Inside the life of a death walker - with Zenith Virago

Foreign.

I do for many years, probably 15 years, I was working with people who were dying or were bereaved or with the bodies of the dead. And I didn't have a name for what I did. And then after about 15 years I thought, what am I doing? What am I actually doing? And I just thought I am walking with those people, I am accompanying them in their journey, but I'm not actually doing anything for them. I'm encouraging them, inviting them to do what they need to do as the dying person or as family and friends.

It's a non medical role. So I don't often I don't even ask people what they're dying from when I go to meet them because I sort of have nothing to contribute to that side of their situation. And that's for the medical people or other health professionals. And the funeral director is generally only dealing with the collection and conveyance and processing of the person once they've died, towards the burial or cremation. So that after death care. Whereas people like me are working with people when they're. Well, when they're dying, when they have died. And we might be working with the family and not the dying person because they don't want to talk to anybody. So it's a very across the board. You're responding to whatever is in front of you, whatever the request for assistance or help is. So normally I just say to people, what do you want from me? Because I have an incredible wealth of experience now. I have a big toolkit and I have a lot of resources. And so I need them to work sort of begin that conversation themselves. So they have to work out what it is they need so that I can assist them with that generally or refer them on.

Well, I think actually you need to rethink that because really tell me more because originally, before religion, before the medical system, before Health practitioners, family and people died. People just died. But those people were generally looked after at home because there was nowhere else to be. And usually by their family or by their village or by their community. And then when hospitals came into being, I mean, you're not old enough, but people who are my age, in their 60s or older, will remember that when we were children, old people said, oh, I'm not going to hospital. That's the place you go to die. Whereas we have a concept that you go to hospital to heal or to cure whatever's wrong. But in the past, that was there because generally they would die at home. And religion, you know, people, every religion, every philosophy, every sort of spirituality generally has a concept or a dictate about death. But before they came into being or before anybody signed up to that religion or was born into it, there was just life and death. And so in a way, it was much more simple. And what has happened is that hospitals and health practitioners taken over the medical physical care and religions have taken over the sort of spiritual care because people want to believe something leaves the body, that something lives on, and they want to believe that they're going to somewhere. They're going to somewhere. A lot of people are not good in the not knowing and they're not good in the mystery. So those institutions are very supportive of for people to live in a way knowing they're going to die. And it's sort of an investment in their afterlife. But no one actually knows what happens after we die. We know that the body dies, but we don't know if we have a spirit, if we have a soul, consciousness, being, whatever, where that goes and what happens. And that's sort of exciting. I find, having been with many people in those situations. And there's something about the mystery that we don't know what it is, that when we're trying to find the answers to everything, to just be with what is. And so, you know, religion and medicine are relatively recent. It is the traditional way. It's not an alternative.

No. And. And young people die, middle aged people die. It's not a guarantee that we're all Going to live a long life. But generally, if we have lived a long life at some stage without medical intervention, we may have died. And so it's a. You know, it's a great thing. But really dying is an inside job. Aging is an inside job. It's about how you feel on the inside, how you accept or deny that process.

Yeah, I had nothing to do with death at all until my friend Sylvia died. And she died suddenly in the garden in Clunes. And her body was taken away by the ambulance. And later that day I went with her husband. He had to go to identify her body. And I'd never seen a dead body before. I saw her in the hospital. And with that I was fortunate to have an experience with her body where I thought felt her physical energy leave her body. And what I know about my life is that I learned something once. So I've become very present because I'm often only going to have that experience once. And I don't want to miss that. And that's how I'm going to be with death. I'm going to be very present to that moment. So I don't miss that moment of what happens. Because I haven't spent 30 years on that coal face to miss that moment. And if there's nothing fine, but if there is something fine, it will all become clear in the moment. But what that did for me was we then took care of her body, we did the paperwork. We didn't use a funeral director to do the work. He just accompanied us and supported us to do it ourselves. And then we had a ceremony for her which was very simple but very real. And probably in that moment I realized that it's what the people do that makes the difference in how they live on. So if you feel that you've honored that person fully, but it's really about participating, it's about having hands on with the body of the person that you love, for your brain, for your nervous system, for your heart to accept that that person is dead and what that actually means. But most people who are involved with the care of the body realize quite quickly that the body is empty. That the part of the person that we know and love that isn't the body is the energy, the life force, whatever, is gone. And children realize that really quickly. They'll come and look at a dead body and they'll say, well, that's not Nana, she's not there. And they, they get it really quickly because it's so obvious to them. And so we as adults have got much more attachment to some, to the physical form of someone because we've embraced it often, we've made love to it, it's birthed us, it's fathered us, whatever. So we have a deeper connection to that. Whereas children have a very simple day to day connection. And so for them it's very easy.

Yeah, and I'm really understanding a deeper level of living, a deeper level of our emotions about what death teaches us. And we all know about post traumatic stress or disorder, but there's also post traumatic growth. And so some people will grow exponentially from something that is traumatic, which in the moment may seem catastrophic or terrible, but it sometimes grows us in a way we can't imagine. And it can be anything, doesn't necessarily need to be a death. It can be our own experience of a health crisis or falling in love and falling out of love, whatever. Having children, I mean, you know, it's a very pain, it can be a very painful experience to have a child, but it's exponential growth to become a parent. And so life is all about richness and depth. And the funeral ceremony is a lot about life and about living on from that moment and taking the gift or the lessons from that death on into our lives. A bit like when kids have a pet that dies. So some parents will say, oh, the dog ran away. But they're really sad because they know the dog died. And that's a very mixed message for a kid because they can see that something is not quite right in that picture. Whereas parents who allow the children to feel the depth of their emotions and bury the dog in the garden. You know, those kids are growing a capacity for loss. They're growing a capacity to feel deeper, richer emotions which are love and they're okay at the end of that and they will go and sit in the garden at that dog's grave for a while and then they'll get a new dog or they'll get new activities in their life and that pain will lessen.

Sure. Well, every death is its own entity, full stop. But our response to that death is different every time because it depends on who the person is, how they have lived and the circumstances of their death. That's sort of about the person. Then it's about us, who we are, our experience of life and death so far. But our relationship to that person will give us a different response every time. So for example, if it's just the neighbour and their elderly, we'll just say, oh, I'm sorry to hear that, I'm going to miss them walking up and down the street and saying hello. But if it's a family member, if it's a very close friend, if it's a partner, if it's a child, then that relationship is different. And the subplot to that relationship is our love feelings for that person. Because sometimes people are also glad when someone dies, even if that's someone close to them, because if that person has been abusive or cruel, then they're glad that that person's dead. And also now, like what you mentioned before we began, which is about that sandwich generation where people are caring for their children or their grandchildren and, and they're having to care for elderly parents who have lived a long time. Then you know, when those parents die, they might be, they're full of lots of different emotions. Some of them are relief that they don't have to spread their time anymore or it's not going to take up all of that energy. And so you have to be able to break it down into sections where you can say, well, I'm glad they're dead, but because my life becomes my own, but I love them and I'm going to miss them as my parent or as my friend, whatever. So it's really good to just break it down into sections where you can have a different response or a different emotional response to each part of that loss so you don't have to feel bad that you feel good and we.

All.

But it's also our attitude that quantity is better than quality. So for me, as a marriage celebrant for 30 years, I don't think the measure of a relationship or a marriage is longevity. It's about quality. Because a lot of people stay together because they're terrified of being alone or they're insecure. And so some people have a great relationship. As a long term relationship, great. If that's you, well done. But the measure of a life is not the longevity of it, it's the quality of it. And so we need to see, because you've got people who are living with dementia and Alzheimer's for 20 years where that is very challenging for them because they're gone, but also their family and friends where they're relating to the body of someone but not to the mind of someone or the personality of someone. So there are lots and lots of challenges now that are extenuating because of medication.

I think some of them are the conversations at the kitchen table and the bedside, and then some of them are watching the family take care of the body, especially in sudden death. So if you've got an expected death, where someone is dying from a disease, weeks, months, years, then people have time to adjust. That's its own particular journey. But often when someone dies suddenly. And so one of those that I'm thinking about right now is when a young woman I know died from an ectopic pregnancy where she had. She was at home, she knew she was pregnant, they'd announced it to close family, and then she started to feel unwell and she googled the symptoms that she had, and she was a reasonably intelligent person, and she thought it was an ectopic pregnancy, which is where the fetus starts to develop in the fallopian tube, which of course is a deadly condition. And so she went to the hospital, they misdiagnosed it here, Mullumbimbi, and sent her home. And there were a couple of other steps, but basically she died overnight on the kitchen floor in pain. A helicopter took her to Lismore. Her parent, her mother, was informed in Germany that she was on life support. And so one of the things that people don't understand is that sometimes life support is actually death support. The person is dead, but they are just oxygenating the body. But in some circumstances it is life support and people will return. But sometimes, and that's very confusing for people, unless you've had that experience. So it would have been so much better if someone had told that woman when she got on the plane that her daughter had died. So she could have used the journey to come to terms and process that for 24 hours on the flight, but instead she spent that 24 hours in hope that when she got there, her daughter would be alive and a miracle might happen or whatever. And so when she got there, they told her that they'd switched the life support off, but she'd actually died on the kitchen floor at home. The mother was able to participate in that fully. And I watched her in that experience. And I just thought, what do other parents do when their child dies? How can they process that loss without a physical connection to that body and being Able to do whatever they need to do. And what I see. And she put her head into her daughter's tummy, she held her feet, she washed her body along with some friends. But such a lot of processing of emotional adaption to that situation and to releasing shock can happen when you are doing something. And so taking care of the body of someone you love is a great way to move some of that, especially when it's shock because someone's died suddenly. And so some people are afraid because it's a new experience. And so if you've got someone like me or a nurse in your family, family who is familiar with that and can guide and assist you to do that, the outcome is always better. And I see one of my biggest learnings from 30 years of working with people is that most people are incredibly capable. They are incredibly courageous if they are accompanied and assisted and rather than closed down or will take care of that. But if they're encouraged and supported and invited in and that is incremental, it's gentle and it's explained, then people really go beyond. And without fail, they will say, thank you for helping me to get to that moment. Thank you for explaining that. Thank you for allowing me to do what I needed to do with my person.

Well, it's always been possible, but then it starts to depend generally on the amount of people you have as a team, but also on the medical condition of that person. So no one should be dying in pain. So palliative care, you know, they are great pain managers as well as wonderful people. And that whole palliative care model is a real. If I was dying, I'd be going to palliative care. I would not be looking to oncology or anything. Because palliative care don't see death as a failure. What they do is make that end of life the very best it can be. They're not prolonging life at any cost. And so people. From the very beginning, I've worked with people who are dying at home, and I'm sure people have always done that. And that's great for lots of reasons. But the downside of that is that family members. And when I say family, of course I mean anybody not family, family by blood, but family by choice. Family of choice. Yeah, yeah. Anybody who considers themselves family, they have to be the family person and the carer. And sometimes when the physical demands of that person become so great, sometimes that can be a stretch for the people. And so sometimes people will go into palliative care, hospice care, hospital care, and so that the family people can come back to being the son, the daughter, the husband, the wife, and then just have that last dying period without having to attend and being worried about the pain and the medical treatment. So it's a very much an individual decision for. For the dying person in consideration with the people they're expecting to care for them and their decisions about what's the best for that situation. Because dying at home is great, there's no doubt about that. But sometimes it's very hard for people to watch that person suffer in that way and feel they should have done more.

Yeah, I think people just need to feel that they were well informed, they knew what their options were, they considered them, and they were able to make the right decisions or the best decision decisions for them. And so, as I said, dying is an inside job. So it doesn't really matter in a way where you are, because it's what's happening on the inside that is important, as well as the pain relief if you have a disease that is painful. But generally people will say, we cared for our person and we're really Glad we did that. But sometimes, oh, God, we cared for our person. It just took forever. And the end was difficult or challenging, but we wouldn't change it. So it's very much an individual thing. So my work is really about offering people their options, explaining them so that they can make a decision and consider it, so that that is the right thing for them. And the byline to that is so that they don't have regrets and they are able to move forward.

Well, I'm not sure if I have words of wisdom for that particular situation, but what I would say, and I think that it's a valid statement from that coal face, is that the dying person only has one job to really do, which is to die. And they are moving towards that goal, towards that outcome, either willingly or reluctantly or somewhere in between or the very best they can. But the carers have lots of other demands on their time. They often have children, or they want to be with their grandchildren, or they are in a partnership. They may have a job that they're managing a business. There's so many other demands from life. And I think the thing that I would say is to be as kind to yourself as you are to others and to put the oxygen on yourself before you take care of others. So we all know that expression when we're on the plane. You know, it's put the oxygen mask on yourself before you look after the children. And in a way, if you don't sustain yourself and. And you might have to have a family meeting, you might have to do things that you don't want to do. The person might not want to go into care, but that may be the only option when you look at all the practicality of it. So I think whatever decision you make, be that to care for someone or to make other arrangements for them is to have considered that fully, but taking your own needs into consideration, because you have to live on. And sometimes that is a much longer period of time than people are expecting, because often when people get good care and they are loved, they live longer. And so, you know, that's a pretty tricky situation for people who are expecting something to wrap itself in a reasonable amount of time, but the more care and attention because some people are lonely, some people are desperate for loving and there's so many scenarios in that situation. But absolutely look after yourself, value yourself in that equation, not just the person who is is demanding that time. And, and don't feel bad if it doesn't look like the storybook outcome, you know, because sometimes life isn't a storybook. You know, we, it's full of different than not.