In this episode of Covid Matters we speak to the founders of Life.Death.Whatever. - an initiative that encourages open dialogue about dying and death. Louise Winter is a funeral director and Anna Lyons is an end-of-life doula (someone who offers support during a person’s last stages in life).
Both Anna and Louise have seen first-hand the challenges faced in relation to death and grief experienced during the Covid-19 pandemic. Particularly in the first wave with limited contact between families and relatives at the end of their lives and the suddenness at which deaths from this unknown virus occurred with no time to prepare. Louise says, “We were used to listening to people and helping them have the funeral that they wanted to say goodbye. Instead, we found ourselves having to say no, because we were faced with so many restrictions to keep people safe.” These challenges had a massive impact not only on the people who lost their loved ones but on those working in the industry too.
Anna and Louise believe that we can learn a lot about how to deal with dying and grief from our experiences of it in the age of Covid-19. Their book, We All Know How This Ends, – which was re-drafted throughout the pandemic as restrictions on funerals and hospital visits were constantly changing – offers “a handbook of everything you might go through” during the pandemic and beyond. We spoke to them to find out their tips on how to cope with dying, death and grief.
Dying and Death
There is no easy way to approach the topic of dying and death. As Anna says, “It doesn't matter how you look at it: the death of somebody – the end of somebody's life – means that they're not physically present with us anymore. And that is always a difficult thing.”
However through their work with Life.Death.Whatever, Anna and Louise have come to understand certain ways which can help to improve the experiences of people at the end of their lives and their families in this difficult period. They believe that speaking openly about death and dying is vital to achieve this. Louise says, “It's about making [dying] part of life so that we can have those conversations [and] so that when we're faced with something happening to us later on (or someone we love or care about) it doesn't have to be quite so alienating and frightening.”
The key learnings they found in having conversations on this subject include:
The Importance of Physical Presence
Anna’s work before Covid involved visiting people’s houses or going into hospitals. The Covid-19 outbreak made this difficult as her visits turned into online Zoom calls which created limitations for the end-of-life care she could provide. “A lot of my job is about reading between the lines and finding nuances. When you're looking at somebody over Zoom, it's difficult to see how they are in the same way as it is to be physically present with them.” She explains the need for in-person meetings or improved communication via technology to facilitate end-of-life care in the age of Covid and beyond.
This point also resonates with family members and their dying relatives who deeply value the time they spend together in the last moments of that person’s life. Covid restrictions prevented many people in the UK from being able to meet with their loved ones at this crucial time which added to the trauma of the loss for all involved. It’s essential to find a way for families to be together to support one another in upsetting times like these.
The Ability to Say Goodbye
Similarly important is the ability for family members and their dying relatives to say goodbye. Anna says, “What I’ve noticed in doing a lot of grief work with people whose family members have died from Covid is how shocking it was for them to experience not being able to say goodbye.” The deaths were sudden and unexpected as a result of the new virus which left no time for families to share their last words.
One thing that offered some consolation for those who were unable to say goodbye, were the small-scale funerals enforced by law. Anna explains there was “something about having those smaller, more intimate funerals that some people really embraced. They didn't feel like they had to put on such a performance for the funeral; they could do something which was really intimate, and which helped them say goodbye in their own way.”
The Power of Storytelling
Anna talks about the shared experiences from others written in their book, We All Know How This Ends, and why they are so important for grieving people to read: “Death and dying can be incredibly isolating and grief can be incredibly lonely. Because there's been this wall of silence built around it all, people don't know what ‘normal’ grief feels or looks like. By telling our stories to one another, I think we can feel much less alone, we can know that somebody else is going through the same thing.
“In the doula world we call it bearing witness to someone's pain: feeling seen and feeling heard. Because in this situation when somebody is dying or when somebody has died, you can't fix it, you can't make it better. But what you can do is be there and listen. And I think that's the power of storytelling.”
Grief is a topic of conversation as taboo as dying and death. Yet the advice from Louise and Anna remains the same: talking helps. Louise tells us what she has learned about grief and advises on how best to approach the topic with those who are grieving.
Understanding Traumatic Grief
Traumatic grief is the term used for the distress caused by a sudden or unexpected death. This often applies to Covid deaths, especially those within the first wave of the virus when there were no vaccinations to offer protection from its harmful effects. Louise shares experiences of people who would “go away in an ambulance because they couldn't breathe properly, and never come home.” Families were traumatised and struggled to come to terms with what had happened to their loved one: “The family couldn't go with them, they never saw them in hospital, and so they couldn't believe that the person was dead.”
The term, traumatic grief, holds weight for the grieving in situations like this as it places a meaning behind their emotions. Louise says, “It's really important to give [grieving people] the words to understand that they’re not abnormal: this is a really traumatic, and a really difficult thing to go through.”
What To Say When You Don’t Know What To Say
It’s normal to struggle to find the right words to say to someone who is grieving a loss. Louise explains, “The reason is partly because, as a society, we are really diverse: you have lots of different beliefs or no beliefs at all. Whereas previously, or in other cultures or communities, everyone would have a set of rituals and beliefs around death so it would be much easier to have a sort of stock phrase to use. Living in a diverse world where lots of people have no beliefs at all makes it really tricky to know exactly what to say. For example, some people find a lot of comfort if someone says, “he's in a better place now”. Other people are really horrified and upset by that.”
Louise suggests that it's better to say something than to say nothing at all: “Something as simple as I'm so sorry to hear about [name] and sharing a little memory about the person that has died.” It’s important to remember that you might not get it right first time, but that’s okay too. Louise says, “Don’t be scared of awkwardness or silence [and] be prepared to apologise if you do say something which doesn't quite hit the mark.”
Avoid The “Stiff-Upper-Lip” Approach
The traditional response to mass fatality events in UK was to 'Keep Calm and Carry On'. Yet Louise believes that the British public have strayed away from this insular mindset in the age of Covid, which is a step in the right direction for dealing with grief. She says, “There's so much talk about mental health, getting support, talking about how you feel: it’s all very much in the collective consciousness. And grief as well has been in the collective consciousness over the last 18 months. We have used that word to describe not just how we feel after someone has died, but also how it feels to lose our jobs, to not be able to go away, to have weddings cancelled – it all comes under the umbrella of grief.
“I think one positive thing that's come out of this is that we have used the word – grief – and we have recognised it for what it is.”
There are great resources available to offer support throughout the grieving process in addition to local counsellors and therapists in your area.