Navigating Your Emotions When Physical Changes Occur

One of the most difficult things a person might encounter as they support their person through terminal illness and dying are changes.

Changes to the physical body, the emotional state and sometimes the personality too.

Not everyone will experience such significant changes.

But some will.

When we look at the physical changes alone, it’s usually as a result of illness or treatment.

I’m not simply talking about the general bodily changes that we expect to see as a result of the active dying process but the changes as a result of the ravages of treatment such as chemo, surgery and steroids or as a result of the illness itself such as the swelling and yellowing of the skin through advanced liver disease or perhaps even sever weight loss.

The person may look almost unrecognisable from the person you know and remember.

It can be scary and painful to witness that change.

You may even feel that you cannot visit your loved-one anymore as it’s just too traumatic to see them like that – it doesn’t feel like it’s them in their skin anymore.

And that’s ok. It’s normal to feel saddened or distressed by the altered physical appearance of your loved one.

You may feel that your person has already gone.

But they have not.

They are still there.

Under that changed façade, the swelling or weight loss, the skin changes or hair loss, the noisy secretions in your persons

throat and drool on their pillow is the very person who you love so dearly.

When or if you find the courage to visit them know that it’s ok to feel uncomfortable and upset when you see the changes and, if you can, see beyond that outer physical body and look into the heart.

Your person is still there even when they look so very different or cannot communicate with you, recognise you or open their eyes.

They are still the essence of the person whom you loved before these physical changes occurred.

I invite you to touch their skin, hold their hand, stroke their face if it’s tolerable for your person and try to feel beyond the physical changes under your touch. Close your eyes if you feel that would be helpful. Their skin may be cooler, drier, more fragile to the touch, their hand unresponsive and yet, you can let your love be transmitted through that touch from your heart.

It will journey through the touch receptors in your loved-ones skin, and be fast-tracked to THEIR heart.

It can be difficult to know what to say when you feel confronted by these physical changes and yet, I invite you to speak tender words of love and gratitude, recalling fond memories and special moments.

Your person can still hear your words.

They know you are there and that is so very precious.

If this happens to your loved-one and you are struggling know that you are not alone.

Professionals such as myself or hospice can be there to support you.

Whether you decide to visit your loved-one or choose not to both are ok and you will be supported in your decision.

If you wish and are open to the idea, I or another person could relay your message of love to them or we could explore other avenues to transmit the tender love that you feel for them such as a video message, a letter, song, an item of your clothing or telephone call.

Love will find a way to reach them.

Nancy x

Happy Birth-Day To The HELD

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.

❤

Nancy xx

Doula-ing our elderly

You might be inclined to think that an end of life doula serves primarily those with a life-shortening or life-limiting illness.

But here’s the thing.

I can be called upon to support someone aged 5 or someone who is 95.

Those who are elderly don’t need the support of a doula LESS.

Don’t be fooled into believing that they are prepared and ready to die.

That their needs are any less.

In fact, sometimes they need that extra support all the more.

To advocate for them, ensure all their documents are in order, to provide dignity, companionship and connection, to have those difficult conversations with them that relatives and friends find so difficult.

But most of all to tend to the soul, the love, the regrets, the frustrations of life and of getting old.

Besides, there is so much living to do in those final days, weeks, months and years.

Please don’t assume that your elder relative doesn’t have any end of life wishes just because they are old, forgetful, frail or stuck in a hospital bed.

Oh, my dear, this is all the more reason to honour their humanness and spirit.

This doula is here for you all. ❤️

Nancy xx

Twas THE Night

Twas THE Night.
Written Christmas Eve last year.
Well, perhaps not the poem you expect to read on Christmas eve but, as it is based loosely on The Night Before Christmas, I thought to share it. It’s the story of a gentle welcoming of end of life in the presence of a doula.

Twas the night before death, when all through the house
Not a creature was stirring, not even a mouse
My heart it was heavy, this sad night of the year
I hoped that the doula soon would be here;

My beloved was nestled all snug in his bed,
While visions of ancestors danced in his head;
With me in my grief, holding a hand in his lap
My love settling down for a long final nap,

When out on the path came footsteps heard before,
I crept swift from the bedroom and unlatched the door
Not wanting to leave my beloved for long
I feared when I got back I would find he was gone.

The moon barely visible behind the clouds of my heart
Was aware of the soul that was about to depart,
Then, what to my woeful eyes should appear,
Twas the end of life doula, and her heart so dear,

Our doula spent a few moments sensing all that was here
The anxiety, the love, the grief, the fear
Then she took my hands and invited a pause
Then said “Let’s be still, let’s be still, witness these moments with awe”

With a hug, a kind word, so soft and so pure,
I knew in a moment we were held safe, reassured.
More rapid than eagles when I phoned she came,
And she greeted, with love, my beloved by name;

Within this familial space – I felt so blessed
As together we prepared the sacred death nest,
Candles, a poem, his favourite music we played
We plumped up his pillow for his head to lay

I shared memories, told stories, sang songs that he knew
Provided moments of silence for him to explore new realms too
My doula she noticed my face it was frowning
She uttered words of support to ease me from drowning.

She kept me supplied with refreshments as needed
She checked my beloved’s wishes were heeded
My doula stepped in when I needed to sleep
A presence at bedside, a sacred vigil to keep.

In each precious moment I watched my beloved’s chest rise
As the light slowly dimmed in his tired brown eyes
His breathing now shallow, the timing slow.
Gave an intensity, a lustre for my focus to grow

As his body shut down my loves throat started to crackle
The doula she said it’s sometimes called the death rattle.
Blotchy mottling had appeared on my beloved’s skin
I can’t help but wonder of the bodily processes within

My love – his hair laid ruffled, his eyes partially closed,
His cheeks deeply sunken each side of his nose
His mouth showed wrinkles where once there were smiles
His jaw hung loose as if asleep, my heart in denial

As his physical life faded, his spiritual energy grew
This subtle glow it encompassed him soft and true
We welcomed it warmly, we knew he was frail
He was almost ready, to step through the veil.

When with a movement of his head in spite of his health,
He turned to look at me wisely, shared a moment of himself
With a twinkle in his eye and a nod of his head
He gave me to know he had nothing to dread

He spoke not a word, but closed his eyes,
And the room filled with awe that we just can’t describe,
And laying my face close to his where he lay
He gave a last sigh, and went on his way;

We stayed there bearing witness, nothing to do or say
Holding each moment tenderly ’til the new day
And as the sun began to rise on the fresh new morn
I knew a different me had just been born.

The touch of his hand, his skin cooler now
I stroked him tenderly across his brow.
In accordance with my beloved’s last wish
He stated clearly, he wanted one final kiss.

Then his spirit it rose, making ready to pass through,
He lingered for a while, then, away he flew
But I heard him whisper, ere he drifted out of sight,
I love you deeply, and I wish you goodnight.

I hope this poem touches you softly

With love ❤
Nancy 24/12/22

Art by David Yan