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.
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.
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.
Reflections of time as this year comes to a close and the new one nears.
Our human mind has long grappled with the idea of time.
With clocks and calendars, schedules and the keeping of time.
And, of course often dismissing time as a human construct.
Does time even exist at all?
Time, in some form, shows itself in nature regardless of whether we connect with the idea of time or not.
Times of daylight and moonlight.
The waxing and waning of the moons bringing a regularity of full moons.
The changing of the seasons.
The rings within the trunk of a tree denoting it’s age.
Our circadian rhythms.
The different layers laid down through history upon the earth each revealing of life in that era.
A snapshot of that time.
We think of time as perpetual.
Or infinite.
And our existence is just a moment in time.
A miniscule blip in the ethereal space of the universe.
This life, my life, your life, is this space, between birth and death.
That is our time.
Made up of many, many moments.
When time has passed we cannot get it back yet, sometimes, we try to make up for lost time.
Time is given and it can be taken away.
It is thought that money can’t buy time but living in poverty can shorten our time on this earth.
Time can seem to go fast or slow.
Sometimes it can feel as if time is standing still.
We can “kill” time but we can’t create time.
When we choose to spend our time with another we are offering them moments of our life. Sharing in each other’s moments. What a precious gift this time, our moments are to each other.
When we are forced to spend time with another or doing something not of our choosing is this then a theft of our moments?
For we didn’t give them willingly and we cannot get them back.
Some say we should be present with those moments too but in times of grave depravity our survival instincts may take us elsewhere – to a different time.
Some of our moments in time are etched into our memory and yet others seem lost.
When death is nearing time takes on a different meaning.
We suddenly have a very different relationship with it.
We find there is more time behind us than in front of us.
That we have taken “time” for granted.
Some pray for time.
Time to spend with their loved ones.
Time to say many I love you’s.
Time to make amends.
Time to laugh.
Time for more living.
Some pray that their time is short.
Not necessarily because they don’t love life or the people in their lives.
But because they wish their suffering to end.
Or they simply feel their life is complete and fulfilled.
Some are confused with time.
When death doesn’t happen when “expected”.
I have heard before “why am I not dead yet?
Or, “Why am I still alive?”
And sometimes “why is it taking so long?”
Some may say “How did I get to this moment so soon?”
Some try to “cheat” time by opting for medical interventions with the appeal that it may offer more time and yet, may ultimately affect the quality of their time.
Of their moments.
Time.
It comes.
It goes.
It does not wait for us.
It carries on regardless.
There is nothing more grounding of our moments in time than our closeness to the end of “our” time.
Until our own death separates us from time.
And yet, even then, our essence remains a part of time for as long as we are remembered by another.
Stored as a memory in time.
And remember, whilst many are yearning for this turning of the year into the next, of putting the time of 2023 behind them, others may feel it is taking them further away, in time, from their loved one whose time in their physical form came to an end this year or in recent years.
Those of you who have followed or participated in my teachings of meditation will know that I encourage you to explore different forms of meditation (it’s not about sitting cross-legged on a mat, laying down or emptying your mind), different styles, methods and teachings.
It is not a one-size-fits-all.
And let me tell you here that the aim of meditation is not enlightenment.
Or transcending anything.
It’s about presence.
Your practice will evolve and grow, ebb and flow, shift and change.
And when it comes to meditation in times of deep grief everything you think you know about your meditation practice flies out the window.
Because grief is not just a physical set of symptoms but is energetic too.
And it lands differently.
As it did with me some years ago.
No matter how much I thought I knew and understood about my mediation practice, when I was grieving deeply meditation became incredibly difficult.
Whatever form of meditation practice I was doing all I could do was cry.
Whether I was still or moving, whether my space was quiet or filled with sound every time my practice began I would just cry.
Actually, crying doesn’t quite cover it.
I sobbed.
Consumed by my grief.
And I became frustrated.
Defeated even.
And then I realised –
my tears, my crying, my sobbing was meditation.
And in that moment I was able to let go of what I thought meditation should look or feel like and be present with myself in a very different way.
What a powerful, profound and transformative insight that was for me.
So, if you find your meditation practice faltering or impossible during times of grief give yourself some slack.
And allow whatever it is that you are feeling to flow.
It’s not about emptying the mind, being quiet or still but feeling into your soul.
It’s not about a moving meditation practice that feels freeing and expressive but the ability to hold your body with love as it curls into a tight ball, throws fists at the floor and wails.
xx
xx
HELD 