Author: This moment Matters

Dying Matters Awareness Week

by This moment Matters, posted in Uncategorized

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?

Nancy

#dyingmattersawarenessweek #dyingmatters #endoflifedoula

National Death Doula Day

by This moment Matters, posted in Uncategorized

20th April is National Death Doula Day!

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.

Not always in their words but in their presence.

Is this your calling?

With love

Nancy xx

The Signs of Active Dying

by This moment Matters, posted in Uncategorized

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.

Photo by Damien Wright on Pexels.com

With much love

Nancy xx

Eating and Drinking at End of Life

by This moment Matters, posted in Uncategorized

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.

After all, it won’t be for much longer.

Nancy xx

End of Life Depression

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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

Do Not Resuscitate

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Do Not Resuscitate.

Let’s get talking about DNR’s. It’s an important document that you may have many questions on.

DNR or DNACPR: Which means Do not attempt cardiopulmonary resuscitation (DNACPR).

I’ll use the term DNR in this post because that’s what most people are familiar with.

Breaking that down further it means that if your heart or breathing stops your healthcare team (including paramedics) will not try to restart it.

A DNR decision is made by you and/or your doctor or healthcare team and is used to protect people from being given inappropriate CPR and to respect their wishes.

So, who is a DNR for?

There are many reasons why a person might have a recorded DNR decision.

This from Resus,org –

“Some people choose to have one simply because they do not want to be resuscitated in an emergency. They might have a personal reason to make this decision, but this varies depending on the individual.

Others make the decision along with their health care provider, after experiencing health issues that might inform their decision.

There are also occasions when healthcare teams may have to make decisions on behalf of patients. In this case, they would try to involve patients or their loved ones wherever possible. This might happen because a patient is so unwell from an underlying illness, that CPR will not prevent their death. By making the decision on behalf of the patient, there is an opportunity for the patient to have a peaceful, dignified death.

A DNR only specifies whether a person will receive CPR or not. Patients will still receive appropriate treatment for their health issues and all personal care needs will be attended to.”

A DNR is usually recorded on a special form. It is kept on your medical file and you will usually have the original copy with you at home, in your care home or hospice. Different doctors and hospitals may use different forms to record your DNR wishes so it’s important that a copy of yours is on your medical records and that you take it with you when admitted to hospital and keep it in an accessible place, where someone other than you knows where it is when at home.

So, who complete and put in place a DNR?

Anyone.

Despite popular myth that only those with serious or life limiting illness being allowed to put a DNR in place EVERYONE who has capacity can do so. I have known some GP’s to refuse to put them in place for healthy adults but you have every right to do so should you wish either ask again stating the facts or opt to see another GP.

You can change your mind about your DNR at any time but you must inform your healthcare providers. What may have felt right for you one day might not feel right for you another.

Three very important points here –

1. If you want to make your DNR wishes legally binding then put in place your Advance Decision (ADRT which I’ll talk about soon)

2. Tell your people that you have put a DNR in place. If you don’t tell them how can they possibly advocate for you!

3. I cannot emphasise this one enough – Let your next of kin, your people, your carers know EXACTLY where to find your DNR. Without it physically present your wish for refusal of CPR will be ignored or dismissed. Let’s say you collapse and an ambulance is called, without seeing that DNR, the paramedics are obliged to perform CPR. They will not have access to your medical records. And yes, you even need to take it to the hospital with you so they have a copy of it too. I advise people with a DNR to keep it in an “In Case of Emergency” (ICE) folder, somewhere easily accessible and let your people know exactly where it is. A specified letter rack or something similar by their front door (on the inside , of course) can be helpful. It is absolutely devastating for people caring for you and not able to produce your DNR on request and watch helplessly as CPR is performed. And that absolutely does happen. So, put it somewhere easily accessible and tell your people where to find it.

As a doula it is not part of my role to help you complete a DNR registration – that is between you and your GP, hospital consultant or hospice team but I can accompany you during the process.

There, I think that’s covered the most important aspects of a DNR but let me know if you have any more questions or if I’ve missed anything.

With love

Nancy xx

When Mothers Aren’t Present

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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

Let It Be Light

by This moment Matters, posted in Uncategorized

n case you need to read this today…..

Let It Be Light.

She didn’t “let it go” as requested by those close to her, by teachers, by enlightened and other well meaning folk.

Instead she let it be light.

When she realised she could hold it lightly instead of letting it go the grip of what was weighing her down loosened.

And she began to notice the possibility that it might fall away when it was ready.

When the moment was right for her.

Not when the moment was right for others.

When it had been acknowledged and seen, understood and felt.

And as she held it lightly layers of resistance began to shed like skin, peeling away, little by little.

Organically.

As she carried it lightly she still felt the sting of the blisters as the weight of it rubbed her in places she was already raw.

But she learnt to adjust the load.

To listen to what it and she needed.

And she just let it be light.

As she held it lightly it was taken gently on the breeze.

Floating away, often unnoticed.

No forcing.

No trying to fly-tip something that was still attached by threads of herself.

No turning up the volume on her headphones so that it couldn’t be heard.

She did not “let it go”.

She just let it be light.

Words by Nancy Nudds 2022

n case you need to read this today…..

Let It Be Light.

She didn’t “let it go” as requested by those close to her, by teachers, by enlightened and other well meaning folk.

Instead she let it be light.

When she realised she could hold it lightly instead of letting it go the grip of what was weighing her down loosened.

And she began to notice the possibility that it might fall away when it was ready.

When the moment was right for her.

Not when the moment was right for others.

When it had been acknowledged and seen, understood and felt.

And as she held it lightly layers of resistance began to shed like skin, peeling away, little by little.

Organically.

As she carried it lightly she still felt the sting of the blisters as the weight of it rubbed her in places she was already raw.

But she learnt to adjust the load.

To listen to what it and she needed.

And she just let it be light.

As she held it lightly it was taken gently on the breeze.

Floating away, often unnoticed.

No forcing.

No trying to fly-tip something that was still attached by threads of herself.

No turning up the volume on her headphones so that it couldn’t be heard.

She did not “let it go”.

She just let it be light.

Words by Nancy Nudds 2022

Image “Alone” by Nitesh Kharpuriya

Supporting Documents in Life & End of Life

by This moment Matters, posted in Uncategorized

Right – down to the nitty gritty again.

Let’s talk about documents.

Yes, you all know about Wills although many of you may not have written one yet!

But there are other documents that are hugely supportive in life and in death including as we die.

I’ll write them here and go through them more in detail in separate posts.

DNR or DNACPR: Which means Do Not Attempt Cardio-Pulmonary Resuscitation.

ReSPECT – Recommended Summary Plan for Emergency Care and Treatment

ADRT – Advance Decision To Refuse Treatment (sometimes called a Living Will)

ACP – Advance Care Plan

LPA – Lasting Power of Attorney.

There are 2 LPA’s one for financial decisions and a separate one for Health and Welfare Decisions.

Remember, I am going to talk about each of these more thoroughly in separate posts.

Now, this might seem a lot to get in order but step by step it’s easily done.

Most of these should be done now, whilst you are well regardless of your age and current health status. One of the hardest things to do is getting them in place in a time of ill-health or crisis – believe me, I have witnessed the stress and anxiety. Sometimes it’s impossible. Sometimes it’s too late. Besides, in times of overwhelm you will not be thinking clearly and will make decisions based on fear as opposed to a more thorough groundedness, thoughtfulness and sense of safety.

Once you start to create or put in place these documents collate them together in one place such as an “In Case of Emergency” or “Supporting Care” folder, keep them somewhere easily accessible and tell your people exactly where to find it.

As always I’m here to guide you through getting these documents in place.

With love

Nancy xx