Love at the Bedside

It was Valentines day on Monday and I was reflecting on how love might present itself at the bedside of the dying.


So here are my thoughts…..

Love is in the moisturising of their dry lips.
The wipe of secretions from their mouth.
The tender washing with the softest of cloths of their face and hands.
The gentle brushing of their hair.

Love is in the sponge mouth swabs that ease the dryness.

Love is in the way your hands touch those of your dying loved one – the way you feel their knuckles and the soft bits of skin between the fingers, the caressing from the wrist to the fingertips and the stroking of the palm.

Love is not touching when it cannot be tolerated despite your yearning to feel their skin against yours.

Love is in that gentle hand hold that ushers in a sense of support – I’m here with you.
It’s there when you lay your head next to theirs, close your eyes and just feel their presence.

Love is in your gaze as you look at their changing body yet remember times of vigour and youthful energy.

Love is listening to the rattling in their throat, the groans of discomfort and confused mutterings without walking away.

It is turning towards their suffering and letting them know they are not alone.

Love is in the words that you share.
It’s in the conversations that you have even when there is no reply.
It’s in your singing.
In your humming.

Love is in the reading of their favourite books or poems.
Love is in the music that you play for them.
The music you know they enjoyed when they were full of vitality.
Or the music that you know brings them comfort.

Love is knowing what tv program or film to have on in the background.

Love is knowing when silence is necessary.

Love is in the soft kiss of the lips, cheek, forehead or hand.
It’s there as you linger in that kiss trying so hard to imprint this moment of tenderness into your memory.

It’s in your vulnerability that encompasses these very moments..

Love is in your sighs of grief.
In your gentle sobs of sorrow.
In your sense of relief that any suffering is coming to an end.
In your smiles too as you recall memorable times.

Love is in the shared air that you breathe.
Their final breaths become your first breaths in your ever-changed life.

Nancy

As I Die

Grab a cuppa and a quiet 5 minutes. Or 10 if you want to reflect a little on my words. I closed my eyes and said these words to myself – “As I Die” and what followed is this.


As I Die

Don’t tiptoe around

or busy yourself with tidying.

Don’t fuss or stress.

No need to constantly

straighten my bed.

Bake bread and cakes

And waft the scent

around the house.

Bring your baking into my room.

And eat.

And allow yourself to enjoy it

as we enjoyed eating cake together.

Enjoy it for me.

Put on some music

although not too loud

of bands I enjoy.

My love of music does not diminish

because I am dying.

Feel free to sing along

and if you wish

to dance too.

Sit by me with your cup of tea

or drink of choice

and just be yourself.

Talk to me

as you always talk to me.

No need to be serious or solemn.

Share funny stories

of recent times.

We can still laugh

and giggle together

as we always have.

Tell me what is happening

with the weather outside.

A topic we laugh at

and take for granted.

Yet,

it is something I can’t access right now.

Can you describe

what you see outside

even if I too can see it?

Without attaching your opinion to it?

The description is all I need.

Go outside – just for a moment

Experience it first hand

Feel the weather on your face

In your hair and on your body and clothes.

Then come inside

and describe what it felt like

in as much detail as you can.

For I miss those simple things.

Put your warm hand in mine.

Hold it gently.

I can feel the love

transmitted from your heart to mine

through this tender touch

of your hand.

It’s ok to brush the stray hairs

away from my face.

The feel of your fingers on my face

is a reminder

of tender, loving times.

Allow your fingers

to linger there.

Soothing.

Comforting.

Ask me how I am.

Ask me what it’s like to be dying.

Don’t project your fear

of my death onto me.

Don’t tell me how scary

it must be.

Don’t tell me how awful it is

Or assume I’m sad.

That may be how it is for you

but I may be experiencing it

differently.

Just look into my face,

and into my eyes.

Explore what is there.

See beyond my illness,

beyond my frail body.

See the person

me

inside.

And ask

“What matters most to you right now?”

And say my name too

“What matters most to you right now ……..?”

Make it personal.

As my body is fading

help me feel human and real.

And listen.

Your ears and heart are perfect for this.

They were made for this very moment.

Listen.

Not with the intent to reply

to understand

or wonder why.

But simply to hear.

I have few words left.

My voice is weakening.

Just listen intently

as if each word was my last.

Let my words touch your eardrums

as if wishing to leave an imprint.

Drink it all in.

The tone.

The whispers.

The sighs.

The movement of my mouth.

Don’t be tempted to fill in the blanks

or finish my sentences.

Don’t tell me that my answer

to your question

is wrong or misjudged.

Don’t tell me that other things

should matter more.

Don’t turn my words

into something they are not.

You don’t have to understand

or agree with my response.

Just listen.

Don’t push

your own ideas of death

onto me.

Let me have my own beliefs.

Let me own this experience.

For it is mine.

I will never get another.

You will get to experience your own

in time.

Don’t be tempted to relay death

stories of loved ones or friends.

Don’t take this experience away from me

to make it yours.

Just walk alongside me.

Walk me home.

And, if my words

are not forthcoming

Just listen with your heart.

To the moment.

To each moment.

To my breath.

To any crackles in my throat.

To the worldly sounds

that share in this moment.

Don’t say “I’m sorry”

Instead say “I love you”

Say “Thank you”

Share joyful or tender memories.

Relay stories of our times together.

Tell me that it’s ok

for me to leave when I am ready.

Don’t beg me to stay.

The parting will be so much harder.

Tell me you will be ok.

Tell me that you will

all look after each other.

Tell me that I will be ok.

That it is safe to go.

That I can take your love for me

for support and guidance.

And that the love that I have shared

in my lifetime

will remain forever

in the lives I have touched.

And when my eyes are closed

look into my heart

with yours.

And feel what is there.

These precious beats

of my heart

that is getting tired,

slowing.

And

when my heart stops

know that our bond

will remain.

That it has no borders

or edges.

In those moments

when my last breath

has left my lungs

linger by my side a little longer

as I transition

from this life.

And,

if there is anything you wish to say

that you couldn’t say

whilst I was living

say it now.

For the part of me

that remains in your heart

will hear those words.

And you will notice

a tiny flutter in your heart.

That is me.

Nancy Nudds 03/12/21

Rather then being a reflection of my own wishes (there are elements of them in there too) I wanted it to provoke thought and conversation. To weave in subtle layers touching different angles dying and death might be experienced. From the perspective of the person diagnosed with a terminal or life-shortening illness to that of their loved one/s who are supporting them and all the people who might come into contact with someone at the end of life.

A guide.

A support.

What also transpired was that it is also comforting to those who have cared for their loved one, family or friend at the end of life including those working in a health care setting.

However this “As I Die” lands with you please take what you need from it.

This moment matters

This moment matters.

So, here’s the thing. When times are hard we would do anything for them to be different.

Never more so than at the bedside of a loved one who is dying. We want to fix it, take it away, for it not to be happening. We can be in denial that they are dying. We so want to heal them, make them better. And that is a perfectly normal reaction.

And yet…..

Whilst we are busy wishing things were different for our loved one we are not able to give the best of ourselves. We are not able to be fully present with what is.

With them.

For them.

And for us to be completely present we have to radically accept the situation as it is and not for how we wish it to be.

It’s shit – I get it.

Yes, it can be excruciatingly painful.

Stay there anyway.

Why ?Because this moment matters.

I have seen people so overwhelmed at the bedside because their thoughts are full of fixing or wishing it wasn’t happening that they have missed a most beautiful opportunity to spend quality time with their loved one.

So how can we shift into a practice (and it is a practice!) of this acceptance and be more present with our loved one?

You can try this 👇

Take a few long, slow breaths and acknowledge your thoughts about wishing it wasn’t happening and, perhaps, say something like this to yourself “I wish this wasn’t happening but it is. How can I “be” with you right now?”

And let everything about each moment arrive.

The sounds.

The surroundings.

The image in front of you of your loved one and the details of their face and hands.

Their breathing.

Drink it all in.

Whatever is happening and however different they may seem to you they are still your loved one.

Notice the feel of your loved ones hand in yours.

The structures of the hand, the temperature, the softness of their skin.

Hold their hand to your cheek.

This moment matters.

It’s difficult but stay there anyway.

If you lean in for a kiss on their cheek, forehead, lips or hand notice the smell of their skin, the temperature and softness, the grooves and fleshy parts.

Allow your senses to be fully open and let everything arrive and touch them.

Without judging what arrives, trying to change it or forcing anything.

Speak gently if you wish but don’t feel that the quiet moments have to be filled with words.

Your presence is all that’s required.

Your loved one will know you are there.

This moment matters.

It’s difficult but stay there anyway.

And when you notice your mind drifting away into thoughts of regret or helplessness offer yourself some compassion and return your attention to your loved one in this moment.

This radical acceptance is not easy to practice.

But practice it anyway.

Because……………………

this moment matters.

I hope this reaches whoever needs to read it.

With fondest love as always

Nancy ❤ xx

A Touch of Death and an Easing into Grief

“Don’t brush my hair when I die.

Don’t bathe me.

Wrap me in my favourite blanket and put me straight into the dirt.

Throw in flower petals and dog hair and pour wine all over me.

Let me die free and messy.Subversive and relentless.

A wild seed.”Columbus Deathcare Community

My daughters and I have many conversations on dying and death. They are open-minded, honest and open-hearted conversations. Not in a morbid way but deep and meaningful, with curiosity and fascination, often with humour and always with love.

My eldest daughter and I recently got onto the topic of the care I would like to receive AFTER my death. I can’t even remember how we ended up talking about this but we let the conversation flow. I’d be quite happy to be placed straight into the soil as I died – unwashed and unkempt. And yet, what I have asked for is that my daughters gently, mindfully and with tender care wash my hands and face. Not that I need to be clean for burial or whatever follows next – I’ve never died before so I like to keep an open mind. But to use it as a ritual to support them in their grief, to aid acceptance of my death and a loving ceremony of saying things left unsaid, of goodbyes.

That caring, intimate touch can be such an important aspect of saying goodbye or even thank you.

A final loving gift for us all.

The flower petals and dog hair would be a nice touch too.

Many cultures and faiths have a ritual of washing the entire body and dressing after death. And not so long ago it was commonplace here for family members to tend to the body of a loved one after death. I wonder at what point in our recent history we decided to hand it over to undertakers? In relinquishing the care of the dead we have lost touch (pun intended) with that intimate, tender care that can be so healing in times of grief.

Let’s talk about this more.

To break the stigma and in doing so alleviate or break the pattern of fear surrounding death.

When Grief Isn’t Restricted To Human Loss

Where I live, in a beautiful village called Marsden in West Yorkshire, UK, there has recently been a wildfire that has devastated a large area of the moorland..

I became aware that the people who live here, including myself, and those that care deeply about these moors, the habitat, wildlife and environmental importance of this special place were experiencing this terrible event much like the illness and death of a loved one.

In fact, just for a moment, visualise these moors AS a loved one.

Very much loved, cared for and a huge part of everything we hold dear living here.

There was the initial shock, with anger (and lots of it), denial, fear, frustration, bargaining and the feelings of helplessness alongside people rallying together each finding a way they could help.

You see, people like to help in times of crisis.

Not only asking how they could help but also taking some initiative after assessing where best their assistance might be needed whilst also not getting in the way of the important work required at the front.

Seeing the professionals come in and caring for our loved one and hoping that they can ease the suffering.

There were concerns for the courageous people dealing first-hand with the event.

There was also the anticipatory grief. When it started, although the area started off small, it was clear that it was going to be significant, widespread and catastrophic due to the conditions.

Knowing what’s coming and being helpless to stop it.

There were tears – lots of tears.

Not just for the physical deaths occurring (in terms of wildlife) but also for all the deaths associated with such a big event.

We were, in effect, all sitting vigil to that loss of life.

People know that, in time, the area will see recovery but they also know it will not be the same.

They will try to make sense of it all. The life destroyed can’t be replaced with like for like. A death is a death – unique in it’s own right.

And although the people of Marsden have experienced an event like this before it doesn’t get any easier with subsequent similar events.

In time, there will be acceptance. The high emotion will dissipate and the life of the villagers will resume as it was yet what they experienced with their senses will remain in their memory.

In the next few days or weeks when the area is safe to return to I plan to head up onto the moors to hold a small ritual. I don’t know what that will look like right now but it will be one of collective grief, a silent sorrow alongside the gratefulness for all that mother nature provides. Rituals are helpful for processing events, remembering and holding a compassionate presence for those that have died. Perhaps there will be evidence of regrowth and rebirth to celebrate too.

I hope it has provided some reflection on how we grieve and experience death in many ways, how everything is all connected and, perhaps, validated some of emotions that you have felt during your own life events.. ❤

Photo is of the Wessenden valley and moors of Marsden in more lush days.

Tender Moments

Recently I spoke about intimacy at the end of life and I mentioned eye contact which reminded me of an experience I had when caring for an older lady with end stage dementia which I thought I would share with you.

On one particular day I was sat beside this lady as she lay in bed, holding and stroking her hand.

Between moments of confusion, anxiety, restlessness and sleep she turned her face towards mine and our eyes locked.

We held each other’s gaze for several minutes.

Neither of us spoke and I remember noticing the gentleness and loving in her eyes.

We held that gentle gaze for a while until she said “Thank you” and as I smiled and thanked her in return she lapsed back into confusion and restlessness.

This moment of tenderness was such a stark contrast to just an hour earlier where, at the sight of me, she screamed in terror wondering who I was and why I was there.

For me, in the moment where our eyes were gazing at each others, it felt as if we were sharing a deep part of ourselves that couldn’t be reached any other way – it was quite profound.

Water, Life & Death

Some fascinating reflections about water.

  • Our body is roughly 60% water.
  • In some organisms water makes up 90% of their mass.
  • All parts of our body need water in order to function optimally.
  • When we die the water content of our body returns to the earth either directly through burial or as water vapour following cremation.
  • Now consider the cycle of water.
  • Travelling from the earth’s surface back into the atmosphere.
  • Falling as rain, sleet, snow or hanging in the air as fog or mist.
  • Flowing in rivers and streams.
  • Running into the sea, reservoirs, lakes and ponds.
  • Nourishing us.
  • Nourishing nature.
  • Water is life-giving.
  • Returning once again to the atmosphere.

I wonder how many life forms the water that we interact with daily has passed through?

Are you in a Good Place To Die?

In conjunction with Dying Matters Awareness Week which runs from the 10th – 16th May 2021 I invite you to an open, honest and loving conversation about what being in a “Good place to die” means to you.

I’m Nancy, an End of Life Doula based in Yorkshire, UK and seeing how unprepared people are I feel it’s vital that we find ways to get the conversation started.

Along with Dying Matters our aim is to raise the profile of the care that does exist and the benefit that it gives to dying people and their families.

And we want to raise our voices to highlight what needs to change for people at the end of life.

“Where people die is changing. More people than ever are dying at home, and the pandemic has accelerated this trend. In 2020, 28% of people in the UK died at home.

With gaps in support structures for people when they die, and for those that are left behind, people are dying without being in the right place. Often, people don’t feel prepared and they haven’t fulfilled their wishes or communicated them to loved ones.”

This event will begin with a short presentation from me and I will then create a space for you to talk about what being in a good place to die means to you – physically, emotionally, psychologically and spiritually and what you can do now to prepare for that.

This event will take place on Zoom with 2 dates Tuesday 11th May 2021 7-8.30pm or Saturday 15th May 2021 10.30 am – 12 noon (I may add more if there is sufficient interest).

Make yourself a cuppa and come and join in this informal and life-affirming discussion.

Please register your interest by selecting which day you wish to attend from the selection below or register with me at nancyendoflifedoula@gmail.com

You can also visit the Dying Matters website here https://www.dyingmatters.org

Intimacy at the End of Life

There is a lot of overlap in the various work that I do and I would like to share with you one such overlap.

It involves my work as a Compassionate Touch and Cuddle Therapist and as an End of life Doula and relates to intimacy at the end of life.

The professionals and care teams supporting people at the end of life can often overlook this concern, not through a neglect of duty, but mainly due to their need to focus on symptom management and couples can be reluctant to raise the issue.

As a person’s health changes so do the dynamics of intimacy.

Changes in body image, the control of bodily functions, pain, nausea, catheters, a lack of sexual desire or even just the sheer volume of people coming and going etc can all play a part in navigating intimacy at the end of life.

Whether this is as a result of medication, disease or aging the need or wish for intimacy for both partners can remain strong. Closeness is an inherent human need and this does not change as the end of life draws near.

There are so many ways to experience tender, loving, intimate touch at the end of life – stroking, spooning, kissing, massaging, eye-gazing, cradling and laying heads close together. Couples can lay naked together too if the setting allows – skin to skin contact is a powerful antidote to stresses, anxiety and pain at the end of life.

If the person is not a partner but, perhaps, a parent, sibling, grandparent, close friend or child and you have a trusting, caring relationship with them then this closeness, this intimacy is equally as important with the only difference being you would be clothed laying with the person dying.

For some, this way of interacting intimately comes naturally.

Others may be afraid of touching or unsure of how to touch their loved one at the end of life. Perhaps worried about causing pain or discomfort. Perhaps worried of what others may think.

With reassurance and gentle compassion loving, intimacy at the end of life can bring such huge comfort both to the person dying and their loved one and create beautiful memories.

I hope this thought provoking piece provides you with a starting place for discussion about intimacy at the end of life.