Dying Matters Week – Helping you talk about death

This year’s Dying Matters Week (6-12 May) will explore the way we talk about death and dying. Our presence and words can build bridges of connection and comfort, as Chaplain Sarah Bell explains:

“I trained as a chaplain and grief educator after working for 33 years as a speech and language therapist.

From an early age, my personal life has been peppered with loss and I’ve always felt drawn to supporting people through adversity. So, when someone suggested that hospice chaplain work might be right for me, it seemed like the perfect combination of my personal and professional experience.

It is an honour and privilege to share the journey with people during illness, at the end of life and with families who are then bereaved. We are here for all people of all faiths, no faith and all those in between – whatever they do or don’t believe.

As a society, we’re not very good at talking about grief – so often people are reluctant to express how they are truly feeling.

The job of a chaplain is to provide a confidential, safe sanctuary where they can fully express their emotions, not just the ones that are acceptable to them, others around them, or society. The way we talk about dying is important and our role is to listen without judgment, without minimising, comparing it to any other loss or trying to fix the grief. It is important to fully witness someone’s loss.

No right way to grieve

There is no right or wrong way to grieve, and we all experience grief in our own way. Even within a family, we might be mourning the same person but in totally different ways. Somebody has lost a mum, somebody has lost a wife, somebody has lost a daughter. I’d equate it to being in the same swimming pool of grief together yet everyone swimming in their own lane. You can’t expect others to grieve in your way, or you in theirs.

Most of us who have experienced grief know that it changes not only day to day, but moment to moment. One day can feel like a year. I’d encourage people to talk about what’s going on for them in the moment and take the day moment by moment, which can feel more bearable. Our feelings can change from relief to anger, to crying, to acceptance, to denial or guilt even in a short time. Although there are identified stages of grief, these do not necessarily follow a progress in a linear fashion, beginning to end. In reality, grief will always be present, but it does change over time. Different stages of grief might come to the fore at different times.

Usually, we can’t heal from something unless we feel it and face it – but this can only start when someone feels ready. When it’s the right time it can be very helpful for people to explore their feelings and not bottle them up. Seeking support can be daunting, but having someone to talk to helps a great deal and our counsellors do an amazing job.

Words can build bridges

If someone you know is struggling with a bereavement, the most important thing is to show up, be present and sit with them in their grief.

There is no shame in not knowing what to say or worrying that you’re saying the wrong thing. However, try to think of your words as building bridges to facilitate conversation and validate what they are feeling. Saying something such as “It’s good to see you. It’s heartbreaking to hear what’s happened to you” or “It’s tragic, what you are going through” can help to open up the interaction and build connection. I try to avoid saying “at least” (things like “at least she got to a good age”) because that minimises the magnitude of grief.

There is a personal connection with our loved one’s names, so I always their name when I’m speaking with a grieving person. By openly using their name you are acknowledging that they existed, that they mattered, and that it’s okay to talk about them.

Death often brings up the big questions of life and in my job, I often find that people want to explore their own thoughts or fears about what happens when we die. They might also be considering whether there is a life after death.

Planning for the future

A large part of our role is journeying alongside people with a life-limiting illness. They’re often losing their identity of being well, they might be unable to work, look after family, do hobbies and relationships can change. There’s so much loss that comes before death, which is challenging as they can’t be the person they have always been. There is a lot of work we can do about how to cope with that sense of diminishing self and reconcile ourselves to that changing identity.

I often encourage families to discuss funeral planning ahead of time. I’ve planned my own funeral, even though I’m not ill, because the family stress/conflict that can come up when there are no plans can be quite difficult at an already tough time. We’re so good at planning for births and weddings, but we tend to avoid planning for our own deaths. Planning a wonderful, personal funeral makes it seem less daunting and scary. Then you can file it, forget about it, and get on with enjoying the rest of your life. It can be a difficult subject to raise, but often the planning itself opens the door to conversations about what is important to the person and how they want to be honoured. Recently, I was discussing with a patient what readings he would like, and he chose the passage about love from Corinthians Chapter 13. It brought him great comfort, so now I read it to him every time I visit.  Sometimes people will dictate a letter to me, which I hold in confidence until the funeral. It’s like they are giving a final message to their loved ones, in their own words.

Strength and support

To help facilitate conversations about death and dying, I lead support groups for local bereaved people. They are open to everyone, whether or not they have been under the care of St Barnabas. It’s an opportunity to meet other people walking the same path as you while exploring your grief in a structured, supported way.

The way we talk about dying matters. Grief matters. But what matters most is that we’re talking about it at all.

About Dying Matters Week

Dying Matters Week is an awareness campaign set up by Hospice UK, the aim is to encourage more people, from all communities, to get talking about death and dying. Dying Matters Week was first held in 2009, and each year there’s a different theme which encourages us to look into different aspects of this subject. The week aims to spread awareness that talking about death, dying and bereavement is healthy, and destigmatize this sensitive topic. In the past, the week has focused on loss in the workplace and how to have difficult conversations with loved ones.

HospiceUK is a charity who work for the benefit of people affected by death and dying, collaborating with hospice members and other partners who work in end of life care.