Tag: endoflife

End of Life Depression

by This moment Matters, posted in Uncategorized

Let’s talk about depression at the end of life.

I’m sure you’re aware by now that I don’t sugar-coat the realities of dying and death.

If all I did was share the beautiful, calm and non-problematic dying experiences I wouldn’t be doing justice to all of you who are struggling and you may feel more isolated and worry that you are doing something wrong.

You are not.

Dying can, indeed, be beautiful and life-enriching for some and for others it can seem like a hard slog to the finish line despite the best palliative care.

Depression is a common, although not universal, psychological condition among patients at the end of life and is estimated to affect around 5 -25% of palliative care patients and many experience depressive symptoms even when not given a clinical diagnosis. In fact, those receiving palliative care may face a greater likelihood of developing or worsening a clinical diagnosis of depression due to the awareness of their limited life expectancy. If left unrecognized and untreated this may lead to more severe illness symptoms such as pain, impair their ability to find meaning in life and consequently severely affect their quality of life, the quality of their relationships and bring about a poor prognosis.

The affect on the quality of their relationships can cause great distress to family, friends and care-givers at a time when a family member who is also a care-giver may be experiencing depression themselves form the huge burden of caring and the losses they have experienced and are yet to come.

The family dynamics face a major shift.

If the situation becomes intolerable family relationships can completely break down.

So let’s begin with this – do not confuse depression with grief.

Of course those dying will experience grief at their own demise and their own losses.

Grief and depression do share some distinct qualities and this is where the difficulties can sometimes lie.

Here are some of the symptoms of depression at the end of life:

irritability

insomnia or excessive sleeping

argumentative,

tearful

changes in appetite or an increased craving for food

lack of pleasure

more or less demanding of your time

agitation

sadness or unhappiness,

decreased concentration

forgetfulness or confusion

loss of energy/fatigue

feelings of

hopelessness

helplessness

guilt

resentment

worthlessness

thoughts of death or suicidal ideation.

Depression at the end of life (or at any time of life!) can cause significant suffering.

If in doubt reach out to your care provider – your gp or hospice/palliative care team.

Please don’t ignore it hoping it will go away – it won’t without some form of intervention.

If you recognise your own experience in this, past or present, know that you are loved and that it wasn’t/isn’t your fault.

With deepest care

Nancy x 💚 x

When Mothers Aren’t Present

by This moment Matters, posted in Uncategorized

Ways to celebrate and honour the mum’s who have died, who are seriously ill or who cannot be or are not present for whatever reason and regardless if this is your first Mother’s Day without them or you’ve had many without them physically present.

I’m sharing this ahead of the day to give you time to plan ahead a little.

Incorporate their favourite colour into your outfit.

Buy or plant their favourite flowers.

Listen to their favourite music or sing their favourite song.

Or watch their favourite film or tv show.

Cook their favourite dish or eat a favourite snack or beverage of theirs.

Play the games the loved to play.

If you saved something of theirs get it out, hold it in your hands, get tactile with it – it can help you feel close to them.

Look through old photos and reminisce.

Visit one of their favourite places.

Pray for them.

Raise a glass to them with their favourite tipple.

Wear their favourite perfume.

Light a candle.

Meditate with them in mind.

Re-tell their best and worst jokes.

Read one of their favourite books or magazines.

This is a hard one – go stand in front of a mirror, look at yourself and tell your mum, and in turn yourself, how much you care about them, what you love about them, how they brought you joy or share a special memory of the two of you together. This is so powerful because your mum is still a part of you. Your mum is incorporated into your DNA and into your energetic being – even if the mum you are celebrating is not biological. Even if the mum you are celebrating is the mother of your child/ren, a mother figure or you never met them.

Write them a letter telling them how much they mean to you or about your news. File it with the keepsakes you have kept of theirs, burn in a ceremony allowing the smoke and floating ashes to take your message to them or pop it in a letterbox to heaven if you have one local to you (my nearest is at St Barts in Marsden)

And last but not least – it’s ok to still buy them a card and display it prominently and proudly.

Whatever grief is there let it be present too.

In the next few days I will write about coping with or surviving Mother’s Day if your relationship was toxic, non-existent or if you are currently estranged from each other.

With love

Nancy xx

It’s Not a Competition

by This moment Matters, posted in Uncategorized

“How d’ya think I feel!?” (emphasising the “I”).

I’ve lost count of the times I’ve heard this from either side of the relationship.

And the storm clouds gather.

Facing the end of your life after a terminal diagnosis is not easy.
Most terminal diagnosis or Life-shortening diagnosis are not short-lived illness’s but typically months and sometimes years. And it doesn’t necessarily get any easier over time if it is a long term illness such as MND, COPD, dementia or Parkinson’s.
In fact, living with the slow progression of an illness that erodes physical and mental health, independence and dignity over a period of years can be hugely difficult.
Equally, it can be incredibly difficult for the primary carer, often a partner, sibling, adult child or other family member. It can push a carer to breaking point many times. To support, to witness, to give up the life you knew or hoped for is incredibly difficult.
Even when it is done with the utmost love.
Relationships can get tense.

But here’s the thing – it’s not a competition of who has it worse.
Both are equally challenging, difficult and painful for very different reasons.
You each carry a burden.
The suffering of each of you can feel immense.

It is not easy to navigate this.
I’m not going to dress it up with niceties.
All we can do in these times of suffering is be compassionate to ourselves.
You are still husband, wife, daughter, son and you are you.
Don’t lose sight of yourself beyond the illness or caring role.
Each of you still has wants and needs independent of each other.
When you feel relationships getting fraught or, perhaps, resentment creeping in ask yourself – “what would love do here for me?”
Take a little time to sit and notice your breath – even if the only time you get is when you go to the bathroom or when your care-giver goes to the bathroom.
Remember – it is not a competition as to who is suffering most.
You are enough and you are loved.

Nancy xx

When memory making and the idea and pressure of making memories becomes exhausting

by This moment Matters, posted in Uncategorized

I endeavour to keep things real here for you.

And for me.

It keeps me grounded.

It keeps US grounded.

What a shitty thing for us doulas and death-workers to espouse the idea that deaths should be inspirational, romantic even.

Dying and death can, indeed, be beautiful.

And peaceful.

But sometimes, amongst all that beauty and love, it’s raw, it’s ugly, it rages and it is anything but peaceful.

And I tell you this so that, when the capacity to make memories reaches it’s limit or becomes suffocating, when the overwhelm or suffering becomes all-encompassing and when you encounter the raw, the ugly, the rage, the bitterness of that metaphorical pill, of things left undone and the internal noise of it all that, you don’t think that you are doing it wrong.

You are not.

You are not.

This is dying in all it’s humanness.

And no matter how spiritual, religious, easy-going you are you will very likely be taken by surprise at the strength of it.

The conscious and unconscious, the internal and external pressure to make as many memories as you can in the time you have when time is short, when you or your person are diagnosed with an untreatable, life shortening illness that memory-making ideation can become all-consuming, overwhelming, exhausting and unachievable.

Of course you want to make memories.

For yourself and for your people.

And yet, here is what my doula heart will tell you.

Go gently, my friend.

Make space for it all.

Making memories is not so much in the “doing”, in the photo opportunities, in the forced or choreographed inspirational moments or in the physical legacies but in the “being”.

They are built in who you are.

They are not built in what you do – they are built when you are able to just be.

Being in the quiet moments.

Being in the very ordinariness of togetherness.

Being held in a space of love in tumultuous times.

That’s what makes the most precious of memories.

And sometimes, strangely enough, it’s the times between the deliberate making of memories that become the richest, most exquisite memories of all.

The moments between.

Spend time there too.

This is what will hold those still living in their times of grief.

With deepest love

Nancy xx

Love is….

by This moment Matters, posted in Uncategorized

What love is in your presence at the bedside of the dying.

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 holding back from 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 witnessing the difficult changes but staying there anyway.

It is being eaten up by grief as you watch your loved-one fade away ….. but staying there anyway.

It is getting up every day to care when your whole being is utterly exhausted.

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 witnessing the wringing of hands without turning 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 response.

It’s in your singing.

In your humming.

Love is in the reading aloud 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.

And love is a deep understanding of how colossal these moments in time truly are.

With tenderness

Nancy ❤ xx

Death has a habit of taking us by surprise.

by This moment Matters, posted in Uncategorized

Death has a habit of taking us by surprise.

We always think we have more time with those we care about than we really do.

Even when death is expected.

Even as our person has begun actively dying.

And the death of our loved-one almost always comes as a shock. It feels so sudden.

Again, even when it’s expected.

It’s a really strange scenario.

You know it’s coming.

You prepare yourself for it.

And yet, you are not ready for it when it does happen.

Sometimes, you sit by your person’s bedside for hours, you get up to go for a pee……..and death happens when you are out of the room.

No matter how much we prepare ourselves psychologically and emotionally nothing can fully prepare us for the finality of it.

Perhaps this is due to the fact that we are so far removed from death. Where once we were cared for at home within a community of support and helpers at the end of life whereas now we are carted off to be cared for by others. Hidden from sight of the community and those around us. As a result few get to befriend the intimacy of death.

Perhaps the shock is because this death is a stark reminder of our own mortality.

Or perhaps we are just not ready to release the spiritual and energetic ties that bind us. Similar to having the umbilical cord between mother and baby cut at birth, this invisible, yet tangible cord that connects us, sends a shockwave through all our systems when it is cut at the moment of death. Where, although this person is ever present in their love, our lives are forced to continue separate or independent of them.

Perhaps it’s a mixture of all the above?

This really, is a reminder, a call to action, to say the things you need to say whilst you can.

Go and visit and hold your person’s hand even if words fail you.

Because, quite often, that touch, that shared moment, says more than words can ever say.

Speak to them, through these words or touch, as if it’s the last time you will see them, because one day, it will be.

This moment really does matter.

With the tenderest of love and affection

Nancy 💚 xx

Twas THE Night

by This moment Matters, posted in Uncategorized

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

The Long Goodbye

by This moment Matters, posted in Uncategorized

The spouse of someone I’m supporting has been busy these past few months knitting this intricate mourning scarf and she has given me permission to share it here.

It’s been slow progress as she picks it up and puts it down intermittently.

She tells me that last year she began knitting a baby blanket for her sister. This baby hadn’t yet been conceived but just as she finished the blanket her sister announced the pregnancy!

Almost as if she manifested it.

And now…..

She is taking her time with the mourning scarf – a little apprehensive that it’s completion will summon the death of her husband.

She wants to be prepared and doesn’t want the suffering to continue and yet doesn’t want to rush these moments or hasten the need for it’s wear.

It’s such a beautiful yet brutal reality.

Don’t you think?

And rather an apt description of life and death.

With love

Nancy xx

Tending To The Soul

by This moment Matters, posted in Uncategorized

When I think about how to describe my service as an end of life doula in as few words as possible these four words come as close as I can get – tending to the soul.

How that looked this week was listening to someone I’m walking alongside in their last few months who talked about their fears and regrets.

We began to unravel the fears of what dying might feel for him and discuss what might bring him comfort at that time. We discussed his end of life meds and symptom control.

And I gave him space and time to process and attend to those regrets with love without trying to reframe them, deny them or put a positive spin on them.

Sometimes, when tending to people, I notice so much the family member or friend (and sometimes even medical staff) “brushing off” when the one dying shares these innermost fears, concerns, regrets. As if they don’t matter. Or they say something to placate and the dying person feels unheard, goes quiet, shuts down.

This is the time that not only the body begins to unravel and start the process of transition but so too does the heart and mind.

Just as the body knows how to die so too the heart and soul knows what it needs to find peace at the end.

If only there are people there to tend to that part of us with attentiveness, gentleness and care.

I have witnessed the most steadfast and unmoveable characters reduced to tears because no-one has been heartfully there to bear witness to this process.

It takes skill.

And a ready heart.

To tend to the soul this way.

The term soul does not belong to the realms of religion but to many spiritual , philosophical, and mythological traditions.

Perhaps, consider that soul is simply love.

This is how the ancient texts from Bhagavad Gita describes the soul.

“The soul wears the body like a coat and discards it at the time of death.”

The religious texts of Bhagavad Gita, although based on Hinduism, are approachable and relatable to all of humanity regardless of whether one follows a religious ideology or not and is considered, by some, the epitome of all spiritual teachings.

Whether you believe in the soul or not, have a different name for it, believe it is part of who you are or only reflect on it when your life is coming to an end what I attend to most as a doula is your inner comfort.

Your innermost self.

The stuff that brings peace and comfort to your heart and mind.

Again, I invite you to consider that the soul is simply love.

And I attend to that love.

In many ways.

In many forms.

How would you want your love, your soul attended to as the end draws near?

With love as always

Nancy 💚 xx