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My father had every right to die at home. Credit: Radiator/IMBD
My mother liked to tell me stories of medicine at home: how I was born on her bed, and how her own mother had died in hers. Both tales involved family doctors of the old-fashioned sort, with black bags and tickly stethoscopes. Both were easy operations. I emerged in a couple of hours, while my grandmother, who had brain cancer, was given “enough morphine to kill a horse” and floated off in her sleep. Both stories ended in tea: my parents sipping it from mugs on the birthing bed, my mother making some for the doctor after leaving the deathbed, cutting him a slice of parkin as he leaned against the Aga and said the thing about the horse.
As time wore on, and first my mother passed my grandmother in age, then I did, my mother told the birth story less and the death story more. As they entered their eighties, both with chronic illnesses, she and my father spoke often of the easy morphine shot and the effortless, paternalistic, shouldering of responsibility of the doctor who administered it. It seemed more outlandish and yet more enviable with each year. “That Dr Shipman,” my father would say, sighing gustily. “Caused all sorts of problems.”
“Dr Shipman did murder rather a lot of his patients,” I’d remind my dad. And it wasn’t just the subsequent regulation of doctors and their bags which discouraged people from dying at home. Preferring hospital as a place of death has been a trend for more than century: my grandmother, in 1967, was already a bit of an outlier. Hospital seemed — was — safer, cleaner, the right place to be. Until, that is, the pandemic. Deaths at home in the UK spiked immediately in lockdown, as you might expect. And they haven’t fallen since. Almost 90 more people than usual died at home every day last year, a fifth higher than in a typical year. That constitutes, as Cambridge statistics professor Sir David Spiegelhalter put it, “a major change” in national habit.
But, Spiegelhalter went on, we don’t know why this change is happening as it “hasn’t been studied sufficiently”. We keep no records of why someone died at home. It might be by choice — most people will, like my parents, state a preference for dying at home when asked — but relatively few individuals set out their wishes in a formal Advanced Decision. Even when they do — my parents had three each, including one in a pot in the fridge — there is no national protocol for dealing with them.
Looking at causes of death does not help much, either. Most people take Covid to hospital. A little of the increase, we are beginning to learn, comes from the ambulance not arriving on time, but not much. The great majority of deaths at home derive from the same sort of slow, chronic conditions that end most lives in hospitals: heart disease, cancer, old age. The leading causes are dementia and Alzheimer’s disease, with diabetes being the most common contributing factor. There is no special reason, there, for a sudden and lasting change in behaviour.
Perhaps we should be looking elsewhere, not with the patient but with the carer. Anyone dying of dementia at home needs an especially dedicated one. And diabetes — imagine, as my mother would have said, the washing. (Domestic work was always on my mother’s agenda. I never did it to her satisfaction.) Think, my mother would say, and my mother always had a point, of the sheets. Think of the woman washing the sheets.
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SubscribeOf course we should die at home. Hospital is for those who can be cured or repaired, not a place where we eek out a few extra, miserable days. My mother died rather young, in her own bed in her own home. Her last words were “I don’t want to leave you all”, not “Where am I and who are you?”
Oh gosh, your comment about your mother’s last words has made me quite emotional. May she rest in peace.
I kept my wife at home to die, and my father, and will also do the same for more of them most likely.
When they are beginning to pass, the last several days, they come in and out of coma like sleep. Breathing is so labored that they are exhausted by just keeping that last thread of life. The Brain is the most energy demanding organ, and so when you ask things – speaking clear and direct – you can see they are coming back out of this deep well of sub consciousness with great effort, because you called them back; they slowly come back and will say a bit, and that soon wears them and they slide back into what ever place they go….
I remember two of my wife’s last thoughts. I was asking her (we made many exotic and long travels) ‘what was your favorite trip’ and listing half a dozen of them. She came slowly back and opened her eyes – you could see she was thinking, and said ‘All of them’, and sank back into her coma.
The last was about fishing. I fish on the coast a lot, and we eat a couple of the kinds of fish I catch; she always would come and watch, she loved being on the sea as much as I, and not eating much red meat she ate the fish I caught always, a couple times a week at least. I named the two kinds I fish for and asked her which of them she liked best. Again she slowly came back and thought and replied, ‘I love both then both’.
It is odd; end of life. They fade away, and at the end you can see staying alive is so much work that has becomes suffering rather than a peaceful deep sleep. There are names for the stages of breathing, and at the last one, it is painful, the body cannot help fighting, but it is so hard…..it is time….
And they you kill them basically. Hospice has left you morphine and a benzo narcotic for the pain of end of life, and an oxygen concentrator machine for their O2 supply. The hospice visitor has basically told you how it is, and then leaves you to figure out what you will do, it is just you and other family – no one will come, you elected to do the end of life.
So you put a narcotic pill (made to dissolve instantly, under the tung or in liquid) in the needle-less syringe, then fill it with morphine, put it into their mouth slowly. Then turn off the Oxygen machine – they keep breathing, you are surprised – and it takes hours – and when you are in the other room, or reading, or fallen asleep by their bed they stop breathing, and it is over. An odd thing is the physical change. In that instant they go from looking like a person to looking like a dead person – an amazing thing. When life leaves the body they look dead – so different, unexplainable, but a dead person does not look like a living one – they just do not – life is a force, you learn.
It is really not that bad, doing end of life care. I do not mind it, it is so real, so inevitable, the path is set and you all just go down it. It is the Great Wheel, and we are designed to go down it. We do always feel a little guilt after, and must tell ourselves to not – but we think of the things we did not do well during their end times – and they are many as this is new to us, but it is fine. We know we did the right thing, it was very much for the best, it is just what it is, and we did our duty to them. I would tell others it is OK – doing end of life care is not terrible, I would say do it. You do learn of life, and you do learn of death – and you did the right thing as you saw it. It is not that bad.
The hard part is later, a couple weeks later, if it is a spouse of decades – life just becomes gray… then the roughness is more – but that would come no matter where they died – and you do feel better for doing the process with them, till death do us part and all…….
Thanks for sharing your experience. This was beautiful but gut-wrenching to read.
I second that. Thank you
I second that. Thank you
I think you have shared something very important and I have never read anything like it. Thank you.
Thanks for this Elliot. What you wrote is very moving, and practical, and reassuring. My wife is very likely going to die a long time before me due to serious lifelong illness. During Covid, which would kill her if she got it, I fancifully intended to handcuff myself to her for the trip to hospital so they couldn’t separate us!
My mum died at home when I was 15, and my dad called me in to the bedroom when she died to resuscitate her by mouth to mouth – which was completely pointless as she was dying from cancer. I did what I was told in his panicked moment of grief – and I was able to try because by that time I had ‘separated’ myself from her situation. For me the life force had departed her body before death really.
She returned to Catholicism when diagnosed, and pathetically in my teenage view went to Lourdes for a ‘miracle’ cure – and ironically it brought her to the end much sooner. It made me very angry about the delusion of religion at the time, but now I see the great comfort it provides to people, especially those who are nearing the end of their lives.
Great comfort, indeed. “Strength for today, and bright hope for tomorrow.”
Great comfort, indeed. “Strength for today, and bright hope for tomorrow.”
Thank you.
Thank you!
Thank you for this. This is the first time that I have read a description of that time when someone moves in and out of consciousness. We looked after my mother at home in her last days of breast cancer, with the help of Marie Curie nurses. I spent the last days lying next to her as she spent longer and longer in that deep well of sub consciousness, I was 15 and kept telling myself that I must remember what this feels like, to have her alive almost sleeping next to me. The last time she came to consciousness, her last words were “I now know God is Love”. She was not a religious person although had been spiritual. It is something I have thought about often, although I too am not religious in any organised sense. Thanks for sharing your experience.
Thanks for sharing your experience. This was beautiful but gut-wrenching to read.
I think you have shared something very important and I have never read anything like it. Thank you.
Thanks for this Elliot. What you wrote is very moving, and practical, and reassuring. My wife is very likely going to die a long time before me due to serious lifelong illness. During Covid, which would kill her if she got it, I fancifully intended to handcuff myself to her for the trip to hospital so they couldn’t separate us!
My mum died at home when I was 15, and my dad called me in to the bedroom when she died to resuscitate her by mouth to mouth – which was completely pointless as she was dying from cancer. I did what I was told in his panicked moment of grief – and I was able to try because by that time I had ‘separated’ myself from her situation. For me the life force had departed her body before death really.
She returned to Catholicism when diagnosed, and pathetically in my teenage view went to Lourdes for a ‘miracle’ cure – and ironically it brought her to the end much sooner. It made me very angry about the delusion of religion at the time, but now I see the great comfort it provides to people, especially those who are nearing the end of their lives.
Thank you.
Thank you!
Thank you for this. This is the first time that I have read a description of that time when someone moves in and out of consciousness. We looked after my mother at home in her last days of breast cancer, with the help of Marie Curie nurses. I spent the last days lying next to her as she spent longer and longer in that deep well of sub consciousness, I was 15 and kept telling myself that I must remember what this feels like, to have her alive almost sleeping next to me. The last time she came to consciousness, her last words were “I now know God is Love”. She was not a religious person although had been spiritual. It is something I have thought about often, although I too am not religious in any organised sense. Thanks for sharing your experience.
Thankyou, Katharine.
I tried to make my comment restrained, as I was trying to make the point about how we should all wish to die: In the presence of people we know and trust.
I kept my wife at home to die, and my father, and will also do the same for more of them most likely.
When they are beginning to pass, the last several days, they come in and out of coma like sleep. Breathing is so labored that they are exhausted by just keeping that last thread of life. The Brain is the most energy demanding organ, and so when you ask things – speaking clear and direct – you can see they are coming back out of this deep well of sub consciousness with great effort, because you called them back; they slowly come back and will say a bit, and that soon wears them and they slide back into what ever place they go….
I remember two of my wife’s last thoughts. I was asking her (we made many exotic and long travels) ‘what was your favorite trip’ and listing half a dozen of them. She came slowly back and opened her eyes – you could see she was thinking, and said ‘All of them’, and sank back into her coma.
The last was about fishing. I fish on the coast a lot, and we eat a couple of the kinds of fish I catch; she always would come and watch, she loved being on the sea as much as I, and not eating much red meat she ate the fish I caught always, a couple times a week at least. I named the two kinds I fish for and asked her which of them she liked best. Again she slowly came back and thought and replied, ‘I love both then both’.
It is odd; end of life. They fade away, and at the end you can see staying alive is so much work that has becomes suffering rather than a peaceful deep sleep. There are names for the stages of breathing, and at the last one, it is painful, the body cannot help fighting, but it is so hard…..it is time….
And they you kill them basically. Hospice has left you morphine and a benzo narcotic for the pain of end of life, and an oxygen concentrator machine for their O2 supply. The hospice visitor has basically told you how it is, and then leaves you to figure out what you will do, it is just you and other family – no one will come, you elected to do the end of life.
So you put a narcotic pill (made to dissolve instantly, under the tung or in liquid) in the needle-less syringe, then fill it with morphine, put it into their mouth slowly. Then turn off the Oxygen machine – they keep breathing, you are surprised – and it takes hours – and when you are in the other room, or reading, or fallen asleep by their bed they stop breathing, and it is over. An odd thing is the physical change. In that instant they go from looking like a person to looking like a dead person – an amazing thing. When life leaves the body they look dead – so different, unexplainable, but a dead person does not look like a living one – they just do not – life is a force, you learn.
It is really not that bad, doing end of life care. I do not mind it, it is so real, so inevitable, the path is set and you all just go down it. It is the Great Wheel, and we are designed to go down it. We do always feel a little guilt after, and must tell ourselves to not – but we think of the things we did not do well during their end times – and they are many as this is new to us, but it is fine. We know we did the right thing, it was very much for the best, it is just what it is, and we did our duty to them. I would tell others it is OK – doing end of life care is not terrible, I would say do it. You do learn of life, and you do learn of death – and you did the right thing as you saw it. It is not that bad.
The hard part is later, a couple weeks later, if it is a spouse of decades – life just becomes gray… then the roughness is more – but that would come no matter where they died – and you do feel better for doing the process with them, till death do us part and all…….
Thankyou, Katharine.
I tried to make my comment restrained, as I was trying to make the point about how we should all wish to die: In the presence of people we know and trust.
Oh gosh, your comment about your mother’s last words has made me quite emotional. May she rest in peace.
Of course we should die at home. Hospital is for those who can be cured or repaired, not a place where we eek out a few extra, miserable days. My mother died rather young, in her own bed in her own home. Her last words were “I don’t want to leave you all”, not “Where am I and who are you?”
I hope to die in my sleep at home at an unexpected time. I do not want to spend days or weeks or months knowing it is looming just over the horizon. That would be a form of torture.
But, if that cannot happen, then I want to die at home, among my things and my memories, with my children nearby. If I am in pain, give me good drugs for them and do not be shy. Play my favorite music and burn a patchouli candle. Show me old photos depicting my life journey to remind me of the fullness of the life I lead and to jog fond memories.
When I go, do not waste time and money on a large funeral. Instead, cremate me quickly then have two diamonds pressed from the ashes, one for each child, the rest, spread on a mountain creek. Then, have a party, have a good time. Remember me fondly and put my picture up each year at family gatherings and throw back a whiskey in my name.
Thank you so much for this.
My dad died in September. I got him home, out of the hospital, two days before he died. I gave him good drugs, and I was not shy. My mother played for him the songs they loved. We sang.
He was cremated quickly, and we had a party. We had great foo, lots of wine, relatives, neighbors and friends came.
I still have a broken heart though.
Thank you so much for this.
My dad died in September. I got him home, out of the hospital, two days before he died. I gave him good drugs, and I was not shy. My mother played for him the songs they loved. We sang.
He was cremated quickly, and we had a party. We had great foo, lots of wine, relatives, neighbors and friends came.
I still have a broken heart though.
I hope to die in my sleep at home at an unexpected time. I do not want to spend days or weeks or months knowing it is looming just over the horizon. That would be a form of torture.
But, if that cannot happen, then I want to die at home, among my things and my memories, with my children nearby. If I am in pain, give me good drugs for them and do not be shy. Play my favorite music and burn a patchouli candle. Show me old photos depicting my life journey to remind me of the fullness of the life I lead and to jog fond memories.
When I go, do not waste time and money on a large funeral. Instead, cremate me quickly then have two diamonds pressed from the ashes, one for each child, the rest, spread on a mountain creek. Then, have a party, have a good time. Remember me fondly and put my picture up each year at family gatherings and throw back a whiskey in my name.
First of all any comment about the NHS will not occur – because I am writing from Australia. However I agree with the tenor of this article in every respect. There have been a number of close family deaths in my life (I am the youngest by a long way, and I am 63), and my mother had the pick of it, dying at home with a dedicated palliative care team and her family in the house to soothe and calm and provide comfort in her own bed: and that was in 1988. Others not so lucky: father dragged to hospital two days before he died alone (we hope asleep) when we left his bedside for an hour to go to Mass, sister fighting for breath in a strange hospital, brother having a massive heart attack on a big family picnic…
East or West, home is best.
First of all any comment about the NHS will not occur – because I am writing from Australia. However I agree with the tenor of this article in every respect. There have been a number of close family deaths in my life (I am the youngest by a long way, and I am 63), and my mother had the pick of it, dying at home with a dedicated palliative care team and her family in the house to soothe and calm and provide comfort in her own bed: and that was in 1988. Others not so lucky: father dragged to hospital two days before he died alone (we hope asleep) when we left his bedside for an hour to go to Mass, sister fighting for breath in a strange hospital, brother having a massive heart attack on a big family picnic…
East or West, home is best.
That was a very touching and worrying piece. Those of us in the evening of life (!) and with very elderly parents just hanging on are very conscious of the horrors of what to do when the end comes.
I would make only two points – first, everyone should make a Lasting Power of Attorney for health and welfare purposes, so you or your attorney can have some input into what final care involves. I am not convinced that hospitals take any notice of Advanced Directives – but they might take note of an LPA wielded by a vocal and litigious relative or attorney
Second, “Most people take Covid to hospital.” No – anecdotally, at least, it seems that most people go into hospital and catch it there (I tend to view a routine visit to hospital myself as playing russian roulette.)
”elderly parents just hanging on are very conscious of the horrors of what to do when the end comes.”
I would Never call it horrors, it is not. It is hard, but it just is what it is, it is life and the end of life. The only thing I could think which could be horrors if if the person has not reconciled themselves to making the great crossing to the other side and is afraid, which I do not think is usual. I would encourage some recourse to God and a prayr, and if they held Christian, or other, beliefs, a visit from the Priest after death, out of respect.
Sorry, my comment was unclear. I meant the horrors of dealing with the NHS and other official agencies.
Sorry, my comment was unclear. I meant the horrors of dealing with the NHS and other official agencies.
”elderly parents just hanging on are very conscious of the horrors of what to do when the end comes.”
I would Never call it horrors, it is not. It is hard, but it just is what it is, it is life and the end of life. The only thing I could think which could be horrors if if the person has not reconciled themselves to making the great crossing to the other side and is afraid, which I do not think is usual. I would encourage some recourse to God and a prayr, and if they held Christian, or other, beliefs, a visit from the Priest after death, out of respect.
That was a very touching and worrying piece. Those of us in the evening of life (!) and with very elderly parents just hanging on are very conscious of the horrors of what to do when the end comes.
I would make only two points – first, everyone should make a Lasting Power of Attorney for health and welfare purposes, so you or your attorney can have some input into what final care involves. I am not convinced that hospitals take any notice of Advanced Directives – but they might take note of an LPA wielded by a vocal and litigious relative or attorney
Second, “Most people take Covid to hospital.” No – anecdotally, at least, it seems that most people go into hospital and catch it there (I tend to view a routine visit to hospital myself as playing russian roulette.)
My maternal grandparents both died at home in 1958. They became ill but grandchildren were not told anything or even allowed to see them. As I recall they died within about two weeks looked after by their family. I was there when a doctor visited my grandfather and he filled a syringe and my mother’s words, which I remember clearly were “Is that necessary doctor?” He said nothing and emptied the syringe into the sink. There was no post mortem, their coffins were brought to the house and they were laid out by the family. The coffins only left for the funeral. The health services may have given us a longer life but it is poor quality for many. The state has taken over from family members caring for their elderly because the conditions they have are too complex to be cared for at home and health and safety considerations are another factor. All dignity has been removed from dying since that time.
My maternal grandparents both died at home in 1958. They became ill but grandchildren were not told anything or even allowed to see them. As I recall they died within about two weeks looked after by their family. I was there when a doctor visited my grandfather and he filled a syringe and my mother’s words, which I remember clearly were “Is that necessary doctor?” He said nothing and emptied the syringe into the sink. There was no post mortem, their coffins were brought to the house and they were laid out by the family. The coffins only left for the funeral. The health services may have given us a longer life but it is poor quality for many. The state has taken over from family members caring for their elderly because the conditions they have are too complex to be cared for at home and health and safety considerations are another factor. All dignity has been removed from dying since that time.
My grandfather, a countryman, probably had some sort of internal cancer. He lost a great deal of weight and was clearly in pain but he refused to go to hospital and took nothing stronger than paracetamol. He was cared for by my grandmother, neighbours and, latterly, district nurses until he died in his own bed with my grandmother beside him. He was a great believer in ‘when your number’s up’ and refused any treatment.
During 2020 a much loved colleague, only 40, died of oesophageal cancer. He came from a close Geordie family and died at home with them all around him, ‘Covid’ restrictions forgotten. It was horrible to lose him but comforting to know that he did not die alone in hospital. People have realised that that is still possible and it is what they want and should be able to have.
My grandfather, a countryman, probably had some sort of internal cancer. He lost a great deal of weight and was clearly in pain but he refused to go to hospital and took nothing stronger than paracetamol. He was cared for by my grandmother, neighbours and, latterly, district nurses until he died in his own bed with my grandmother beside him. He was a great believer in ‘when your number’s up’ and refused any treatment.
During 2020 a much loved colleague, only 40, died of oesophageal cancer. He came from a close Geordie family and died at home with them all around him, ‘Covid’ restrictions forgotten. It was horrible to lose him but comforting to know that he did not die alone in hospital. People have realised that that is still possible and it is what they want and should be able to have.
Having recently had two experiences of spending a lengthy time in Emergency, I’ve told my wife, if possible, I’d much prefer to die at home.
God bless those folks in Emergency, but they have long ago completely forgotten what peace and quiet means. Understandable of course, but who can be understanding when your life is ebbing away ….and somebody just dropped a steel bedpan on the marble floor!
It’s a work environment, not a dying one, so people laugh and yell and cry and moan and holler…and drop things…..why not, they’re having emergencies……but I’m not….
So, please, when my time comes, if anyone, including me, realizes it, tuck me in, make sure I’m warm….and hold my hand. Thank you
Having recently had two experiences of spending a lengthy time in Emergency, I’ve told my wife, if possible, I’d much prefer to die at home.
God bless those folks in Emergency, but they have long ago completely forgotten what peace and quiet means. Understandable of course, but who can be understanding when your life is ebbing away ….and somebody just dropped a steel bedpan on the marble floor!
It’s a work environment, not a dying one, so people laugh and yell and cry and moan and holler…and drop things…..why not, they’re having emergencies……but I’m not….
So, please, when my time comes, if anyone, including me, realizes it, tuck me in, make sure I’m warm….and hold my hand. Thank you
I’d rather eat a bullet than die In a hospital or, worse, a “care” home.
I’d rather eat a bullet than die In a hospital or, worse, a “care” home.
As a doc in Canada, I saw many patients die alone and lonely during the COVID epidemic. It wasn’t COVID that caused that. It was the evil of politicians and public health.
Always important to keep a sense of humour. GBS said “Life does not cease to be funny when people die any more than it ceases to be serious when people laugh”. So I’ll pass on one of my favourite quips.
“When I die, I want to go peacefully in my sleep like my grandfather. Not in fear and screaming, like the passengers in his car.”
That one is one of my favorite funnies.
That one is one of my favorite funnies.
As a doc in Canada, I saw many patients die alone and lonely during the COVID epidemic. It wasn’t COVID that caused that. It was the evil of politicians and public health.
Always important to keep a sense of humour. GBS said “Life does not cease to be funny when people die any more than it ceases to be serious when people laugh”. So I’ll pass on one of my favourite quips.
“When I die, I want to go peacefully in my sleep like my grandfather. Not in fear and screaming, like the passengers in his car.”
I would like to die at home, but I know two people who chose not to. The first was a member of our household who thought that if she died at home it would in some way contaminate the place, so she chose to go to a hospice, which was a good thing for her. The second was my sister whose husband died at home after a long illness. My sister said the caring was too much of a strain on everyone in the family and she did not want to put them through it again. She spent only a short time in hospital, welcomed being in the palliative care ward and died peacefully.
I would like to die at home, but I know two people who chose not to. The first was a member of our household who thought that if she died at home it would in some way contaminate the place, so she chose to go to a hospice, which was a good thing for her. The second was my sister whose husband died at home after a long illness. My sister said the caring was too much of a strain on everyone in the family and she did not want to put them through it again. She spent only a short time in hospital, welcomed being in the palliative care ward and died peacefully.
I think most of us hope to be in our own beds, when “the casement grows a glimmering square” …
I think most of us hope to be in our own beds, when “the casement grows a glimmering square” …
All these comments are important and heart felt and I appreciate their authors sharing their experiences. I have also got a lot out of reading the lovely Elizabeth Kübler Ross books, such as ‘Death and Dying’, ‘Grief and grieving’ and more, to help me with my own grief and in my profession.
All these comments are important and heart felt and I appreciate their authors sharing their experiences. I have also got a lot out of reading the lovely Elizabeth Kübler Ross books, such as ‘Death and Dying’, ‘Grief and grieving’ and more, to help me with my own grief and in my profession.
My wife of 34 years, of which almost a decade were hobbled by a CNS degenerative disease, died at home after 5+ years of being bed bound. I remember that time as being difficult for me but worthwhile in that learning to be a nurturing caregiver was the best lessons I ever had.
I moved my office next to her bed room and used a baby monitor to watch her when I had to work a bit.. She was rarely alone and never afraid or upset.
I was standing by her bed during the last hours of Cheyne Stokes breathing.
She had long since ceased recognizing me or anyone. My being there with her was no significant benefit for her was only good for me.
I was able to finally be the true, lasting, supportive partner that I had committed to be so long before.
(A small comment or correction, perhaps due to the difference between the UK and the US terminology. Complicated grief in common understanding here in the US is not the “trauma, degradation, loss of agency and guilt” that most of us feel after a loved ones’ s death. Those are the expected symptoms of common grief.
Complicated grief is the persistent symptoms of grief that seem never to resolve even after months or years and prevent the grieving person from resuming their normal life.)
Thank you for relating your experience. The circumstances you describe are outwardly similar to those of my grandmother’s death. A long-surviving matriarch of 94, she was fortunate and beloved enough to have numerous family members around her in her last months and a few in her last days, all at home.
In her case too, by the end this was for us rather than her. One still feels grief and sorrow for the loss, but in a situation of slow, total deterioration, by the end there is so little bodily enjoyment to compensate for their suffering, with a fading worldly presence or even a departure in all but the technical or legal sense having already occurred. What do we hold onto at that stage? For whom?
I’m grateful for the timing that allowed my grandmother to exit this world in February of 2020, enabling the extended family to have an in-person funeral on March 6th, with careful IRL interaction and optional handshakes or breath-held hugs. That may have been a bit risky or indulgent on our part even at that date, but it was important to the family, and to me.
I’m glad you were able to bid your wife farewell in an honorable way. May all surviving people learn to live on somehow, and escape the ongoing burden of “complicated grief” as you have described it.
Thank you for relating your experience. The circumstances you describe are outwardly similar to those of my grandmother’s death. A long-surviving matriarch of 94, she was fortunate and beloved enough to have numerous family members around her in her last months and a few in her last days, all at home.
In her case too, by the end this was for us rather than her. One still feels grief and sorrow for the loss, but in a situation of slow, total deterioration, by the end there is so little bodily enjoyment to compensate for their suffering, with a fading worldly presence or even a departure in all but the technical or legal sense having already occurred. What do we hold onto at that stage? For whom?
I’m grateful for the timing that allowed my grandmother to exit this world in February of 2020, enabling the extended family to have an in-person funeral on March 6th, with careful IRL interaction and optional handshakes or breath-held hugs. That may have been a bit risky or indulgent on our part even at that date, but it was important to the family, and to me.
I’m glad you were able to bid your wife farewell in an honorable way. May all surviving people learn to live on somehow, and escape the ongoing burden of “complicated grief” as you have described it.
My wife of 34 years, of which almost a decade were hobbled by a CNS degenerative disease, died at home after 5+ years of being bed bound. I remember that time as being difficult for me but worthwhile in that learning to be a nurturing caregiver was the best lessons I ever had.
I moved my office next to her bed room and used a baby monitor to watch her when I had to work a bit.. She was rarely alone and never afraid or upset.
I was standing by her bed during the last hours of Cheyne Stokes breathing.
She had long since ceased recognizing me or anyone. My being there with her was no significant benefit for her was only good for me.
I was able to finally be the true, lasting, supportive partner that I had committed to be so long before.
(A small comment or correction, perhaps due to the difference between the UK and the US terminology. Complicated grief in common understanding here in the US is not the “trauma, degradation, loss of agency and guilt” that most of us feel after a loved ones’ s death. Those are the expected symptoms of common grief.
Complicated grief is the persistent symptoms of grief that seem never to resolve even after months or years and prevent the grieving person from resuming their normal life.)
Quite right. If your parent is dying, keep them the fvck out of hospital. I will always respect my sister for having the stones to cancel the ambulance when our father was dying last March.
Quite right. If your parent is dying, keep them the fvck out of hospital. I will always respect my sister for having the stones to cancel the ambulance when our father was dying last March.