesting debates but I never seem to have it switched on.
Kate
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Deirdre
Member

Re: You and Yours - End of Life Care

Erm, I know this seems a trifle sad, but I make a point of walking around the corridors of the hospice every time I am there actively seeking out those who are writhing in pain and screaming out. I think my hospice has a policy of keeping doors to rooms open as much as possible. You rarely encounter a closed door. So I think I see a lot of what is going on. And it really heartens me that I have never, over about a six month period of weekly visits, seen anything that looks remotely like my worst nightmare of dying. Now maybe they move the screamers to another place. Or maybe they are all dosed up with morphine. But I do believe that in most cases (although I know there must be some exceptions) the hospice helps people make a dignified exit. And in a lot of cases they are able to maintain some quality of life, right up till the very end, also.

I know through talking to palliative care nurses that sometimes a death might be accelarated through careful use of painkilling drugs - some are powerful respiratory suppresants. But as long as the intention is to relieve pain and not to kill then I think that the hospice is within the law in administering a drug at a level that may be fatal. I've made it clear in my end of life instructions that if I find myself in a hospice and in pain I want as much pain relief as is necessary, even if this hastens my death, but that the primary objective has to be to reduce or control pain rather than to help me die. It's a very subtle difference that I am sure hospice staff are well used to dealing with.

It's other stuff that happens before I get that ill that frightens me - the gradual taking away of physical and mental abilities for example.

Deirdre

JaneRA
Member

Re: You and Yours - End of Life Care

I know Nicky I know...but...it doesn't always work?

I love my hospice nurse and she does instil confidence and I think hopsices do a brilliant job, but it all feels just a little bit too 'nice' for me but then I'm a rager against the dying of the light and like Susan Sontag I don't reckon I'll ever come to terms with my own mortality.

very best wishes to you

Jane

india1
Member

Re: You and Yours - End of Life Care

Whilst I think the issue of assisted dying should not be ignored, I also feel I need to point out that when hospice do a "hard sell' on dignity and symptom control it's because in hospices, or with the right input from palliative care services, people can and do die peacefully, with dignity and with very good symptom control. I know this as I am in the ironic position of being a still practising palliative care nurse. Palliative care cannot take away our own struggles with our mortality but can make a real difference.
Nicky

JaneRA
Member

Re: You and Yours - End of Life Care

Love your post blondie

I've had the oh so gentle hospice lecture on how they don't do assisted dying. Mind you they do a good hard sell on symptom control and dignity...wish I believed them...lovely people but..

Thanks for links Jenny. There was another article in the Guardian recently about a woman who had gone to Switzerland with her husband. Unfortunately the flat that used to be used by Dignitas isn't available now and I think there have been problems finding another one.

Jenny's second link leads to a site with a book review of Swimming in a Sea of Death...a memoir written by David Reiff, Susan Sontag's son. It's about Sontag's death. It's a brilliant book I think...but not for the faint hearted. Sontag struggled with the thought of her own mortality.

Jane

blondie
Member

Re: You and Yours - End of Life Care

I too listened to most of the programme, while painting the inside of my airing cupboard. That fact did make me smile when they said that many people with terminal conditions can continue to lead normal lives - what would they have made of my antics, standing on a stool, twisting into impossible positions while painting?

I wondered why no mention was made of assisted dying and that a 'good death' for me would be to go at a time of my choosing. What is the point of hanging around, in pain, drugged into insensibility with morphine for a few more days?

Interestingly I was sent our local hospice policy on suicide:
"Therefore all patients, their carers and families must be assessed and cared for in such a way as to minimise suicide." You have been warned - if you intend to go into a hospice and have plans to do away with yourself if things get tough - keep it to yourself!

yours morbidly
blondie

horace
Member

Re: You and Yours - End of Life Care

My experiences of seeing death:my mum looked peaceful,just empty
my cousin who died of bc aged 55 looked,if anything,amused.Her daughter and her sister sat with her the night before the funeral and painted her nails and did her hair
my husband's body was the most terrible thing I had ever seen.He died in hospital of complications of MS.
I dont want to think about my own death or dying-it will come when and how it comes and I know that I will 'rage against the dying of the light'.

Jennywren
Member

Re: You and Yours - End of Life Care

I must admit I didn't hear anything 'new' on the programme. Did anyone read this account in the Guardian/Observer a few months ago?

‘I’m going to die on Monday at 6.15pm’
When Marc Weide’s mother was diagnosed with terminal cancer, she chose euthanasia. (http://www.guardian.co.uk/lifeandstyle/2008/aug/23/euthanasia.cancer)

I also found this website: http://www.wellbeingindying.org.uk/index.htm

There is a lot of information and points of view on mortality and dying. I haven't looked at this site before - but will save the link for future reference.

Jenny
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JaneRA
Member

Re: You and Yours - End of Life Care

I'm sure you can listen again on radio 4.

SueCheshire
Member

Re: You and Yours - End of Life Care

What a shame - I missed it.

I put my Dad in the cremator (spelling) at the crem and it was one of the best things I've ever done, knowing that I was with him right to the end. It also helped my Mum alot.

Sue

JaneRA
Member

Re: You and Yours - End of Life Care

The only bodies I have seen have been those of my mum and dad. I sat with both of them quite a long time (more than one visit) and yes it really has helped me get a sense of what a body without a person is like. It's quite a moving and profound experience.

Death is sanitised in the UK and such reluctance to talk about it...as the programme suggested.

Jane

belinda
Member

Re: You and Yours - End of Life Care

I guess there can be a ''good death'' according to those with you at the end and your own version of a ''good death''...not necessarily the same...I felt sad at the fact most people (according to the programme) go through life without ever seeing a dead body..I'm glad I went to visit my Mum twice after she'd died..it helped me. So true in many ways, still, that death is so sanatised here in the UK.

JaneRA
Member

Re: You and Yours - End of Life Care

Yes had a listen myself!

Interesting...though I feel the possibility of a 'good death' is perhaps over exagerrated and romanticised. Strangely I wasn't that taken with the Danish version of a good death...everyone having glasses of wine round your bedside...sounds nice in theory...but if in dying I feel anywhere near as bad as I do on a bad chemo day I'll be too grumpy appreciate the sentiment.

Also amazing how a programme on 'end of life' can ignore the issue of assisted dying.

Jane

belinda
Member

Re: You and Yours - End of Life Care

Thanks Jenny..just had a listen..x

Jennywren
Member

You and Yours - End of Life Care

There is a phone in/discussion on end of life care today at 12 on radio 4. Might be interesting/informative.

Jenny
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