I am prompted to write this after a chat with the PALs lady at the Marsden and I spoke about the “where to die” question.
I have always said that I should be shipped off to a hospice when my condition became too distressing to the people in my house to cope with, or when I needed medical care or intervention that couldn’t be given at home. I was quite shocked when she advised me that, if I really wanted to go into a hospice, I should avoid being admitted to hospital at all costs and hang on as long as possible at home.
She said this was because, in her experience, in the event of a shortage of beds at the hospice, patients at home would be given priority over patients in hospital.
I have had many, many chats with this lady, who has worked for over 20 years on the palliative care ward at the Marsden and who has answered so honestly so many questions I have had about dying. This just seemed to be a really simple point for many people who may be considering hospice care that I thought I should perhaps pass it on. It seems a bit morbid to be offering hints and tips on where to die, but it seemed like sensible advice too.
Deirdre
Deirdre
It makes sense doesn’t it? if you have someone whose condition is deteriorating at home and they can’t help at home…a hospice would help them first. I wanted to make contact with a hospice because I was worried that if I wasn’t one of their patients I would be stuck with a local hospital or an expensive private hospital (god forbid).
cathyx
Thanks Deirdre as we need help and advice to live with this disease it is also true we need to share the information on how best to deal with the final stage.
Ian is under strict instructions if I die in the night not to ring 999 for an ambulance, as with a dead body the police have to be informed. He has been told to play some music have a drink and wait until morning to ring doctors who will come and give death cert and then undertaker can come.
Love Debsxxx
I have talked to my hopsice nuse about this and decided that if possible I want to die at home. She says there are some circumstances where I might be rushed to hopsital, but also that if I change my mind about dying at home I could be moved to the hospice.
I have also had lengthy talk with her about an advanced directive which I will get round to writing sometime soon. I’ve got reams of information on this, following recent change in the law but haven’t got round to writing anything yet.I wish there was an assisted dying option avaialble in the UK…this would help to make me feel much less frightenend about the final time.
Jane
Debs i really like that idea, but …won’t we be smelly what with loss of control of bowels and bladder. Sounds trivial maybe, but I would hate my family to be associating me with that at the end.
my bowels have let me down all my bl…dy life if they go at that moment tough! We have Jo Malone candles.
Oh, now I have to rethink things.
My mums main mish was to die in our local Hospice. We found that you can be part of the hospice at a much earlier stage by going as a day patient. The day centre opened Mon - Fri and I noticed they grouped the patients mostly by age range. My mum went as a day patient once a week for nearly two years. This meant that she got to know all the staff and they got to know her. They had massages from the holistic trained staff every week. As the time got nearer they agreed along with the local gp that they would be her main carer. They told mum that no mater what happened she would go only to them. When she felt that her quality of life had reduced dramatically we rang them and they came and met us all at home. Agreed that her time was probably near and the next day was admitted. They stressed that if she improved she could come home or may stay there until she died. Unfortunately she did not improve to come home but died three weeks later. As she got weaker I kept asking “are you happy?” Is this where you want to be?" All she said and repeated it many times “it’s perfect". It was as well, I could not think of a better place for her or us; as the support was amazing. They turned a very traumatic experience into one of peace & calm.
I believe that a hospice is not about dying but about supporting a patient and helping them obtaining quality of life for as long as possible. And as a carer along with my dad we had so much support, along with my young boys, we could not wish for anything more.
I remember when Jpoet died in the jewish tradition they have people who volunteer to see you through death and dying (i wish I could remember what they were called), and I think (maybe wrong) that one of their functions is to come and lay you out, which would deal with all that in your own home and leave you in perfect white sheets.
Anyway that’s what i would like, something romantic and no messy reality for me.
It depends whether your bowel is full when you die or not. If you haven’t eaten for a while…which could be the case if you were dying… then there wouldn’t be anything in bowels to expel. Sometimes dying people wear incontinence pads anyway.
I think there was a thread on this subject recently which included a discussion of rubber (or similar) sheets.
Jane
Ater my mets dx, my GP referred me to our local hospice – it was reassuring, at that terrifying and painful time, to learn how much support would be available for me and my partner, but it was a real “milestone” for me to walk through that door. My partner’s sister has said she’ll be here to help her look after me when I become too ill to look after myself – I’m so grateful to her for that. But I’m not sure where I want to die – I love our home, and would feel safer and more secure here, but, like others have said, I worry that it would leave an insurmountably sad atmosphere in our home for my partner afterwards. Still need to think about all this, but definitely don’t want to die in hospital.
Marilyn x
I too have been going to my local day hospice for about a year and had the same thing in mind - that it would be harder for them to turn me away if they knew me! And yes, I have been surprised that my hospice is full of life. I really think it will be the best place for me.
My dad died at home. He wanted it that way. Although he had cancer he worked right up till the Friday before he died (on the Tuesday). He died at about 5pm and the doctor came out and did the death certificate, but we kept his body in the house till the morning. It seemed sort of right that we didn’t eject him in a hurry - that he had a final night in his own bed.
Another tip (and this one is a bit yucky, so look away now if you are of a nervous disposition). My mum left the heater on for him in the bedroom. When the undertaker came the next morning he advised us all to go out for a walk. It seems incredibly insensitive now, but also funny, that he said my father was a bit like a bannana that has gone past its time and that they needed a bit of time to “deal” with things. I guess he was talking about the famous “fluids” - but I suspect perhaps decomposition may have started in view of the temperature in the room.
Hmmm… not very pleasant thoughts. But if we are being really practical then tell your OH or whoever is looking after you at home to leave the heating off if they are going to keep your dead body in the house overnight.
You know, thinking about this, I do wonder whether there is some sort of support for people who will be looking after those who die at home. I guess MacMillans may do it nowadays. Maybe there is a leaflet - there’s one for everything else. My mum got no advice from anybody about how to deal with a death at home.
Deirdre
Hi Deirdre
Both Macmillan and Marie Curie have booklets and information that you might find useful for those caring for people with a terminal diagnoses.
Best Wishes
Annabel
I get the feeling there is support for carers at home…certainly in my area. I have only visited the hospice once(can’t bear communal art therapy activities at the best of times) but my hospice nurse rings weekly and would visit weekly if I wanted her to. She is always keen to talk to my partner but she (partner) alwasy tries to avoid her…later on I think they will be really helpful. My hospice nurse has just written a dissertation on place of death and is very supportive of people who want to die at home. She liaises regularly with my GP too…it feels like a good service…though I wonder when things get bad where the cracks will emerge…
Good advice on the heating Deirdre.
Jane
I definately want to be at home, and if that means not eating solids for a while so be it - hopefullly I won’t fancy it, on the other hand some people seem to pick up and become quite animated just before they die.
Will certainly remember to pass on the heating tip.
I suppose my experience of hospitals is largely to do with feelings of frustration and lonliness particularly at night time - i would hate to be dying alone, in a strange place, and sorry i don’t rally understand why you want to meet others at a hospice regularly. Not meaning to criticise but not sure i would find it supportive, i think given the inevitable consequences i might find it more frightening. but then i am a weed.
Celeste I don’t think you (and I) are in the minority and I don’t think we are ‘weeds’ my hospice is literally at the bottom of my street but I’ve never visited…There’s also a local secondary group but it’s not for me…did try it for a while but I’m not into group therapies etc. I guess I will end up at the hospice or at the hospital but figure I will be very ill at that point and won’t be bothered where I am. The cancer ward at my hospital are very good with morphine, pain relief etc so hospice or hospital is fine.
I don’t want to die at home in case it makes it too sad for my husband to carry on living there. I must admit I don’t give my death that much thought. When it happens, it happens, until then I try and live as normal a life as is possible, albeit with regular tumour markers and hospital visits to pick up my chemo tablets. I’m not in denial, I’ve lost too many friends I’ve met through this board and at my hospital. The family know I want a buriel but I’ll leave all other arrangements up to them. My Mum died suddenly last year and it was all the organising we had to do which helped us at the time.
Belinda…x
thanks belinda, - but i cannot even make up my mind about burial or cremation - i rather thought i wouldn’t have either, and if it’s all the same i’d rather pass on the whole dying thing altogether.
I have accepted that i will never be the same, but i havn’t accepted that i am dying, because in the scheme of things, i am quite well for someone with secondary cancer, (says she completely knackered, in pain, and having a major hot flush!).
I have been looking into leaving my body to medical science.I haven’t really done anything beneficial with my life and was thinking that I could after I’ve gone.Then instead of having a funeral,have a big party for all my friends and family to celebrate my life.
Alli x
I like the sound of your party plans Alli. I tried to make my Mum’s funeral a celebration of her life…we even had the most perfect sunny day. I drive past my local hospice all the time, have to as I live in a one way street! I look on it as I used to the ‘big’ school. Somewhere I don’t want to go to but know one day I probably will have to.
Belinda…x
I have always hated fireworks got burnt when I was 4 a rocket landed on my knee. When chatting to my daughters about my ashes and what to do with them they wanted diamonds. I have decided on a big rocket and a BBQ on the surfers beach as the sun sets. Then my rocket can be launched and I can go off into space above the Atlantic.
Love Debsxxx
did a post yesterday but put it in The Guardian thread by mistake.
Debs do you have a link for the company that makes diamonds out of ashes?I read an article about it years ago and love the idea.
Thanks Valx