To think we don’t ‘do’ dying and death well in the UK

[FrenchFancie]

I’m currently sitting vigil with my grandmother who at 96 is slowly dying - she’s had a lovely long life but a miserable old age riddled with cancer that has robbed her of her sight, and now led to a broken hip and shoulder. She is settled with pain relief and slowly slipping away but this isn’t the quick clean death she would have wanted.

i don’t want to open a euthanasia debate (really can’t cope with that right now!) but I’ve noticed that many people are very very awkward around death and some have even gone so far as to tell me she might recover (she really won’t). AIBU to think we as a culture don’t handle death well? How do we I prove that? Do other cultures do better or is this unease with death a uniform human experience?

The English customs around death have all but gone and nothing has replaced them. People used to die at home, funerals happened quite quickly and the funeral service for most people was a standard CofE Book of Common Prayer with no eulogy. The whole community would turn out for it and if people couldn't attend they would shut their curtains as a sign of respect. Those who were bereaved would wear black for more than one day. It sounds restrictive and our culture is different now but the customs back then acknowledged that death was real, gave the community a rite to manage the transition and did not expect the deeply bereaved to be over it in a fortnight.

It seems that death is now the last taboo. We don't talk about it, plan for it and we expect people to be silent about their grief. Perhaps the late queen's death will open up a conversation about how to do death, dying and bereavement well.

I think it is the lack of ritual that has made a lot of dealing with death harder for many as people don't know what to do. Having some kind of frame work makes it easier. I've never shied away from it lost a parent young, but no one spoke to me about them properly. Most odd. I think things have improved in that there is far more support out there for children now but generally I agree people flounder and don't know what to say. I think the heavy ritual around the queen's death has made it easier for people to express themselves as it is acceptable (expected??) to express grief about her.
I always think the limbo time between death and funeral is hardest because you loose all sense of time and have no structure to keep you moving forward but then after the funeral life carries on and everyone not immediately affected drifts back to their normal lives and you're left marooned.

Im sending you hugs OP.

You are right that we don’t deal with death well. My granny was diagnosed with a tumour in late June m. She heard the word cancer and I honestly think she decided that was that. My dad was clueless, he stuck his head in the sand and kept saying she looked better after she was rushed to hospital. I got a call to say they were letting her come home and nurses would visit to make her comfortable. Still my dad couldn’t accept it and it was a hard conversation. I asked if they mentioned palliative care and he said yes but wasn’t sure what it was. I had to explain that Granny was coming home to die and he should spend as much time as possible with her. He just didn’t cope. When my children asked if Granny was going to die I was honest and said yes it was sad but the doctors couldn’t make her better. It’s devastating but also a reality you cannot ignore. I don’t want to ignore that she died and not speak about it. It’s only been a few months and my dad thinks my grandad should be ‘better’ but this was his best friend and they never had a day apart. I don’t think he will ever be ‘better’. I call my grandad and I know he misses her because he chats on the phone with me when he used to pass it straight to Granny. Death needs to be acknowledged and worked through at an individual pace because it’s so personal and sometimes traumatic. We don’t do it well.

I am Irish in Scotland and I find the Scottish way more reluctant to deal with death. Wills are a difficult topic, funerals are awkward and everyone is so self contained. I really don't like it, as it just feels alien to me.

I am much more comfortable with the open discussion, having the deceased at home, doing a wake etc. I think it really helped me with the grieving process when my mum died.

If my partner died, I would try my best to do things Irish style. Even if his family didn't engage, my family and friends would come over and do it. I would never do the Scottish thing of just leaving him in a funeral home. It feels so cold and unloving. It would be far too distressing.

My mum died a few years ago. She had stage 5 kidney disease, stage 4 oesophageal cancer, type 1 diabetes, etc etc. my dad and sister are still furious at the NHS and think they should’ve done “more” to keep her alive. 🤷‍♀️

I think that Covid showed us that we had completely lost sight of the age that death becomes natural. We had relative after relative criticising the NHS because their family member, usually way past 80 had not had enough intervention.
I used the term passing to a neighbour when I had to run home while my mum was dying. Other relatives were with her. She had a DNR in place, supported by us all. I'd worked in end of life care. Other relatives worked across social care. But I wasn't ready to say out loud that my Mum was dying. When I phoned her sister, I just said that she had gone. It's what I needed to do.

We do it dreadfully. All of it. From the Will planning…..almost everyone should have a will……to the final days. It’s all dreadful. I work in front line healthcare and I see the worst of this. When faced with a critically unwell loved one(or even some who is old and trying hard to die)….even if this is expected or the patient is 108, the vast majority of the population want me (a hospital dr ) to ‘do everything’ ……presumably so that the antibiotics will cure the UTI and enable them to go back to their nursing home and continue their slow and pitiful decline, in a state of blissful dementia driven ignorance, until 5 sets of antibiotics and multiple hospital stays later they are finally allowed to die. I’ve had many conversations with families with end stage dementia relatives who want CPR and a stay on ITU for their loved one. I totally despair. And if the patient is under 70 but with a life limiting condition you can guarantee that nobody has had an end of life conversation with them.
im 45. I have both POA completed and a will and my family know I want to be buried and where. I’m also an organ donor. I haven’t written my funeral….but I should probably put that on my to do list. Death is part of life. The whole euthanasia conversation bemuses me. We are so far from allowing dying people to die to even start considering letting living people die.

We’ll she’s got through another night, although I don’t know how or why 🤷‍♀️. She is comfortable on a morphine pump but with no other treatment except Hycosine for her secretions.

ive noticed that most of the nursing home staff are ok with the idea of death and dying, but a couple still think she will get well. I have to say that I really don’t want her to - I’m not being callous but her quality of life in the last few months hasn’t been great.

i just find it odd that even care home staff members, who must see a fair share of death, can be so awkward around death and saying goodbye. I used to be a solicitor so Nan has a will, powers of attorney and an advance medical directive in place from years ago - we know her wants and wishes and, now she can no longer communicate, we are following them. I just wish everyone had that level of openness.

My mum died suddenly after a minor op. Her heart just stopped and they couldn't revive her. The shock of the phone call from the hospital was overwhelming but I also remember in the immediate minutes afterwards thinking, 'I know exactly what I have to do.'

My mum was an orphan and had been exceptionally traumatised (as you would be!!) by the early death of her parents. She often said she wanted more for her own family than the horrific trauma she'd been through, so from me being in my 20s, even though she was fit and well, mum and I had good, healthy occasional chats about death and grieving.

I always knew her wishes. She didn't want anyone looking at her body, she wanted us to honour her by living our best lives, she wanted a thanksgiving service rather than a 'funeral' and as she was a Christian, she wanted us to know that she would be ok with Jesus.

She was early 70s when she died and as she was pretty healthy, we never thought we'd lose her as soon as we did but I am so thankful for the many healthy conversations we had about it. It's been nearly 2 years and we've gone through every conceivable emotion but it's good to accept that death comes to us all and it's important that we talk about it long in advance of it being a near reality.

I'm sorry you are in these final stages with your grandmother and I wish her a peaceful and comfortable conclusion to a much-loved life.

I agree.

I lost my daughter and quite a few people could not mention her or our loss and I know they'd be uncomfortable if I did.

This is so interesting, thanks for sharing. I’m from a different culture and what you say makes a lot of sense. It seems like there’s no agreed script for death in the UK, it can make it tricky to navigate for outsiders as well.

I follow Katie Costello on Facebook. She is a Soul Midwife and has had a career in palliative care. She talks openly out death and I find watching her quite comforting.

In my experience its the opposite.

The so called devout I know are terrified of illness and death and atheists far more accepting.

OP I hope all is going peacefully and my condolences to all with recent losses.

I agree that atheists are much more pragmatic and accepting of death than Christians. To me death will mean total oblivion. Thinking about leaving my loved ones makes me sad and I hope it won't be for another 20 years but it could be any day. I will want them to remember happy times and I will live on in their memories until I guess my grandchildren also leave this earth. I hope my ashes rejoin nature and travel with the wind.

I know Christians who seem to be very sad and almost resentful that people they love have died and they are still here waiting to 'join them'. That doesn't seem healthy.

Interesting thread. The critical care unit couldn't stop putting needles into my mum hours from her inevitable death. They just couldn't let her die peacefully. I still feel angry about this (7 years ago now).

Pulling out a broader lens, I blame the Victorians and their stuff upper lip (have you read about the silence around the Abergavenny disaster?) and the untold damage wreaked across generations of unexpressed grief. And western socities' refusal to accept any/all signs of aging. There is a real undercurrent belief in living forever. Where does that come from?

Apologies, the Aberfan disaster

I'm Irish but lived in England for many years and never really got my head around the differences in approach to death/funerals etc. My husband is English and has experienced a couple of Irish deaths including my own dad, and thinks the Irish way is a lot healthier. He was mildly freaked out by the open coffin but liked the sort of business-as-usual normality of it all.

Funerals happen very quickly, usually 2-3 days after death. I can't speak for the whole of Ireland but around here, in the Catholic community (and I mean culturally Catholic rather than necessarily actually religious), in the days leading up to the funeral the body will be either at their home or a close family member's home which will be an open house that half the town turns up to to pay their respects, or increasingly commonly in a funeral home that will have time slots for visiting but is otherwise very similar and people will just come along to see the family, say a prayer if they're that way inclined, and stay and chat for a bit. The sandwiches and biscuits seem to have tailed off a bit post-Covid though It's almost always an open coffin and nobody bats an eyelid. People speak normally, not in lowered tones, and you'd go along even if you had never met the deceased but knew one of their children for example. Funerals are similarly open to everyone as they just take place during a daily mass, with the front few rows reserved for the family. If you weren't part of the family you would just go along but sit further back.

In England, any time I've been to a funeral it's by invitation only. And yes I agree there's less acceptance that death is going to happen and a kind of stiff upper lip mentality/air of silence about it all.

No. I’m not afraid of oblivion. And I don’t make crass remarks to those who have had a bereavement or are waiting for someone’s life to end either. In fact I find your comments extremely narrow minded and discriminatory as you are very clearly saying your way is the only way and everyone else gets it wrong.

People don’t need to have a faith to have any gumption about them and to know how to behave and what to say in very sad circumstances. I think you need to chose different people to be around. Open up your horizons a bit.

I feel very conflicted about this at the moment.

My mum is dying. She is definitely dying and it is likely to be soon. In any case, she is hugely suffering right now, and in a very bad way.

Obviously I'm very sad about this. But my dad is very much in denial about it, still hopes that she might get better, and wants her to stay alive as long as possible, even though she cannot move, see or speak.

He thinks she still had a quality of life. I do not. I completely understand that he doesn't want to lose his wife and for his whole life to change. But at this point I want her to die quickly, for her suffering to end as soon as possible. He hates me saying this, and would be content to sit by her bed holding her hand for another 5 years. He doesn't acknowledge that she's drying, only that she's poorly.

I hate it. I want her to die soon. I can't bear thins pointless suffering. I don't see how she can be content or happy if she can't move, see or speak. Surely that is everyone's worst nightmare.

I don't want her to have to endure more of this. I would end her life now if I could.

We have distanced ourselves from death, so we can’t be surprised that he comes as an unwelcome stranger.
My great grandmother was the village midwife, nurse, and she also laid out the dead, nearly always at home. My grandmother visited the bereaved, that was an established ritual. My mother would not visit my father when he was dying, although the hospital had made great arrangements for us.

For myself, I try to follow my earlier female ancestors. I will talk about the dead with the bereaved, I don’t pretend they never existed,,or skip over evidences of grief.

I find the terminology of ‘ passing’ bizarre. Where are the dead passing to? Have we retreated to a Greek idea of the river Styx , with the souls trapped on the other side?

I wish you strength and peace OP. My thoughts are with you today.

Funerals are similarly open to everyone

it’s the same whee I live but people are buried within hours. In fact it’s a persons responsibility to join a funeral procession if these one and it doesn’t matter a bit if you don’t know the person who has died, or their family. Also if you pass a house and there is obviously a funeral gathering going on you are free to go in and offer condolences.

I’m very open about death and dying. I have a condition that will most likely be the reason I die (not for a long time yet I hope) and since my teens I’ve spoke about my own death. It’s not something I’m uncomfortable with. I have no religion or belief system, it will be the end of my life and life without me will go on.

My family refuse to talk about death, they say it’s too morbid, they ask me not to talk of my own death despite it being a way for me to accept my own mortality and impending demise.

when my grandfather was dying I was the only person he could talk about planning for dying with because no one else would face the fact he was dying. It was such a relief to him to have someone listen and not shit him down. My relatives employed some very strange systems of behaviour, going against my grandfathers wishes to appease their own grief and each claimed it was what he would have wanted. I was the only person who listened to what he actually wanted and none of that was what happened.

As sad as I find death and grief on a personal level I also find great comfort in having had these people shape my life and feel like it’s my duty to honour them by living, talking of them often and celebrating what they taught me in life. This idea we have to close all the curtains and hide ourselves away as an honour is bonkers. The biggest honour and greatest respect is to live your life now, enjoy it while you have it and take the lessons the deceased have taught you and share them with the world.

@FrenchFancie I’m so sorry for you and your family, such a time of grief, even when someone you love dearly has had a long and happy life. A difficult death is such a hard thing, she will be a peace soon, and she will die surrounded by a loving family.

I think what you say is so true and important to talk about. People seem to just not know what to say or do, this seems to lead them to hesitate and ultimately avoid engaging.

I think the way other cultures deal with it varies greatly. If there is a time in life when a religious framework becomes a true comfort for people, then I think death would certainly be it. In Tibetan Buddhism they have a very structured, but very humane approach to dying. Life and death are seen as one in many ways, and a large part of meditative practice in Buddhist traditions involves contemplating death and dying. Death is ever present, because the reality of death is true for everything that lives and so it a good route to seeing reality for what it is. In the Tibetan tradition a lot of emphasis is put on the individual dying, their journey to death, and often the final moments will be completely alone to allow the person to let go in peace. The structure is I think mostly focused on them, The Tibetan book of living and dying goes into detail of this tradition, I haven’t read it in years but I remember being very moved by it.

In the Jewish tradition there seems to be a lot of formal customs too these seem to have more focus on the mourners with a mix of encouraging the outpouring of grief, as well as quiet mourning which can last for a year. It ranges from sitting shiva for 7 days to a prolonged period where mourners will avoid gatherings, music, celebrations in honour of the dead. I think this is mainly in the orthodox tradition now.

It feels like this sort of script would be useful to have in the UK, but I suppose maybe it fell away in part because people found it too restrictive. It does make it difficult for people to connect when they need it most though, it seems a lot of people tell themselves “oh I don’t want to upset them by bringing it up” but this can be so isolating too for many people.

“They say you find out who your real friends are when you are bereaved. I sadly found this to be true when my ds died. People who I thought were close suddenly refused to talk to me/cross the road from me.”
@MyFragility I am so very sorry you went through this, it must have been heartbreaking at an already profoundly painful time of losing your DS. To go through such pain, and for people not to be there for you, because they wanted to avoid a relatively small discomfort must have been shocking. Unfortunately, the story that gets told in our culture again and again is that people will rally around when there is a death in the family, and it will likely be the people closest to the deceased who will want to withdraw from social contact. This is often not the case of course, and becomes a convenient belief for people who struggle with the awkwardness of it. You should have had more support 💐

I agree! Most HR policies also don't reflect the need for some time to grieve or bereavement counselling!

Most of them seem to be a day off for the funeral & straight back to it!

In lots of cases this just isn't possible!