I usually get back home soon after nine am after the first long dog walk of the day
And I spied Mrs C standing by the kitchen wall seeing if I was about.
She wanted my “ professional “ thoughts on something so I left the dogs in the car and invited her in for tea.
Mrs C ‘s father is poorly in hospital. He has covid and is not expected to recover and Mrs C, who is in her early sixties wanted to know just what a syringe driver did and why fluids had been stopped on her father.
The nurse looking after him overnight had been attentive but silent and Mrs C felt as though her questions , of which there were many, could not be asked.
This sort of night nurse I always refer to as The Silent Nun . As death is approaching they glide around as if invisible , say little but always looking solemn and quietly supportive.
It’s as though death is something purely something to be an awe of.
Instead of something normal, albeit it often earth shattering .
I am often surprised just how few people have seen a death up close.
In these days of expert resus both at home and in hospitals many people are treatable over and above their normal life expectancies. The times where granny is gently fading away in a single bed in the corner of the living room seems more of a rarity as it was , and with our busy lives and fragmented families many moments of death are missed or sanitized or both .
The Silent Nun can compound this distancing by giving death a overwhelmingly devout miss en scene .
There has to be a balance of course.
But in my experience death and the process of dying has to be talked about and explained as a normal yet hugely significant undertaking.
I make it a point to ask if the relative has been in this position before. If they haven’t I tend to ask if they want me to be outline what to expect, and the answer invariably is yes.
Patterns of breathing, noisy secretions, agitation, all manner of scary things can be explained in layman’s terms and plans can be discussed for treatments to alleviate some of the symptoms seen.
The relative is brought into the treatment plans for their loved one, they can understand why something is being done ( or not) and by being part of that plan can feel less helpless within the situation.
I answered some of Mrs C ‘s main questions and encouraged her to clarify some others with the ward staff when she returned to the hospital this morning and as she drank her tea I remembered the words of a support worker who I worked with eons ago now. She must be long time dead herself . But she always brought into a family vigil a pot of tea, with a small jug of milk and a sugar bowl with spoons. Cups , coffee, saucers , biscuits on a plate
The works …
“ it always gives the family something to do” she explained “ sorting out the crockery and pouring the tea”
Oh, how I agree with you. Death is part of life, and the more open we all are about it, the better. At a time when things are happening (or not) it's so helpful to have someone explain what's going on. We all have this sanitised idea of death, as just painlessly and gently drifting away, but too often it's not. xx
ReplyDeleteNo .my personal wish would be for hospice care
DeleteYes, we do need to be more open about scary subjects...and the unknown is always scary.
ReplyDeleteThe idea of bringing in a tea tray..that would have been marvellous when my Mountain Man was dying.
The hospice also provides a neat little tray cover which gives the correct impression of a certain care being taken
DeleteI still feel proud of myself (proud isn’t the right word I know but I cannot think of a better one right now) that I was there at my mother’s bedside holding her hand when she died. She had been on the Liverpool Care Path (nil by mouth, no interventions) for four days when she died and it was very peaceful and like watching an old clock wind down. She died on my birthday so an unforgettable day. This experience helped enormously when I found my father dead in his bed. (That is how I wish to die, like an old cat.) Fortunately the meals on wheels ladies turned up soon after and knew exactly what to do. My daughter has a Masters degree in Medical Humanities and her main subject was end of life care. She studied across three schools: the humanities, law and medicine. End of life attitudes are changing, but slowly in this country, and knowledge is key. Daughter has just started a post graduate nursing degree. She is 26 and I am very proud of her. She also makes a great pot of tea. Sarah in Sussex
ReplyDeleteNicely written. Sarah
DeleteI forgot to add that I really do feel that certain patients pick the day they go. Sometimes to the minute
When you have no experience of death, the mundane things can be so bewildering. You wonder what is significant and what isn't. What can be helped and what can't. What still bothers me about my mother's death over 35 years ago are simple comforts I've learned of since that might have eased her a bit and helped me to be able to give her. I appreciated nursing staff for caring for her, but they never volunteered anything, nor were forthcoming when I was able to formulate questions about what was going on or likely to happen next. I'm glad you are there for Mrs C and your patients' families.
ReplyDeleteYou hit the crux of the matter clearly here.
DeleteEverything can be confusing , and significant events and situations always need explaining
I think you are quite a wise and comforting nurse in your field. You know your stuffs. My maternal grandmother was treated very badly in a private Catholic hospital as she died in the late 1970s. Fortunately the hospital has moved on to better care.
ReplyDeleteConfidence is important within nursing , 8ve often said that here
DeleteEverything is talked about now. Sex education in schools. Death should also be openly spoken about even with children. Very often people think they are shielding children from death by not talking about it.
ReplyDeleteDeath is part of life and needs to be explained age appropriately to children.
I agree , totally
DeleteWhen my sister and my father died, we didn’t speak about anything. Didn’t ask questions. Didn’t understand. When SG’s family members have died, we never stopped talking, being offered information, and asking questions. I would never do things any other way again.
ReplyDeleteThere’s a great deal of pressure for families to “ behave” and conform …much of it self inflicted
DeleteI recently attended a death cafe where we talked about lots of things but I still have very little idea what a "death labour" looks like.
ReplyDeleteGiving people opportunity to keep hands busy and ask questions seems very sensible
I’m in work later..I’ve heard of death cafes
DeleteI will research them later
Such an interesting post John. I just managed to get there with David when he was on end of life. I went every day - sometimes he was conscious, sometimes not but he was in a private room and I could always sit by his head and talk to him gently. I shall of course never know whether he understood or could understand what was saying but I hope the love got across that bridge between life and death, It was a gentle passing - as was that of Malcolm my first husband who died at home with the support of Marie Curie
ReplyDeleteHearing is often the final sense to fade at the end of life. So I hope he heard your words
DeleteMore information is always better than less. At least that's my preference.
ReplyDeleteYes it depends
DeleteSome people want none but they are rare
Wonderfully written, thank you.
ReplyDeleteThank you David
DeleteMy mum died in a shocking manner which I am still haunted by - but my aunt who had mnd passed in a Hospice beautifully - she was resting sitting up on soft pillows and then just gently bowed her head forwards x
ReplyDeleteWe use drugs confidently in the hospice
DeleteIn large amounts and appropriately
Thank you for sharing your knowledge and encouragement wtih us.
ReplyDeleteAnytime Mary x
DeleteI imagine it helps a lot to talk about what's happening -- to normalize death as a part of life rather than consider it something embarrassing to be hidden away.
ReplyDeleteBalancing the normal nature of death with the emotion of their passing is a juggling act and takes some skill I mustadmit
Delete"...with our busy lives and fragmented families many moments of death are missed or sanitized or both." So true, John. There is something so moving & spiritual about being present at birth & death especially when everything goes "right". These were often precious moments in my hospital nursing career, being present during the coming and the going.
ReplyDeleteYes, I’m stil in awe with being present even after 40 years
DeleteFrom our seats in the hallway outside our Mum's room, we could see the nurses running in and hear the paddles being used. A nurse brought us a tray filled with teapot, mugs, etc. and explained, when asked, that they were "having trouble regulating her heartbeat". No-one felt like tea but poured and drank like robots. She was dead before it had time to cool.
ReplyDeleteI’m sorry , the sounds of resus are scary to hear
DeleteWhere I live, in the southern US, we've always been brought a cart with a carafe of coffee, cups, beverages on ice, and packaged snacks when waiting at a deathbed. I believe it's called a "comfort cart" by the nurses, which sounds sort of silly, but it is a comfort. And, as John says, it gives you something to do.
DeleteI meant that to be a reply to the comment below. Sorry.
DeleteI can't imagine anyone in a hospital here bringing tea to a family. Or even tepid muddy coffee in a styrofoam cup. Ugh. Maybe it's different in hospice facilities. I do not know.
ReplyDeleteI agree with you that we are incredibly ignorant of how death goes these days for the most part. It's not unlike birth in that we have given up all of it to the medical profession and so it has become scary and mysterious. People used to be born and die in their homes with their family around them. Birth and death are both parts of life that we all go through one way or another and being frightened of them is so sad.
Drinks for family in these situations are not just the provision of hospice care ( though we do trays of tea etc much more easily than general hospitals )
DeleteI’ve seen this nicety on most wards
So true, John. When my FIL was in home hospice care, sweet AMIL asked me how she'd know he was gone. I was glad to tell her what to look for and was glad she had asked.
ReplyDeleteBook 2 or booklet: Hospice care in common terms, by John Grey.
Hugs!
Noises such as fluid pooling in the throat are often the most concerning. Once you explain that the patient is often totally unconscious and therefore cannot swallow, sometimes the noise becomes less scary
DeleteSome meds dry up secretions but they are not that effective
Yes, it is so needed and would be used so many times. A great legacy for you.
DeleteThe book , booklet, I mean.
DeleteThere are many written x
DeleteToday end of life comes in many forms. A friend recently was certainly dying and she had every intervention possible. Dying was extended lying unconscious in hospital with all kinds of tubes and equipment surrounding her. This was excruciating. I had no legal standing and her husband seemed (?) to be making some (?) decisions. Although he says the hospital made all the calls. Visiting, usually with a relative of my friend, nobody from the hospital staff was available. (The Silent Nun resonated with me and it is sad and disconcerting. Dying should not be seen as taboo (money maker) and a gentle passing is the ideal.)
ReplyDeleteI forget that most people have so little experience with death. You and I have dealt with death our whole careers. Death is a normal part of life but like birth, we have medicalized it.
ReplyDeleteAs Ms. Moon said, I can't imagine a hospital with a teapot in North America but it is a good idea. It also normalizes death I think. We can sit and have a cup of tea while we wait because death usually involves waiting, again, much like birth. A gentle death as Susan said, is what I aspire to. Perhaps we could change how our society views death. Not as the enemy but the normal outcome of life.
Plastic cups of plastic coffee is a good kindness too. I also get relatives to complete small jobs if they feel comfortable doing so. Passive exercises, lip and mouth care, etc….have a job is key
DeleteI so wish you had been one of the nurses who looked after my father when he died. The nurses were brilliant but unfortunately no one had time to explain to me what would happen. Google gave me some information, just enough for me to be there when he died. At 71 this was a completely new experience for me.
ReplyDeleteThe hospice often gives you a bit more time with your patient …only saying x
DeleteWhen my dear old Mum was going through her last hours, my exHusbands aunt, a nurse on that ward, brought tea things in for us. It was most appreciated. That said though, I don't know how I would feel about having my relatives standing around drinking tea while I struggled to slip the bounds tying me to this earth.
ReplyDeleteDrinking tea is a very deathbed ritual believe me lol
DeleteI'd like the people around me to be drinking tea and chatting and enjoying each other's company
DeleteYour friend was very wise. The long stretch of 'waiting'. You are totally useless. Nothing to be done. Just sit there watching the clock and wondering when. And is s/he comfortable? And trying to offer support to those around you. Tea? What a wonderfully wise thing: giving them something to do.
ReplyDeleteA tea ritual .
DeleteWhen my my mum was dying in a care home earlier this year it was the periods of agitation that worried me the most - I knew it was to be expected but felt so powerless to help her. Thanks for the caring and considerate post.
ReplyDeleteAlison in Wales x
"How we deal with death is at least as important as how we deal with life."
ReplyDeleteI think I am quoting Captain Kirk, but he was probably quoting someone else.
He had some good ideas
DeleteMy husband is terminal suffering from IPF and is nearing the end. We have what I call a box of tricks in the cupboard to be used by the community nurse when the time comes. I have no idea how I am going to react when it comes but I am just hoping it will be peaceful.
ReplyDeleteBriony
x
Thinking of you. I hope for both your sakes, his end is peaceful, too. Hugs. xx
DeleteThat box of tricks is a useful thing at hand
DeleteYou certainly evolved and developed admirable skills, from that clueless 20 year old psych nurse/ bank clerk, to the exceptional nurse and man you are today.
ReplyDeleteAs for death being part of life, yes sadly true, inevitably an event we all must cope with, but it is not a usual occurrence. My family is small and far away, both my parents died days before I could be there w them. To my eternal regret. I have only one brother, who, again, lives far away.
Yes I’m not so clueless
DeleteThe comfort you give to your dying patients and their families and friends is a wonderful thing to do, John. It makes the experience easier on all of them. Thanks for your good work!
ReplyDeleteA great regret for me is that my lovely MIL was dying of cancer, only diagnosed a week before, and the way the medics handled it, we had no idea how close this was. Instead of spending every minute with her we were still getting our shit together for what we thought would be weeks or months of visits and then she left us with only just time to get back to be there for her last breaths. It makes me so sad to think of it. We were begind the eight ball the whole time due to lack of practical communication. Tiba in west oz
ReplyDeleteI’m sorry , late diagnosis seems to be commonpost covid
DeleteYou're a good nurse, John.
ReplyDeleteThank u
DeleteA doctor called on the phone and in a very business-like matter-of-fact manner told me this organ and that organ and this other organ belonging to my mother's had "discontinued". I thanked him for calling, hung up the phone, and I swear to God that it was a good fifteen minutes before I realized he told me she was dying and that there was no hope. I guess what I'm trying to say is that it's not just what information they give but HOW they give it. Discontinued, sheesh. As if my mother was a computer app.
ReplyDeleteIn my experience doctors are better at the bedside manner but it’s still hit a miss
DeleteThe tea ritual and giving people something to do is brilliant. I have only experienced a few deaths and they were so different. One was very agitated and frightening, and one was a slow and quiet slipping away. Both were a long deterioration and grief wore us down until we could barely function. The most helpful advice was from a hospice nurse who comforted me and said to try not to keep thinking of it constantly. It did work, as I needed to stay strong for the patient but was collapsing under the worry and fear.
ReplyDeleteI've witnessed/supported quite a few deaths over the years. Talking of a tea ritual, when I was working as a community nurse I looked after a famous theatre set designer, a lovely person, who lived in a very grand house. Their final day's included use of a pressure mattress. Having passed away and our duties completed, the nurse assistant who was part of our team was sent out to collect the mattress. She reported back to us in flabbergasted and amused tones that when she arrived, she found the deceased propped up in bed, his jaw held together, I believe with a bandage, surrounded by family and friends sat around the bed, one of whom was a very famous actor who appeared on the stage and lot of British TV series and films, chatting and drinking cups of tea over the recently deceased. I can't recall how she extricated herself from the situation, but it gave our nurse team a good chuckle when she returned. I'd name the designer and famous actor, but out of respect and probably for legal reasons had probably best not! You witness an awful lot in nursing!
ReplyDeleteP oh yes , I have witnessed similar such moments
DeleteIndeed I. Recently had a “ fight” with a patients’ pug over her wig
At my brother-in-laws funeral the vicar commented on the fact that when he visited before his death we were all sat around the room eating bacon butties with Bil in his bed in the corner. He obviously found it a bit unusual but normal life had to go on. The same day to day activities went on around dad's bed (he took 3 weeks to die after being given a prognosis of 2 days) 10 years ago.
ReplyDeleteI like this
DeleteI remember a patients relatives coming to visit a patient in a side room. A large suitcase was being wheeled in with the relatives, the right size for a body . . .
ReplyDeleteI gave it a few minutes and wandered along to the room to see if all was ok. Rather nervous looking son was 'guarding' the door, with a look of terror on his face. On looking through the door window the bed curtain was swishing about furiously.
They had bought the patients labrador in to say good bye.. He was on the bed having a nice cuddle. So I wondered off on my way. The suitcase was taken home 20 minutes later very carefully wheeled away. No one would look at me, but I fear we would have given the game away. I've arranged weddings and all sorts for terminally ill patients, but that was a sly one. No harm done though.
Gosh this is a lovely post. Thank you for sharing it. I will remember this always.
ReplyDeleteSincerely, Thankyou. You restore my faith in that there are still some kind people in this cruel world.
ReplyDeleteAnon
DeleteDo u know what?
In all of my cynical, sad, feeling sorry for myself days
I’ve always believed in the goodness of ordinary people
More than 60 years ago our middle-school home economics class was taught by an elderly woman who had experienced the Johnstown Flood as a teen. She calmly informed us that in crisis it might be "our Christian duty to lay out the dead" and proceeded to describe the process in detail, including how to bag clothing and note rings and physical descriptions for the corpses. (She sternly instructed the 8th grade boys on the digging of trench graves.) She'd probably be arrested now...
ReplyDeleteHow things change
Deletelovely post. Even after having worked in medicine for 35 years and consoling (or attempting to) many grieving families......my only close experience was losing both my folks 5 and 6 years ago. Very different deaths..... Dad first w/ pneumonia, Mom...just said she was *done* after that and decided she was ready to die. Not only were the staff at the care center supportive of ME, as well as tending lovingly to Mom.....but Hospice did so much to help educate me on what would likely happen.....being supportive, available 24/7, and helping me through. It was one of the most profound experiences I've had. A month long process. Looking back, I might have improved on a few things.....both for Mom and for me......but her death was as peaceful as it could have been and I was as prepared as I could have been. I also re-read Elizabeth Kubler- Ross during that month long period of waiting and grieving and this was also a help to me.
ReplyDeleteSusan M