We think we know clouds as we watch them drift in the sky above.
We think we know love – how it feels and how it looks.
We think we know life but only from our little bubble of existence.
And yet, every day we are presented with opportunities to stretch our minds and feelings. To look at things differently.
If only we look up with more interest.
Look deeper with more curiosity.
Look all about ourselves with the intention of seeing beyond our miniscule existence.
It helps me to take stock and reflect on the conversations with those I walk alongside at the end of my day and week.
I have listened to talk of dear friends of old.
A wish to see them before they die.
I have listened to wishes of being buried under a tree as we laid to rest, under an aged and gnarly apple tree, an injured pigeon we found.
One that took it’s last breath as we tenderly carried it home.
Talk of death.
Of burial.
Of lining the grave with leaves and hedge trimmings and back-filling it before decorating the top with fallen leaves and a few flowers from a pink geranium that’s preparing for the long winter ahead.
I have listened whilst someone shared about a fractured relationship.
Talk of insufferable physical pain and of how exhausting it is to be endlessly trying different medications to ease it.
A reminiscence of a life well lived. A life with imperfections and sorrow just as it is for all of us mortals.
But a good life all the same.
Talk of play and joy as we sang the hokey cokey.
And where we sat back in our chairs and and sang gently along to Joni Mitchel.
It’s a humbling experience to be leaning into love and life with those approaching the end of theirs.
Learning about their clouds.
Their love.
Their life.
And reminding myself how very little I know about love and life.
How very little any of us know about love and life.
Years ago, in the 1990’s, whilst working at one of the children’s hospices, I had an experience which had a profound impact on me.
An experience that stroked my heart with it’s wisdom whilst simultaneously undressing me and laying me bare to the immense grief of a mum, dad and sister who had just had their lives implode following the death of their son and brother.
I was visiting a family whose adolescent son had recently died at home after a long illness. This young man had been visiting the hospice for respite for a few years and I, and other members of the team had built a lovely relationship with him.
On this visit to the family home, just 2 days after his death, the family shared with me, in detail, the final hours and minutes of their sons life.
It was not easy listening for someone in their 20’s.
But it was, for me, one of the most important and profound lessons in presence and listening.
Even to this day I remember where in their living room I was sat, who was present and where they were sat, how I was sat, who spoke and who sat silent.
I didn’t ask them for such a deep share. I didn’t probe.
I just showed up.
And provided the space and right conditions for them to feel safe and held.
I was the buffer. The cushion for alleviating some of the shock and a space where their intense grief, pain and suffering, their new reality, could meet the world outside of that.
I listened.
We held hands.
We hugged.
They needed to say it out loud, for their sons final moments to be acknowledged in this way.
And they needed me to hear their grief. Their pain.
Just one of the valuable lessons I took from this was that we are all buffers. Whether we are aware of it in the moment or not.
Where our grief (and everyone is grieving in some way), trauma and suffering meets the world.
Where someone’s pain and sadness meets your smile, your compassion, your kindness.
No one wants to be in this club. It is a grief that not one of us who hasn’t experienced it can ever imagine.
Whether your child died in the womb, as an infant, teen, adolescent or adult the grief is immeasurable.
Neugeboren said – “A child that loses a parent is an orphan. But there’s no word for a parent that loses a child. That’s how awful the loss is.”
If you are a bereaved parent it’s ok to talk to and about your child. It can help you continue to feel connected to them. If you wish celebrate, pay homage to or attend to yourself kindly when significant dates come round (birthday, diagnosis day, date of death, funeral day). Mark these significant days in a way that supports and feels right to you. Including them in future events too honours their memory and can be a powerful way to bring them closer when the passing of time makes them feel so far away. Maintaining these bonds is not only healthy but can bring huge comfort and ease in a grief which is ever present.
Caring for someone at the end of life or facing end of life yourself can be a pretty daunting experience made more so when we don’t know what to expect.
And, to be fair, there’s is a lot about end of life that we don’t know.
But when we can familiarise ourselves with what we do know it can really help to alleviate some of that fear, concern or stress.
The active phase of dying is the final stage of the natural process of bodily functions slowing down and/or ceasing. It’s important to understand what to expect and to learn the signs of active dying, but it’s also important to keep in mind that predicting when death will occur is still difficult.
Keep in mind that everyone is different and don’t always exhibit all the signs.
So, here are some of the physical signs you might expect when someone is actively dying.
Breathing – will slow and, if you are fully present, you will notice that their breathing becomes irregular. This is known as Cheyne-Stokes breathing. There will be little spaces between each breath and these spaces will get longer and longer. You will be wondering, each time, if this is the last one. Breathing also becomes shallower. You may notice a rattling sound on the breath and in the throat which can be quite scary or uncomfortable to hear but it’s a perfectly normal part of the process and doesn’t usually cause discomfort to the person dying. More discomfort for the people listening to it! This is sometimes know as the death rattle. It might help to position your loved one on to their side to aid in the draining of any fluids if it is triggering coughing or choking episodes.
Skin can become blotchy – the blotches are usually pink or bluish in colour. The extremities such as the feet and hands might take on a bluish tinge. Their body might feel cooler but it might also feel very warm to the touch. If you suspect a temperature you can try to make your loved one comfortable by doing all the things you would usually do such as a cool flannel or removing layers of bedding. The important thing is to keep your person as comfortable as possible.
Eating and drinking – your person’s hunger will diminish. This is all perfectly normal so try not to force or encourage your loved one to eat – honestly, it won’t make them live longer but it may cause extreme discomfort as their body is shutting down and they are excreting less.
Bowels/bladder – linked to eating and drinking. As the body shuts down that includes ALL bodily functions so you may notice them passing less (or no) urine and faecal matter. In laymen’s terms peeing and pooing will stop.
Wakefulness/sleepiness – your person will spend increasing amounts of time sleeping. Only waking for brief periods until they lapse into unconsciousness.
Your loved one will become less responsive.
Until their last breath is taken you won’t know it was their last breath.
Take your time to be with them for a little while longer.
There is no hurry.
Linger – I love this word.
Linger until you are ready to leave their side.
As much as we wish it not to be so there is an amazing transformation happening during the active dying phase. Ultimately, trust that the body knows exactly what it is doing. It knows how to shut down. It knows how to die. Our bodies are amazing!
And just a reminder – your loved one or you may not experience all of these signs. Everyone is different and it doesn’t mean anything is wrong.
I have only touched on the physical aspects of dying in this post.
I will talk about other aspects such as agitation, confusion and other aspects of behaviour, emotion and what your loved one might see or hear in another post.
Four years ago today I completed my training as an End of Life Doula with the University of Vermont Starner College of Medicine and it’s had me reflecting on how these past 4 years have unfurled, memorable moments, how I’ve been touched by this work and where I’m at now.
Completing training and setting up during the first lockdown.
May 2020 The Holistic End of Life Doula (The HELD) is birthed.
Working on the bank of staff as a nursing auxiliary at my local hospices (both adult and children’s) during this very, very challenging time.
Weaving all of my skills into my doula role.
Meeting with family members to discuss, at their request, VSED (voluntary stop eating and drinking – which probably wouldn’t even need to be a thing if medical aid in dying was legal).
Seeing the dire need for decent, specialised care in the community at the end of life and stepping into that role to extend my services as a palliative and end of life PA so that people can have their wish to die at home fulfilled.
Navigating and learning of the various deficiencies and disjointedness within our current healthcare and care system,
Helping people complete their Advance Decisions, Advance Care Plans and Lasting Power of Attorney’s whilst they are still well AND in times of ill health.
Holding public workshops on how to “be” with and support people at the end of life.
Being present for lots of tears, laughter, anger, overwhelm, grief and love and everything in between.
I have visited funeral directors and green burial grounds.
Made my own burial shroud with advice from a funeral directors that I respect followed by the approval of The Natural Death Centre UK for listing my shrouds for others to purchase.
Served as a companion animal end of life doula.
I’ve witnessed my own triggers and weaknesses.
Reconfigured my own boundaries.
Have learnt that my own self care isn’t indulgence but vital to how I show up for others. For you.
Noticing that, within the end of life and, specifically, hospice and funeral services, there continues to be a lot of gatekeeping.
Where some are excited and welcoming to the presence of a doula and others feel threatened.
And that says so much more about their own insecurities than it does about us doulas.
St Christopher’s Hospice in London. worldwide trailblazers in palliative and end of life care recently advertised a salaried role for an End of Life Doula. It’s progressive and wonderful and I look forward to other hospices following their lead in the not-too-distant future.
Working on my latest project – Bringing Death To Life.
Walking alongside people who lean into it all and openly talk about death and dying to those at the other end of the scale who choose not to talk about such matters even in the process of dying.
Meeting people where they need to be and that might be different for each member of the family.
Listening.
Listening.
Listening.
Leaning in.
Witnessing breaths.
Witnessing life.
Witnessing death.
Witnessing sorrow.
Witnessing people fall apart and witnessing them picking up the pieces to carry on.
Witnessing such resilience.
Witnessing the uniqueness of each and every one.
Witnessing myself in highly charged environments, in profound moments, in the beauty and ugliness of it all and how I emerge knowing that I am still a student of it all.
How I emerge a slightly different person than I was before that encounter.
That death is the biggest teacher and holds the most wisdom.
Because we can never know all there is about life, death and everything that fills the space in between.
That, when I am “walking you home” I’m not necessarily talking about death being your final home or walking alongside you as you die even though that is exactly what it appears to be on the surface..
Or as you shift from the physical form that we know and love to universal matter that is more felt than seen.
The act of dying brings us home to our self like nothing I have ever witnessed before.
As death comes closer, the profoundness of life, the sanctity, the true essence of what is and is not important explodes and implodes into our awareness.
It invites us to unravel.
It invites us to shed layers of programming and conditioning.
To be curious.
Some resist it.
Some ride with it.
I am walking you home to your self.
The stripped back you.
The you that longs to be seen, heard, acknowledged, understood and loved.
The you that longs to forgive and be forgiven.
The you that wishes to find comfort with neither forgiving or being forgiven.
The you that longs to say the stuff that you’ve never got around to saying.
The you that seeks comfort when the opportunity to say these things to the important people in your life does not arise in the way you wished.
The you that wants to shout about the unfairness of it all and the you that is accepting and gracious of the life you have lived.
I walk alongside all of the emotions that arise and with the honesty that you seek.
I am walking you home to loving your self like you’ve never done before.
And those parts of you or your life that you can’t love?
Well, I am walking you home to acknowledging that and finding a way of being ok with not loving those parts.
Holding those parts of you with the tenderness you deserve.
Because when all the crap of life is set aside, cast away what is left is just the purest, unadulterated and complete you.
We don’t die perfect.
We die whole.
I will forever be deeply grateful for this training.
Not just for how it supports me in serving others as a doula but also for the richness it brings to my own life.
Getting intimate with dying and death, far from being morbid, defeatist, joy-depleting or whatever you might believe, is utterly life affirming, profound, enriching and heart-expansive.
I’ve come a long way since my first dive into end of life care in the early 1990’s. Both Quidenham Children’s Hospice and Rachel House in Scotland are intricately woven into the tapestry of my heart and soul.
And that, my friends, is a synopsis of my doula-ship so far.
It is ever evolving.
As am I.
What a gift it is to hold such open curiosity to the true mystery of it all and to be reminded how to live a life of richness, depth and meaning.
Thank you for being part of my continuing journey.
I am so grateful you are here and sharing it with me.
Today sees the start of Dying Matters Awareness Week and the theme for this year is “The way we talk about dying matters”.
So, I’m going to kick the week off by talking about the euphemisms we use in order to avoid using the word “death”. You can tell a lot about a culture by looking at the words and phrases they use in place of death and dying. It doesn’t help that we have become so far removed from the dying and death due to it’s medicalisation over the years and the gate-keeping of funeral directors (I’m glad to see this now slowly changing).
So here, as an example, is the Monty Pythons Parrot sketch which is a classic in death euphemisms. “This parrot is no more. it’s expired and gone to meet it’s maker. This is a late parrot.”
Do we feel that alternative words are softer or less final? Sometimes it’s as if the words “dying” and “death” get caught in the throat and out tumble the euphemisms in it’s place.
Here’s the thing – death is not a dirty word or a negative word.
Not to mention some alternative words to death have been known to cause confusion such as “lost” or “gone” especially to children.
The way we communicate about dying and death is important. Death is a natural part of life and normalising the words can help not only take the fear out of what we will all experience but provides clear communication and an invitation to contemplate and discuss the realities of simply being alive. It shifts us towards ownership of it. Bringing dying and death back home to ourselves and to the community.
Death hasn’t always been as taboo a topic as it is today.
Feel free to share your thoughts or perhaps you have used or heard a death euphemism not listed here?
Bit the dust Become worm food Gone to heaven Six feet under Passed away Meet your maker Breathe your last Went to a better place Pushing up daisies Taking a dirt nap They lost the battle with ………… Carked it They’re at the pearly gates Kick the bucket Shuffle off this mortal coil Popped their clogs Gave up the ghost Called home. Called back to god
In a professional capacity I don’t use euphemisms for death. Die, dying, dead, died, death are part of my professional vocabulary. I don’t sugar coat it, swaddle it in bubble-wrap or put a screen up around it. That is not helpful to anyone.
And yet, at my celebration of life or funeral, my mischievous self would like my death described as all of the above. Perhaps I’ll instruct a ticket be left on everyone’s chair and they have to call it out – like a register of arrivals. Or, I’ll instruct matching pairs of euphemisms to be left randomly on attendees chairs and midway through or at the end of the service everyone has to mingle and find their matching pair and, maybe, share how they know me or share a hug?
Well, now I’m getting carried away. If you have a favourite euphemism what is it?
Encompassing the End of Life Doula, the Soul Doula, Soul Midwives and Deathwalkers.
So, you want to be an End of Life Doula?
I sometimes get emails from people interested in offering this service so what does it take to be one?
Well, let’s first begin by telling you that if you’re looking for an occupation that will make you financially rich or even financially comfortable then this isn’t for you.
It will, however, bring a richness to your heart and life that is priceless.
If you need an income appreciate that you will have other work running alongside being an End of Life Doula.
As a Doula you will be invited into life’s most profound, intense and humbling experiences.
Do you need to have experience in end of life care before training?
Not at all.
What’s most important is your propensity, willingness and ability to love, to hold space and listen deeply. Humility is absolutely essential in supporting the dying – we can’t and will never know it all because each and every one of you are unique.
Can you advocate for others sometimes in the face of opposition?
Are you resourceful? It really isn’t as simple as sitting at the bedside and holding a hand.
Can you trust the dying process and can you trust that your companion knows what is right for them?
Can you remain grounded and present when grief, suffering and overwhelm shares the same space?
Can you lean into that suffering?
Be absolutely present with it?
Are you resourceful? It’s not a matter of tending passively but digging into your resourcefulness when needs arise.
I strongly recommend that you DO gain some experience in being present with the dying either through working/volunteering in a care home or hospice. Caring for someone who is a relative or friend is very different to companioning a family that you don’t know at the end of life. Although, indeed, they will feel like family very quickly.
Some people come to this field who already work in healthcare such as doctors, nurses, social workers and healthcare assistants and some work in the holistic services but equally there are many from other areas of work who simply feel called to this.
Be prepared for the training to be deeply reflective.
A place where you will likely touch your own grief and suffering.
Be prepared for the practice of doula-ing – the practice of deep listening, holding space, humility, presence and tender loving to be ongoing. They are not skills that we reach the pinnacle of and stop but ones that require us to consciously practice. We are human and whilst practicing these skills we get to recognise where we could do better.
And be prepared for the dying to reveal to you that they are the biggest wisdom holders of all time.
It’s time for a refresher on what active dying is and what it might look like.
Caring for someone at the end of life or facing end of life yourself can be a pretty daunting experience made more so when we don’t know what to expect.
And, to be fair, there’s is a lot about end of life that we don’t know.
But when we can familiarise ourselves with what we do know it can really help to alleviate some of that fear, concern or stress.
The active phase of dying is the final stage of the natural process of bodily functions slowing down and/or ceasing. It’s important to understand what to expect and to learn the signs of active dying, but it’s also important to keep in mind that predicting when death will occur is still difficult.
It will happen anywhere between 2 weeks to just a few hours before death.
Keep in mind that everyone is different and don’t always exhibit all the signs.
So, here are some of the physical AND non-physical signs you might expect when someone is actively dying.
Breathing – will slow and, if you are fully present, you will notice that their breathing becomes irregular. Sometimes there’s rapid breathing before it starts to slow. There will be little spaces between each breath and these spaces will get longer and longer. You will be wondering, each time, if this is the last one. Breathing also becomes shallower. You may notice what looks like a gasping for air – this is natural and nothing to be concerned about and the person knows nothing about it. You may notice a rattling sound on the breath and in the throat which can be quite scary or uncomfortable to hear but it’s a perfectly normal part of the process and doesn’t usually cause discomfort to the person dying. More discomfort for the people listening to it! This is sometimes know as the death rattle. It might help to position your person on to their side to aid in the draining of any fluids if it is triggering coughing or choking episodes. All of these changes are natural and expected and is not thought to cause suffering.
Skin can become blotchy – the blotches pink or bluish in colour. The extremities such as the feet and hands might take on a bluish tinge. Their body might feel cooler but it might also feel very warm to the touch. If you suspect a temperature you can try to make your loved one comfortable by doing all the things you would usually do such as a cool flannel or removing layers of bedding. The important thing is to keep your person as comfortable as possible.
Eating and drinking – your person’s hunger will diminish. This is all perfectly normal so try not to force or encourage your person to eat – honestly, it won’t make them live longer but it may cause extreme discomfort as their body is shutting down and they are excreting less. The natural process of stopping eating and drinking sends their body into ketosis which makes them feel good and diminishes their urge to eat or drink.
Bowels/bladder – linked to eating and drinking. As the body shuts down that includes ALL bodily functions so you may notice them passing less (or no) urine and faecal matter. In laymen’s terms peeing and pooing will stop.
Speech – your person may talk about getting their bag ready, finding their passport or tickets. Sometimes this can happen even before the active dying phase too so don’t be surprised or concerned. Just know they are getting ready for the transition.
Muscles – the mouth and eyes will be partially open. Sometimes the mouth hangs wide open. This is because the muscles are fully relaxed. Do you know it takes muscles conscious effort to close your eyes and mouth?
Reaching – you may notice your person reaching out with their arms. This is quite a common phenomenon and is one of the mysteries of the process.
Visioning – this is another mysterious phenomenon. It is where the person dying sees people or things that we don’t. Sometimes it’s dead relatives or friends and sometimes it’s people they don’t recognise. They may tell you that a spouse, parent, grandparent, a dog, sibling is standing in the room, sometimes in the doorway. It usually isn’t unsettling for them but often provides a sense of reassurance. Wouldn’t it be lovely if we knew someone special was waiting to guide us into whatever comes next?
Wakefulness/sleepiness – your person will spend increasing amounts of time sleeping. Only waking for brief periods until they lapse into unconsciousness.
Your person will become less responsive.
Until their last breath is taken you won’t know it was their last breath.
But it does come.
The heartbeat ceases.
But don’t rush off anywhere.
Take your time to be with them for a little while longer.
There is no hurry.
Linger – I love this word.
Linger until you are ready to leave their side.
As much as we wish it not to be so there is an amazing transformation happening during the active dying phase.
Ultimately, trust that the body knows exactly what it is doing. It knows how to shut down. It knows how to die. Our bodies are amazing!
And just a reminder – your person or you may not experience all of these signs or any. Everyone is different and it doesn’t mean anything is wrong.
I’ve written about eating and drinking at the end of life and what that can look like before.
Here’s a recap – your person’s hunger will diminish. This is all perfectly normal so try not to force or encourage your loved one to eat – honestly, it won’t make them live longer but it may cause extreme discomfort as their body is shutting down and they are excreting less.
But….
What do you do when your person is dying and their appetite has diminished but they are still insisting on eating something despite the pain and discomfort it causes them afterwards?
Perhaps we should first acknowledge that dying isn’t always what it looks like in the movies – unconscious, unresponsive, blissful.
It can be.
But there are usually other things going on behind the physical and medical scene.
Sometimes, a person dying can be conscious and aware up until very close to death.
There will be other signs that the dying process has begun and yet, your person feels that they “should” eat something.
And this can be despite them being very aware that death is fast approaching.
This scenario can be complex but ultimately it is the choice of that individual to eat (if they have capacity to make that decision) even when they know it causes extreme pain afterwards. Towards the end there is so little that can be within a persons control and eating might be the one thing that they can.
And enjoy the taste and the ability to eat in the process.
For those of us supporting someone in that situation we can gently let them know that the pain is likely due to eating when their body is trying to shut down. Remember the body knows how to die and it does so regardless of eating or drinking. Having honest conversations can be empowering for the other person.
Equally, your person might not be willing to have that conversation or open to hearing that. Or, might weigh up the situation having had the conversation and decide to eat anyway. And that’s ok.
So, don’t make it into a battle or deprive your person of food.
Instead, find some common ground.
Offer relief in the form of medications – paracetamol, wind relief tablets etc.
Or try repositioning them to see if that will ease their pain or discomfort.
Give them agency over their own body if they are able to make the informed choice to eat.
xx
HELD 