Author: This moment Matters

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

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.

Here is the date for our next conversation in dying, death and grief – Thursday 28th January 2021 at 7.30pm on zoom. You don’t need to have the zoom app to attend.

It’s an opportunity to explore and find a way to befriend death.

Getting comfortable with the uncomfortable.

I used to feel that the subject of death was taboo. Now I feel it’s simply not talked about because people are always waiting for the right moment…. but when is the right moment?

It seems people are seeking permission to start having these conversations.

The elephant in the room – yup, it can be and, I know for some people, those closest to them just aren’t ready to talk about it and that’s ok.

Accepting death, preparing for it and having open and honest conversations about it can lead to a more fulfilling life, a deepening knowledge of our self and, quite honestly, depending on what is discussed, a little excitement or intrigue about the event itself!

So, bring a brew and let’s chat.

There will be a maximum of 8 in this conversation to enable everyone to share and be heard and for it to flow.

Don’t expect it to be serious and all doom and gloom. There will likely be many inspiring words, laughter and hopefully you’ll leave with full hearts.

To book a space send me a message.

PS Remember this is not about me giving a talk. I will happily get the conversation started and keep it flowing but this isn’t about me – this is an interactive conversation with all those that attend.

I’m here to reassure you that nothing changes here for me as your end of life doula during increased lockdown restrictions.

If you need me I’ll be there.

I can also support you via video chat, phone and email too wherever you are in the UK or world for that matter.

Times are tough and you might find it all a little scary whilst you’re at your most vulnerable. Please reach out – you don’t need to face this alone.

Nancy x

I know from my previous experiences all those years ago of working in children’s hospices that, when people asked what I did as a job, the discomfort on their faces and the ensuing silence said it all. People didn’t know how to follow that up.

And that was totally understandable.

Now I have circled back round to end of life care as a doula and in a children’s hospice (whilst continuing my laughter, meditation and cuddle therapy work) I find that little has changed. It’s a real conversation killer but it doesn’t have to be that way.

If I tell people I work with laughter, meditation and cuddle therapy it brings curiosity, smiles, engagement and nods.

If I tell people I work in end of life care the conversation falters.

If I tell people I work part time in a children’s hospice the conversation pretty much crashes.

If I tell people I’m an End of Life Doula there is more curiosity. Perhaps it’s the word “doula” that softens it or invites more conversation?

I completely get it – it’s not an easy subject.

Part of my work as a doula is starting these conversations or supporting others in starting these conversations. The more comfortable we get with talking about it ourselves the easier it get’s with listening to others talking about it. It’s a symbiotic relationship with the talking and listening and how our brains and hearts engage in both activities around such an emotive topic. Talking about it doesn’t mean you’ll die sooner but it may mean you will be more empowered when the time does come.

Talking about end of life, death and dying can be pretty life affirming and not the morbid conversation that you envisage. What better way to understand the preciousness of the time we have – right up until death. It’s about finding joy, peace, resolution, love and friendship. Remember – dying isn’t separate from living – it is part of living. And, if someone tells you they work in the field of end of life care or the death profession I invite you to take a pause and a breath and ask them about it. Believe me when I tell you that they are likely to feel joy at being asked and you may have your mind and heart pleasantly opened.

Let’s talk about Advance Decisions.

Advance Decisions are sometimes known as an Advance Decision to Refuse Treatment (ADRT) or often known as a Living Will.

Most of us understand the importance of writing a Will in which we record what happens to our money, possessions and property in the event of our death but many don’t consider an Advance Decision.

An Advance Decision is a document which details what medical care you would like to receive in certain medical crisis or events should you not have the capacity or ability to communicate them for yourself. An example of the questions asked in an Advance Decision include whether you would want to receive life-sustaining treatment such as CPR, artificial ventilation and/or assisted nutrition or hydration in the event of a serious brain injury, dementia, diseases of the central nervous system and terminal illness.

When you complete and sign your Advance Decision and have it signed by a witness it provides a legally binding document.Importantly it clearly communicates your wishes to loved ones (and medical staff) in a time of crisis when people may be experiencing overwhelm and in a highly emotional state.

It can be a real gift to your loved ones when your wishes are clearly communicated and can help avoid any conflict or confusion over how to proceed with your medical care.

Though some of us may discuss what decisions we would like made for us at the end of life with our loved ones other family members or close relatives who haven’t heard this discussion may have different views. And some families never talk about this subject at all which may leave loved ones second guessing what your wishes may have been.

The best time to complete an Advance Decision is now – we never know what lies in store for us today, tomorrow, next week or next year.

Compassion In Dying provide an online service should you wish to complete one (www.compassionindying.org.uk) or, if you would prefer to have a conversation about the questions involved then I can support you with that.

Don’t hesitate to get in touch should you wish to discuss this further.

Next, I will talk about the importance of writing an Advance Care Plan.

If you are receiving end of life care and shielding there are still ways I can support you.
My job as an end of life doula is not to swoop into your life and manage all aspects of your end of life care (unless that is what you specifically request) but to walk along this road with you, to advocate for you, to liaise, to serve and empower you and to be that support and guide for your loved ones who are by your side.
I am not here to fix or heal and I don’t have all the answers.
And if I’m unable to accompany you in-person it doesn’t mean I can’t accompany you.

But I want to reassure any of you that might need my support for end of life care that I am still here to support you despite local lockdown measures.
If you need me I will be there for you.
If I’m required in-person I will take all necessary PPE precautions to make this possible.
I can also offer remote support if that best suits you.
You don’t have to do this alone 
I am still here to help pre-plan, to listen, to hold space.
Via video chat we can discuss and write an Advanced Decision Plan (living Will).
We can discuss and make a record of an Advanced Care Plan where you have the opportunity to decide what dying well might look like for you such as where you would like to die, who would you like to be there, would you like music, singing, chants or poems, would you like any religious ceremonies or rituals. How would you like the room or space to be?
What would bring you comfort, peace and resolution?
What would you like your after death care to look like?
We can explore and put together a legacy project where you put something together that is meaningful to you to honour your life and that your loved ones can interact with and gain some comfort from. It could come in the form of a memory box, a recipe book, poems or art work, an audio cd or video, a photograph album.
My first question to you is “How can I help?”
There is no need for you to feel alone in this.
We’ll figure it out together.

I’ve had an afternoon out!
Ok, so it’s not everyone’s idea of an afternoon out.
Sitting in a sunny lounge with large windows, drinking iced tea, chatting and smiling with another human not a member of my family (physically distanced of course).
A personal tour of all facilities…….
Talking interesting topics that many avoid…….
Yup, I’ve been to visit a funeral provider.
These folks are progressive and trailblazing in their approach.
I’m hoping you won’t need their service any time soon. I visited their new service in Halifax.

Hmm, I think a live questions and answers video with these folks would be wonderful.

Watch this space…….

http://fullcirclefunerals.co.uk/

My journey into palliative care began in 1992 when I joined the care team at Monastery House (now part of East Anglian Children’s Hospices and relocated to The Nook in Framingham Earl) – a Children’s Hospice tucked away in the beautiful village of Quidenham in Norfolk supporting children with life limiting illnesses and their families.

A move to Scotland then took me to join the care team at Rachel House – Scotland’s first Children’s Hospice as it opened it’s doors to families for the first time and where I stayed (not literally of course. I did have a home to go to haha) until I gave birth to my first child.

Life then took me to Oxfordshire, briefly back to Norfolk, back up to Scotland then to Oakworth near Keighley in West Yorkshire before arrival here in Marsden near Huddersfield where I have lived since 2009.

My life between leaving Rachel House and moving to Marsden saw me drift away from palliative care as my focus turned to raising my daughters but it was never far from my mind.

In 2014, after some very challenging years, I trained in Laughter Yoga using it as a tool for my own well-being as well as delivering workshops to support others on their own path of wellness. It wasn’t long before I found myself regularly sharing laughter at my local adult hospice in Huddersfield. Exploring and learning about the gifts that laughter brings to those experiencing end of life care. This was the moment I found myself circling back into the warm embrace of palliative care.

I have since shared laughter at 4 hospices in West Yorkshire and today, I will be back supporting Rachel House and CHAS (Children’s Hospices Across Scotland) sharing laughter online with families currently shielding from covid-19.

Training as a Meditation Teacher and as a Compassionate Touch and Cuddle Therapist has all been part of a subconscious journey as I come almost full circle completing my training as an End of Life Doula to companion others through their end of life experience.

My continuing work as a Laughter Yoga Teacher, Meditation Teacher and Cuddle Therapist integrate beautifully with end of life care and bring a wonderful balance to my life.