Interview With an End of Life Doula, Anna Lyons 1

End of life doula, Anna Lyons

We caught up with Anna Lyons, an end of life doula to hear her perspective on how people think about end of life, contemporary attitudes towards death and what it takes to work with those nearing the end.

If you are approaching the end of your life, you may wish to take out a funeral plan, as this will freeze funeral costs at today’s prices, and reduce the financial burden on your family.

If you are caring for someone who is approaching the end of their life, you can begin arranging the funeral here.

Hi Anna, welcome to the Beyond blog. As a starting point, could you summarise what an end of life doula is?

AL: Hi. I think I can. An end of life doula is somebody that accompanies someone else at end of life. It doesn’t mean they’re necessarily there with them when they die, it’s really just about supporting people. Supporting their family, supporting their friends – whatever is appropriate and whatever they need during an end of life process really.

Bench and autumn leaves

So, to a large extent, the role is about helping people come to terms with their death?

AL: Well, it can be. But I also think that it’s quite dangerous to say that you can do that sort of thing. I guess the thing that we all work towards is helping people find a better understanding of what’s happening. Perhaps some acceptance, but really the main idea is that you are there to support people to live as good a life as they possibly can right up to the very end. So, it’s not that you’re helping them die a good death, it’s that you’re helping them live as good a life as possible.

 

So, it’s almost like making the most of your final moments?

AL: Yes, and if you’re able to acknowledge that life is finite and that you’re coming to an end, I think people may be able to do and see things differently and perhaps be able to say goodbye and make decisions about what they want and what they need. I think when you’re ill, you feel as though all the control is being taken away from you, all the decisions are being taken away from you, and being a doula is very much about empowering people to take back control, so that the individual is making decisions. It’s also about empowering their friends and families to be able to be there for them.

 

I know you said it’s not about helping people come to terms-

AL: Well, in some ways it is. It’s what you want but not necessarily what you can achieve. It’s really important to not tell people we can do these things, because we don’t know if we can. Also, some people might not want to come to terms with it. If you have a 25-year-old who is dying and it’s really not fair, how do you find a way of making that seem okay? Of course, there are people who will embrace it and there are people that will say it’s okay and be very accepting of the situation. But there will be some people that aren’t and that’s fine too. Really, it’s about acknowledging their pain and saying ‘I hear what you’re going through and I understand everything you’re saying.’ But I think walking in and saying ‘I’m going to help you come to terms with this’ is arrogant.

 

I often talk about the individual as the axis around which all the medical and care teams spin and I’m just a part of that, an extra layer, someone that is less emotionally involved, so that if they feel they need to rant and rave and be really honest about things; they can. Likewise, I also often work as an advocate, because when you enter a medical environment you’re quite often being told very difficult things by medical professionals using medical terminology, and you don’t necessarily always ‘hear’ what’s being said or you forget the important questions you wanted to ask. I can take a step back, I’m able to take notes, prompt them to ask the questions or even ask for them, and keep talking to them about those important meetings and conversations afterwards.

End of life doula, Anna Lyons

It seems to me like a fairly new profession.

AL: I guess it is fairly new. Well, though the term end of life doula is new, I think what we do is actually incredibly old. People associate doulas with birth and I often feel that if I introduce myself as an end of life doula, people still don’t really understand what it is or what it means. Very often, someone will introduce me as someone who ‘helps people die’ and people will come to all sorts of misconceptions, like that I take people to Dignitas – which I absolutely don’t! You have to be very, very careful with the way you word things.

 

Death and dying remain quite sensitive topics, I guess. You’re seeing people at their most vulnerable, fragile state…

AL: Absolutely, and their families. People can really act out of character and do or say things that they wouldn’t necessarily do or mean otherwise. You just have to be incredibly careful. You’re with people who are going through things that they’ve probably never ever gone through before and are experiencing emotions that they’ve never felt, so don’t know what to do with them or where to put them.

 

I imagine you see a whole range of emotions as well.

AL: Yes, it’s quite interesting because I tend to work with people quite early on, so we talk about how they think they might feel and very, very often how they think they might feel is a million miles away from how they actually feel when it’s happening.

 

You’ve touched on two qualities that are really important in your line of work. The first is being adaptable…

AL: Absolutely. You have to be entirely person-centred and needs-led and you have to constantly revisit this because, as the illness progresses, their needs will change. As their emotional understanding progresses or regresses you have to constantly revisit those questions. Re-ask: ‘What matters to you?’, ‘What is your understanding of what’s happening?’, ‘What is really important?’ and ‘What do you need?’ and ‘How can I help you best?’ If you wanted to work in a certain way and that was the only way you were prepared to work, you couldn’t possibly do this job.

 

Ultimately, I’m kind of a blank canvas. I don’t come in as someone who is going to ‘do my thing’ at all. You have to be very aware of your own limitations. One of the most important meetings I have with individuals is talking about the things I can’t do for them and that there might be someone that could do the job better. Often, I am not the right person and you have to help them find someone who is the right person. My biggest thing is that everyone deserves to die with deference, everyone deserves to die with as good an end of life as possible, and you just have to put ego aside for that.

 

Absolutely. You also mentioned the importance of being able to detach yourself from what’s going on.

AL: Perhaps detachment is the wrong word. You have to be present but, because you’re not a family member, you have a different relationship. I’ve ‘looked after’ family members and friends and it’s so different. You might imagine that ‘working’ as a doula with a friend would be similar but it’s absolutely not at all. You’re a lot more emotionally invested. You bring a lot of your heart into doula-ing, it’s impossible not to. But you do have boundaries and there are very strict therapeutic boundaries, otherwise you wouldn’t be able to do your job.

 

I can imagine there must be certain cases and certain days where you’re feeling a little rough and it’s hard not to take anything home with you.

AL: Yes. It’s really hard. I’ve worked in palliative care for a long time and I’ve had to take breaks from it. Some things impact you more than others, some people impact you more than others. You can work with people for days and you can work with people for years and over years you build up relationships with people and their family and friends. Every case is different but there are some that really impact you because of the amount of time you worked with them or sometimes because of similarities with your own life. For instance, I worked with a little boy who died at a very similar age to my daughter’s and it was incredibly difficult for me because you’re able to put yourself there and you think that could have been mine…that could have been me.

 

I expect it can make being that ‘blank canvas’ you were talking about even more difficult. So, what led you to become a doula?

AL: My best friend died when I was 17 and I made the decision then that I was going to work with people at end of life. As a result, all of my further education was geared towards that.

 

Are there any formal qualifications required to become a doula?

AL: No. Sadly, not yet. You can do a course but there’s no government regulation or registration. I went to end of life doula school but I certainly wouldn’t have felt capable of working after that course if I hadn’t already clocked almost 20 years working in end of life care.

end of life at a hospital

I guess that’s the kind of experience that will help. It’s not something you can really learn from a textbook.

AL: No, but you do need some kind of basics and, because you’re working with vulnerable people, there needs to be some kind of regulation. But I don’t know where it’s going to come from. I mean, 20 years ago, birth doulas were really frowned upon, the hospitals didn’t want them there at all, but now they’re wholly embraced as an extra layer of support. Hopefully, over time, when there is some form of regulation and we are seen as a legitimate ‘profession’ or essential role within the care team, we’ll start to be a bit more embraced by the medical community. At the moment, I think it is fair that they’re slightly wary because you can just decide you want be a doula and do it, without having had any experience or background.

 

I find it interesting that the profession isn’t regulated at all. It’s almost as if the government consider it on par with something like a hobbyist life-coach…

AL: It has to be regulated. I am constantly at odds with myself about even calling myself a doula. I don’t know if I should. I don’t know if it’s the right term because of the lack of the regulation and because I’m not ‘qualified’. Not that I haven’t done training, but that there’s nothing to actually be qualified in. I very much want to raise awareness for end of life doula-ing because when it’s done properly it’s absolutely incredible and it changes people’s lives. How someone dies and how they lived those last few months has an enormous impact on the grieving process of those left behind. Being able to help facilitate as good a life as possible for that person makes such a difference to the bereaved.

 

Do you see attitudes towards death in society changing? Are you finding people are more willing and more open to talking about mortality and death as something inevitable?

AL: No. No I don’t at all. I think we live in a little bubble. For example, my Twitter feed is full of people that are happy to talk about death, they are people I follow because they talk about death and dying and they embrace the fact that life is finite. So, I sort of kid myself into believing that actually attitudes are changing. I like to use the analogy of a Michael Moore film. The people that go and see a Michael Moore movie are the people that already agree with him. The people that needed to be watching that film won’t ever see it!

 

I think the only way we are going to make headway is if death and dying become part of the National Curriculum and they get taken into primary schools and we normalise talking about it. In my family, like the way little girls plan their perfect wedding, we sit around and talk about what colour we’re going to paint our coffins. We don’t talk about it in a way that requires a big ‘I’m going to sit you down now and tell you that life is finite’ moment, we talk about it like it’s a natural process. We all live, we all die, there’s no more of a big deal to be made of it than that. Now, when people die, we talk about it in whispers, we keep it away from children and we don’t let them go to the funerals. For example, when their goldfish dies, we replace it rather than letting them know their goldfish has died.

 

A lot of kids’ material on death does seem quite clichéd, allegorical and sometimes even disingenuous.

AL: I think we do kids a disservice by hiding the reality of life from them. We just have to acknowledge that we’re not here forever and it doesn’t have to be morbid and maudlin. My kids are not morbid and maudlin, they don’t really feel any which way about it, they just know it’s part of life. They know I sometimes feel sad because someone I work with has died. They acknowledge that they’re not going to live forever and that’s ok.

 

How adults react and how they deal with end of life and death very much informs how their kids do. Part of one of my jobs when I worked in a day centre with life limiting illness was to go into schools and talk to kids. I found, when you talk to them about it, they’re interested, they ask questions, they want to expand their minds and are eager to know. The children that aren’t curious are the ones that have been through bereavement and it has been hidden from them or not been dealt with openly.

 

Death just needs to be seen as normal. All living creatures have a lifecycle and lifespan and us humans are no different. There’s this amazing thing on Instagram called ‘They Didn’t Die,’ where this person has put together all the ways people get around saying someone has died in obituaries. It’s just absolutely brilliant. It’s about using the right words for things. They died. If we don’t use these words, we give them greater power, a huge impact. If you say death or you say dying, people shudder because it’s almost a swear word. We need to reclaim it.

 

As human beings, I guess it’s normal that all we can really understand is waking life and it’s natural to have some hang-ups about death.

AL: We’ve turned it into something else. By refusing to talk about it, we’ve put it on this huge pedestal and we’ve labelled it the most terrifying thing that can happen to anyone ever. When, actually, I’ve worked with a lot of people for whom it isn’t. They’ve lived a good life, they’ve loved and they feel like they’ve had a really beautiful time and they’re ready. When somebody dies in that way, it’s sad that you’re not going to see them anymore but there’s this real feeling that they have lived and that’s the wonderful bit.

 

There’s a grief ‘theory’ called Continuing Bonds that I really like. My grandad died when he was 97 but he taught me how to make these sand castles with stairs that lead up into the top of the castle. I taught my kids how to make them and they know that he was the one who took me to the beach and did it with me. So, when we go to the beach, we talk about him. Peoples’ influence carries on and impacts so much of our future. That’s a big part of it for me. Yes, they’ve died, but the impact they’ve made does continue to matter and often in a very positive way. Continuing the ties we have to the people who have died is normal and healthy. Death does not decrease or deplete our human attachments and acknowledging the lifelong impact someone has had is essential, I think, to finding a way to live with grief.

 

For me, it’s very much about remembering people with a smile on your face. That’s how I like to remember people close to me that have passed. I think that can happen with time for most people. I guess part of your role as a doula is to make that happen quicker…

AL: You can’t make that happen quicker. I don’t think grief gets any smaller, ever. There’s this really lovely theory by Dr. Lois Tonkin that says grief stays the same size. If you make a fist and that’s the size of your grief, for your entire life it will remain like that. What happens is that life grows around it. Life gives you things that help you, that feed you, that fulfil you, that nurture you. It doesn’t reduce the amount of grief for the person that you’ve lost ever, but it helps you get on with the everyday. Some days you can think about the person who has died and feel okay. Other days, your grief will feel as difficult and tragic as the day they died. But you get on creating a life around that grief. Grief is a process – there aren’t any steps or stages and everyone deals and copes with it differently. We should never ever judge people. Who are we to say that’s the wrong way to deal with it?

 

Anna, thank you so much for your time. It’s been incredibly interesting talking with you. Where can people find you?

AL: Thank you. If people are interested, there’s the Life, Death, Whatever website and we’re talking about putting on another festival together soon. I’m on Twitter and Instagram and people can contact me over email as well on [email protected]

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Behind the Scenes at Scattering Ashes 0

The team from Scattering Ashes hold up a mini Viking funeral boat.

With cremations now accounting for an impressive 76% of all funerals in the UK, more and more families are looking for creative – or even spectacular – things to do with their loved one’s ashes.

That’s where Scattering Ashes come in. Founded in 2009 by Richard Martin, this incredibly comprehensive site aims to help its visitors find the perfect way to say goodbye, whether that be a peaceful seaside scattering or going out with a bang in an ambitious firework display.

This month, we caught up with Richard to talk about scattering techniques, Viking funerals – and why you don’t want to leave ashes at Jane Austen’s house.

Hi Richard! Thanks for the interview. How did Scattering Ashes come to be?

Ashes being scattered from a vintage wartime Tiger Moth
Richard and the team can help you scatter ashes from a vintage wartime Tiger Moth plane, among other things.

I worked for the Environment Agency and DEFRA for many years, and it was looking like it might be time to change career. So, I thought, ‘What would I like to do?’

I’d scattered my dad’s ashes years before, and felt that we were left a bit at sea because the funeral directors didn’t have any information. We scattered his ashes at his golf course, and we weren’t made to feel very welcome when we went there –  and we certainly weren’t made to feel welcome when we wanted to go back. It all just felt a bit unsatisfactory.

So, I had the idea that perhaps I could help people by providing information about scattering ashes, because there was nothing out there online. I started blogging and then the business grew from there.

A Viking Longboat urn from Scattering Ashes
The Viking longboat urn from Scattering Ashes actually floats.

What’s your favourite scattering method on the site at the moment?

One thing that seems to have hit a chord with people is the Viking boat.

We do an almost metre-long Viking boat that holds a full set of ashes. You can set it afloat, set it on fire, and it goes up in a blaze of glory. We’ve tested them, and they’re pretty cool, I have to say. When we’ve seen them set sail, they’ve looked amazing! I quite like the fireworks too.



Why do you think people are looking for more exciting things to do with ashes now?

I think society has become more accepting of death. I also think that the old religious practices don’t suit as many people these days – maybe you don’t necessarily want a vicar speaking at your funeral because he never really knew you, and you’re not religious in the first place. And more people are thinking, ‘Well, actually, I don’t want that sort of faux-Victoriana, I want a bit more of a celebratory approach to my life’.

Ashes are scattered directly into someone's face in this scene from The Big Lebowski.
That scene from The Big Lebowski.

You run courses on scattering ashes for funeral directors. Do you have any top tips for a successful scattering?

Mind the wind is my main one.

There’s that scene in The Big Lebowski.

Exactly. Another is to be safe: a chap died last year scattering ashes after he got washed off shore in Cornwall, and the year before that a couple died in Spain doing it, and the year before that a lady fell off a cliff doing it in Ireland. Don’t go to these extreme places, because you’re putting yourself in danger.

A biodegradable water urn shaped like a turtle
This floating turtle urn from Scattering Ashes is completely biodegradable.

The third thing is probably to be aware of the amount of ashes. People tend to think it’s going to be light. In movies, like The Big Lebowski for example, there’s literally a few handfuls. But in reality, there’s something like six pounds of ashes.

So, people often end up scattering for quite a while, then they upend the urn and get this little conical pile of ashes, and it looks odd. Then they realise, ‘Oh god, we’ve got nothing to move it around with,’ and they’re using their feet, and then they go, ‘This is undignified.’

But with a bit of thought, you can make it quite a poignant, memorable ceremony, which is what we try to educate people about.

You keep a (really very comprehensive) record of places that allow scattering – do people often say no?

More and more often, now. When we first started a lot of football clubs were saying yes, and now many say no. Some are trying to cater for it with memorial gardens instead: they realise the demand, but they don’t want it impacting the pitch.

The more people scatter ashes in one place, the more troublesome they find it?

Jane Austen's house in Chawton
Jane Austen’s house in Chawton, where visitors have been asked to stop secretly scattering ashes. Image by Joaotg, courtesy of Wikimedia Commons.

Absolutely. Two particular places come to mind. One is the top of Ben Nevis: a lot of Scots will have their ashes scattered at the top of Ben Nevis. The ecosystem up there is relatively fragile – mosses and lichens. It might look barren, but it’s not.

Ashes are rich in calcium and phosphorus, so when you put a lot of ashes there, you’re changing the ecology of the place. So, the Mountaineering Council of Scotland has asked people to stop scattering at the summit.

They had to put a press release out for Jane Austen’s house because people were sneaking over the wall at night and upending the urns on the weekend. The gardener might come back on Monday morning and find three piles of ashes that had been dumped, and of course, a rose bed can only take so much.

A panoramic view from Ben Nevis, where people are no longer supposed to scatter ashes.
The view from Ben Nevis. Image by Leo Hoogendijk courtesy of Wikimedia Commons

You won Best Bereavement Resource at the Good Funeral Awards in 2015 – what’s your secret?

Honesty, really. I try not to be partisan, and to look at both sides and just use the facts. I don’t have any particular drum to beat about this; I think people should have the right to choose what they do with ashes, as long as it doesn’t impact others. Also, it’s pretty comprehensive: I’ve phoned up and emailed virtually everyone. There must be getting on to 800 posts on there now.

Impressive! And what’s next for Scattering Ashes?

We’re offering training courses for funeral directors and crematoria staff and celebrants, which is new. We’ll also be increasing our trade offer, putting wholesale options on the site. And we now have a sister site here called My Pet’s Ashes, which offers similar services for pet owners, because they’re part of the family too.

If you’d like to find out more about Scattering Ashes, head on over to the site at www.scattering-ashes.co.uk. And if you have your own ash scattering story to tell, we’d love to hear it! Share your thoughts in the comment box below.

Meet the Maker: Cremation Glass Jewellery 0

Glassmaker Kenny Scott of Ash Glass Design.

Pendant with flecks and swirls in the glass made from the ashes of someone who has died

What do you see when you look at this pendant? To the untrained eye, it might look like … a pendant. But to those in the know, it’s something unusual, and completely unique: those flecks and swirls in the glass are made from the ashes of someone who has died.

In fact, the necklace is just one item in a range of mourning jewellery and sculpture created by glassmaker Kenny Scott and his team at Ash Glass Design. Based in the picturesque village of Clovenfords in the Scottish Borders, Kenny and co. craft bespoke cremation glass jewellery for families who want a subtle way to carry their loved one’s ashes with them.

So, how does one become a cremation glassmaker, exactly, and how is cremation glass actually made? To find out more about this relatively new answer to the question of what to do with ashes, we had a chat with Kenny …

 

How did Ash Glass Design get started?

Kenny Scott and his team at Ash Glass DesignKenny began his career at the tender age of 16, leaving school to take on a five-year apprenticeship in making glass from scratch. 20 years later, he was creating glasswork for museums and clients when he received an unusual request:

“One of my friends who’s a funeral director approached me and asked if I would make a memorial pendant for someone using ashes”, Kenny told Beyond. While at first Kenny wasn’t sure (he describes it as “a wee bit of a Marmite moment”) the family was so pleased with the result that he immediately realised that he wanted to do it again.

“After I made the pendant and met the family, it was the best feeling I’ve ever had when making something for someone”, Kenny explained. “They were so happy, and it’s such a precious thing that you’re making for them, that I thought, ‘Oh, I really like doing this.’

“Basically, that was it: I put a wee range together, and from there it’s kind of grown. I love doing it.”

“Nobody would know what it was other than them, and I think that’s the beauty of it.”

Why do people like cremation jewellery?

CreAsh Glass Design's cremation glass mourning ringmation jewellery isn’t for everyone ­– but while some find the concept morbid, others like the idea of keeping a loved one close in a subtle way. “I speak to all the customers, and I think for them the nicest thing is the fact that they can have their loved one with them all the time, and it’s not in your face. It doesn’t have a big sign saying what it is – it’s just a lovely piece of jewellery”, Kenny said.

“Nobody would know what it was other than them, and I think that’s the beauty of it. Everybody says that they get so much comfort out of having it.”

In Ash Glass Design’s range, rings are the most popular option: “Somebody said to me, it’s like they’re still holding my hand.

“We do lots for weddings as well, my goodness. For somebody who has maybe lost a parent, it’s like [their loved one] can be there on their wedding day. It’s a lovely way to have them with you.”

“There’s always something you want to try and create differently and try and adapt.”

How is cremation glass jewellery made?

Making cremation jewelleryThe process of making cremation glass jewellery is long and somewhat delicate, with great care taken to make sure the right ashes (“labelled, bagged, boxed, bagged again”, Kenny reports) are used.

At Ash Glass Design, everything is made in-house. After a discussion with the family about the design, Kenny melts their required colour of glass to make a base. He then carefully adds the ashes before sealing it over with clear glass to make a perfect finished surface.

After some time spent in the kiln – it takes a day and a half to gradually cool the hot glass down – the glass is polished down with diamond tools and set into the gold or silver using a traditional technique. Any ashes left over are returned to the family along with the finished piece.

“You have to know the procedures for cooling glass down, how to heat it up, how compatible it is with other materials, so it’s quite a wee science on its own,” Kenny said, adding that “there’s always something you want to try and create differently and try and adapt. You’re always making new designs as well, to stretch the boundaries a bit.”

“I still get phone calls three or four months down the road from some of my customers saying how happy they are, and what it means to them”

Do you take requests?

Because Ash Glass Design is a small company (Kenny, his wife Emma and “amazing” goldsmith Joanna) the team are able to take requests to make each piece of glass unique: “If somebody wants a bespoke colour in their jewellery, we never charge any extra … We do what we can to help folk get what they want. If [a customer] wants something to be adapted somehow, then we look into it for them”, Kenny explained.

“Sometimes it’s not as feasible as they might think initially, but we can talk them through it, and find the best option for them.”

Customers appreciate this personal service: “I still get phone calls three or four months down the road from some of my customers saying how happy they are, and what it means to them. Even a couple of years down the road, we still get them phoning back, asking how we are. It’s lovely.”


Want to find out more about Ash Glass Design? Check out their website, www.ashglassdesign.co.uk, give the team a ring on 01896 850447, or contact Kenny at [email protected]


About mourning jewellery …

A Victorian mourning ring with hair sealed into the gold.
A Victorian mourning ring with hair sealed into the gold. Image by Charles J Sharp, via Wikimedia Commons.

Mourning jewellery dates back as far as the 1600s, when stern memento mori-themed rings (‘remember that you must die’) were gradually overtaken by more personal tokens of grief. Examples from the British Museum demonstrate how gruff messages like “learn to dye” were replaced by kinder tributes, such as “not lost but gone before” and “not dead but sleepeth”.

At its peak in the Victorian era, mourning jewellery was worn as part of a strict dress code for the bereaved. Mourning rings were joined by broaches and lockets, and were often made with jet (a precious stone that, being black, was thought to be mourning period-appropriate). Many contained a lock of the hair from the person who had died, or a miniature portrait.

Popularity eventually declined as life expectancy increased – by World War One, mourning jewellery was out of vogue. But the desire shared by bereaved families for physical mementos of their loved ones never really went away.

Now, the rise in cremation – 70% of people in the UK choose it over burial – and increasing openness about death are leading to a rise in interest, with companies like Ash Glass Design offering a more contemporary take.