Terminal Agitation can be a common symptom of the dying process.
It can start a couple of weeks before death and can be characterised as being behaviours that are restless, unsettled and anxious in nature. Some patients are fidgety, others distressed, sometimes angry, sometimes confused. And the causes can be complicated and multifaceted.
Often patients are hypoxic, or have deranged blood work.
Their primary disease may be affecting their bodies adversely with pain, and sepsis, infection and organ failure being other important factors.
Hospice care is often all about managing these conditions.
Medication has its role and is a big factor
Communication and the simple but practical dealing with issues such as dehydration, constipation and retention of urine are others .
It’s a complicated issue.
This morning, in the wee small hours when nothing feels right
Medications and communication and pain relief and positioning all had a role to play in the quietening of terminal agitation.
But the final straw that helped the most, at 5.30 am when the patient was most forlorn ?
A cool, almost cold pillow against a cheek
A pillow that had been left next to a slightly open window
A pillow smelling “ Vaguely of the Irish sea”
So much poetry.
ReplyDeleteNew, the final line , the patient said
DeleteSometimes it's the simple things that mean so much. xx
ReplyDeleteTo us all me thinks
DeleteThank goodness for the hospice and for that one thing which brings relief and peace. I can just imagine the cool freshness of the pillow.
ReplyDeleteWe all have pillows x
DeleteI wonder why? I can imagine a pillow against the cheek could be reminiscent of the womb and therefore comforting, but a cold one must have another reason.
ReplyDeleteThe coolness is refreshing like a cool hand on your brow
DeleteI can understand any of those being soothing, although I’ve never held a pillow that smelled even vaguely of the Irish Sea. Providing hospice care is the most loving of gifts for those in need.
ReplyDeleteWe also use heat pads to help with pain
DeleteComfort comes in many forms, and often transcends the medical. Takes an experienced and caring nurse to see and know how to act and treat. Well done, John. Not all angels have wings.
ReplyDeleteThe sea comment wasn’t my line
DeleteIt’s what the patient said
This has made me cry.
ReplyDeleteYou write with such honesty.
Why is the process of death and dying, such a big secret? I sat beside each of my parents, within weeks of each other, and watched them die. It was agony to not understand what was going on and what to expect. The medical staff did not help me to understand and only explained their knowing after each had died. I could have coped so much better if I knew then from what you have gently explained here.
What a kind soul you have. Thankyou
Hospice nurses and most nurses with experience in palliative care will explain the death processes clearly and compassionately to relatives
DeleteKnowledge is power
Having just gone through this process with my Dad I think the following thoughts.
DeleteI deeply appreciated the explanations and the assistance from the palliative care nurse. At the same time I wished I had known all of that ahead of time, I would have been better prepared for it.
John, are there any books you would recommend that talk about this process perhaps not quite medically but more generally?
Here in Australia we were lucky to do palliative care at home and they trained us the family how to do the medications needed. Dad had dementia and was not suitable for the hospice as it did not have any way to stop wanderers and was very close to a train line. Not that he was in any fit state to wander during the last days but it was such a blessing to us to do this at home for him - in comfortable surroundings for all of us but especially him.
With regard to what happened after death, I was lucky in two ways - I had just watched "The Casketeers" which is a reality show from New Zealand and their tradition there is to dress the departed, which I would not have thought of myself and I did this. It was very special and I will never forget it.
The other lucky thing was stumbling on a book "Smoke Gets in Your Eyes: And Other Lessons from the Crematory by Caitlin Doughty" - she has a lot of youtube videos as well under ask the mortician. It talked a lot about the different death rituals around the world.
I appreciate you posting about this, it is a very important topic. So many of us think by the time we arrive at death there will be a cure for it - there will not, and as they say here - the five P's - proper planning prevents piss-poor performance. ;)
Imagine all this with a dying man in a front room 50 years ago. How many people have actually seen death in the raw I wonder, yourself included. A cold pillow over his nose would have brought the best relief.
ReplyDeleteBoth my grandmothers died at home with me around as did my brother .
DeleteMy father died at the breakfast table .
I find that most people need the process of dying explained clearly . They often have no experience of the stages and often panic at the most normal of situations
Our front room was like something out of a horror movie when my father died.
DeleteThat sort of situation needs careful support . District nurses, GP, specialist nurses like our Hospice at home service, support workers….
DeleteUnfortunately not always at hand leaving families alone
When my FIL was dying at home, dear AMIL asked me how she would know when he was gone. I explained the lack of breath, the grasual change in skin color and the cooling of the skin. She called two mornings later to say he was gone and that it had helped so much to know what to expect.
DeleteHugs - Barbara Anne
There was no mistaking my father was going nor that he had gone.
DeleteSounds rather traumatic
DeleteThat is an insult.
DeleteNot at all, you mentioned that the scene was something out of a horror film , that’s why I said it sounded traumatic , which is probably an understatement
DeleteIt was an understatement. I found it insulting.
DeleteWell I apologise , not knowing the full facts I can only guess at what you meant , I suspect is was very traumatic
DeleteI never want you to feel insulted by anything I said in this topic
Did your family have any professional support when your dad died ?
DeleteOf course not. What do you think happened in the the 1960s? Didn't they cover the old days and subsequent improvements in any studies you may have undertaken? Why do you think we were in a horror film that weekend?
DeleteI have no idea what happened . I have no idea when it happened
DeleteI have no idea what, if any support your family had
I was asking if you had ANY support at all
Have you had any support or help since?
No of course not. I told you it was 50 years ago (more in fact).
DeleteEnter Ursula !
DeleteOh Lordy Lordy ….no please
DeleteKath
I wish you had been there for my mum who left in 1991 in hospital(cancer)56 years young - I was with her at the end - It was awful-she was in agony - the nurses kept saying when I pleaded for pain relief that we had to wait for a Dr x
ReplyDeleteOne of the first thing the hospice doctors do when a patient is admitted is to write up a whole list ( a comprehensive one) off what we call anticipatory meds
DeleteMedications required for every eventuality that can be given immediately if required
My Aunt chose to be cared for in a Hospice-She had Motor Neurone Disease -she could have stayed at home with visiting Nurses -She preferred to be looked after in the Hospice for my Uncle I think-I was with her at the end and though we were told she didn't have long-My Aunt just slipped peacefully away sitting up slightly with her head resting on a soft pillow x
DeleteThat was me x
Deletefew places support motor neurone patients expect hospice care
DeleteIn the 60s, we three children watched my father's long, slow death from cancer. At home. Doctor came once a fortnight. No adult/outsider at all to help. No rubber sheets. No washing machine.
ReplyDeleteI expect death at home was much more common then. He eventually died at the end of the summer. We were 11,16 and 19, with birthdays within days of his death. I was the 11/12 yr old.
Veg Artist-I .am so sad for you- I was 31 and still traumatised- It must have been so much worse for you being so young xx
ReplyDeleteI didn't find it traumatic, Flis. It had been going on for so long, there was just a sense of "This is how it is." I was more worried about being homeless when he did finally die. I didn't understand that we owned our house, and that because my brother and sister had just started work, there was enough money coming in, so we stayed there, the three of us. We've all done fine!
Delete(Because people ask me, and readers are no doubt thinking it, my mother had died when I was 5.)
xx
DeleteI often muse were. some things done better when death was a “ normal” event for home .
DeleteI doubt it.
But what I do think , death was a normal part of life and perhaps adjustments to the event were easier
Who knows?
I am seeing more relatives that perhaps have never experienced death before or even seen a dead body
It is a shame that you did not come into hospice nursing earlier in your career as you seem to have all the right credentials - including oodles of compassion and "out of the box" problem solving skills.
ReplyDeleteI hit it at the right time YP
DeleteIt can and does burn people out.
A cool pillow is not just for the dying, I often turn mine over to the cool side if I wake during the night.
ReplyDeleteMe too…it’s a lovely treat when you feel hot and bothered
DeleteMe too, all through the night. No surprises about helping a man to a cool pillow.
DeleteExactly , just common sense ….but for all the meds and the care plans regarding agitation , it was the one simple thing that helped the most
DeleteAnd anyone would have done it worth their salt.
DeleteAbsolutely
DeleteThat made me cry. You explained it all so well and it made me realise what had been happening during the last 2 weeks of a friend's life. Thank you so much for that.
ReplyDeleteIt’s important to realise that agitation is normal
DeleteIt’s also something that can be effectively treated
I have,I think, noticed that people who are preparing to die, seem to spend increasing amounts of time 'on the other side' having periods of gazing into the distance and not being disturbed by what goes on around them. I am not talking of people who are ill. Just that there 'time' is coming.
ReplyDeleteThanks for writing this post .John xx
Kathy
I call it that “ faraway look”
DeleteA simple kindness to help ease the final journey.
ReplyDeleteAlways think what I would like
DeleteI, like many, find lavender very calming. When anxious, I burn a scented candle and put a sachet under my pillow. You have such wonderful empathy, John.
ReplyDeleteAlternative therapies are used daily in the hospice and not only with patients , aroma therapy and massage are often offered to relatives in a bid to deal with stress
DeleteWe have two therapists
For some reason I am wondering: do you use strong overhead lighting in this kind of situation or do you keep it dim?
ReplyDeleteIt depends on the patient , often low lighting is better than too dim a view in a patient’s room.
DeleteDim rooms cast shadows which often can misconstrued into frightening shapes and illusions
Would it be too much for the world if there was a TV series (or movie) about hospice and dying? If it was handled well (honesty, truth, loving and kind) I think it could help us all not to fear death, but to truly LIVE while we can! John, you'd be the consultant for the show, sharing your vast experiences. I'd watch that show. You have much to give, dear John. We all have much to learn.
ReplyDeleteKarla
DeleteNo one would watch
Me thinks ….much of my job is to prepare relatives about what to expect when death approaches. What happens to the body systems
I wish someone would put together such a show. I do think people would watch it. Shows like 24 hours in emergency or police custody or ambulance etc have a lot of viewers, I think this would be no different.
DeleteI do recommend The Casketeers if you can find it - it is just beautifully done. I think most places have it on Netflix. :)
My comments never seem to get published, not sure what I'm doing wrong, but I'll try again. Thank you for this , my Dear Mum died recently and the terminal agitation was very distressing at times to watch - I resorted to singing Mum's favourite hymns on more than one occasion ( poor care home staff ) but it helped.....
ReplyDeleteAlso what helps is talking about these things. Surely we all would benefit from being more open and informed about the death process.
Alison x
Alison
DeleteSometimes GP and care home staff are not trained enough to feel confident to use the type and strengths of medication that we use.
Syringe driver meds can help agitation very effectively
All too often loved one's panic, call an ambulance, and the person dies surrounded by bright lights and strangers in an emergency room. Thank you for explaining, thank you for being there.
ReplyDeleteOften things can be sorted at home , but community support is getting more difficult x
DeleteMy top dog had the most attentive care in dog hospital -Far better than my mum x
ReplyDeleteOh yes. That cool pillow and perhaps another human hand to hold.
ReplyDeleteHand holding is powerful , I agree
DeleteYou have such a way with words and it's a pleasure to read your blog posts, funny, sad, or in between. Today's post is wonderful and so touching.
ReplyDeleteThe pillow cool and smelling of the Irish Sea must have been transforming to your patient.
Hugs - Barbara Anne
I’ve just tested positive for covid !
DeleteOh, what a bugger! Hope it's a mild dose. xx
DeleteI’ve a sore throat that’s all
DeleteWell, damn, John. Any idea who you've been around that may have passed it on to you?
DeleteI hope it goes easy on you since you've had the shots!
The final throws of it have been at work
DeleteCOVID?? Aw gees. My son and DIL had their home ripped apart for a contractor to work on, finishing my son's office and their en-suite, in preparation for the room shuffle for the arrival of the new baby. My son came down with covid (for the second time) and then my grand daughter got it. Blessedly my pregnant dil did not. What they were most upset about was the two week delay in the contracted work. Even worse? His child came home with covid and delayed it all even more. Hope your positive does not affect the renovations in your bathroom.
DeleteI’ve just texted the CBM
DeleteOh, no! That's an unexpected way to get more time off. Hope it's a mild case and that the bathroom is finished so you can self-isolate in comfort.
DeleteHugs - Barbara Anne
Crud! Wishing you minimal symptoms and a quick recovery.
DeleteI feel a bit tired my friend that’s all
DeleteMy Mom was in a nursing home at the end of her life and I remember now that she WAS quite agitated the weeks before she died. I would visit her everyday and I would hear her voice shouting down the hallway before I got to her room - "Please, God, please, God..." over and over. I would hold her and comfort her. I wasn't there when she died but I was there soon after and I was glad she was at peace. Thanks for explaining about dying, John. It is so helpful.
ReplyDeletePerhaps it clarifys a few point s x
DeleteSorry to hear you have Covid, John! Hope you feel better soon. Rest!
DeleteHaving the meds to ease dying is essential. I've now seen individuals dying a couple of times and the nurses were exceptional, much like you.
ReplyDeleteMaking death more comfortable is a skill all nurses should have
DeleteWhat a wise post. Whether we are at the end of our days, or simply at the end of a day, what we want is a soothing place to lay our heads.
ReplyDeleteOh dear, John. Covid. I hope it's mild and, if not, that you get the same care and attention that you always provide for others.
ReplyDeleteI’ve got a minor sore throat , nothing more but thanks Kris
DeleteMy mom said she was comforted, as she lay dying at home, by the sewing machine I was working at in her bedroom. I've always thought that lying abed for days must get very lonely, and maybe she was just glad someone was there. She had a great palliative care nurse and my aunt, a retired nurse, who explained everything to those of us with Mom over the last few days, and who took the most gentle, loving care of her. It meant everything to us. -Kate
ReplyDeleteI had a patient that referred to the calls of the herring gulls on west shore as comforting
DeleteWhich makes sense, doesn't it? A cool pillow IS comforting to someone agitated and worked-up and perhaps too warm. It's really the simplest things that give comfort, it seems.
ReplyDeleteMy mother's last words when she died at home whilst watching two-channel TV were, "This is a load of rubbish. What's on the other side?"
ReplyDeleteMy father died telling a joke, I never was told what it was
DeleteSo you weren't there.
DeleteNo I was working on accident and emergency as a student nurse. I got home after the event
DeleteYou implied you were at home. Made a good embellishment.
DeleteNo I didn’t , in the sentence before I said I was at home with my grandmothers and brother.
DeleteThe next paragraph I noted my father died telling a joke…that was an aside
Not clear at all.
DeleteYour words did not imply that.
DeleteI apologise if I gave the wrong impression
DeleteChrist Rachel ,
DeleteWe have a saying here which goes “ she could fight a circle-saw -and it a runnin”
You are certainly spoiling for a fight
Kathleen.
John can look after himself.
DeleteYes I can , but I’m feeling rather battered tonight so thank you “ Kath”
DeleteAlways wanting to be friends with everyone and never daring to actually stand up for your friends John. No confrontation unless it is with those who really matter to you and they don't count because they will always come back ? Eh?
DeleteI’ve no intention of exploring this any more here as i have no idea of where I confronted you , except ofyour mention of “ odd” comments which I disagreed with .
DeleteI am happy to discuss this off line if you would like
This feels somewhat toxic and I’m sad another interesting blog has been hijacked by another woman wanting a fight
DeleteKath
Let’s all leave things there
DeleteNo you didn't confront me. You just continued to insult your friends as always. I won't be coming back.
DeletePlease email me if you want to explain
DeleteI honestly have no idea where you are coming from today Rachel
I no longer wish to speak to you. I am sick to death of you. Your blog stinks and all of yesterday's confrontations were your fault for not acknowledging perfectly acceptable comments.
DeleteHello , it is Kath again,
DeleteRachel ,forgive me but I suspect you are either highly strung today or somewhat intoxicated.
I think John has shown much patience with you tonight, and you have goaded him on at least four comment threads which I find rather pointless .
He’s obviously a friend as well as a blog colleague, so I suggest some distance.
This post doesn’t really warrant such vitriol
Saint john
DeleteRachel
DeleteSo be it
Good luck to you
I think it would be nice if we; held hands -closed our eyes and said " Peace be with You" x
DeleteThank you John. Will you please deal with your anonymous commenters and tell them to keep out of your life with your blog friends and you will, and would rather, handle them yourself. If this is no longer the case, then I will happily take my decision as being correct in not speaking to you again. I don't know who the "Kath again" is but she is totally out of order and you know it.
DeleteDeal with?
DeleteThis was a post about terminal care and not a bun fight about anything else
DeleteI consider you as a friend ….but I’ve not been in this situation with friends before like this
Let’s leave things to calm down
Why don't you tell flis it is none of her business for starters?
DeleteOh Rachel. It’s a blog, it’s not life …let it go eh?
DeleteYou are totally suited to political life.
DeleteOk
DeleteYou badly let down your friends.
DeleteAnyway... I thought my mother's last words were quite humorous and apt under the circumstances. Goodnight.
DeleteOh Dear, I think 'P' may be back!
DeleteSome very odd reactions to your cool pillow treatment here John.
ReplyDeleteLots of personal tangents nothing odd in my mind
ReplyDeleteOf course, I would have expected nothing less from you.
DeleteI don’t understand
DeleteSaint fucking John Gray.
DeleteGoodbye x
Oh dear
DeleteJohn don't lay on your lie back with covid x
ReplyDeleteJohn don't lay on your back with covid x
ReplyDeleteTummy x
DeleteI’ve no symptoms flis
DeleteThat's good John -I am mentioning this because when my cousin had it he told me -you must not lay on your back- but lay on your front because of lungs filling up with fluid x
DeleteThat’s when you are on intensive care flis lol
DeleteWhy do you say lol? Out of context.
DeleteSomething so simple can be so effective.
ReplyDeleteSorry to hear about your positive test..you will have to take it easy for quite a while xx
If only
DeleteTake it easy John.
ReplyDeleteYou too pat
DeleteAnd so now I'm wondering if my husband with last stage Parkinsons and dementia is in the final two weeks of his life as he has intense agitation as you describe.
ReplyDeleteHave u a palliative care nurse?
DeleteHe's in a nursing home John. A good one.
DeleteJohn, when I read your blog today, I immediately thought of my mother. She died last August at 101 years. My sisters and I were taking care of her in her own home for the last 3 months of her life. I was on duty one night when all of a sudden she was a different person. We later thought she must have had a small stroke or something, but her behavior changed to the symptoms you described exactly. Her mind saw things that weren't there, she was reaching out to someone or something and she was talking about crazy things. We immediately got hospice involved and what a relief. They were wonderful. They explained the process of dying, like you told it. She lasted another 10 days with her family by her side. You told it so elegantly, I had to share your blog with my family. They all thought it was wonderful. Thank you so much for your wonderful stories and experiences. I love reading your blog every morning. Hugs to you.
ReplyDelete