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When a loved one dies with pulmonary fibrosis

There’s no right or wrong way to grieve as everyone copes with bereavement differently. However, regardless of your coping strategy, we realise you are likely to be experiencing difficult emotions. We’re here for you, and whilst there’s no easy fix, we’ve gathered some resources to support you through your grief.

What is grief?

Grief can look and feel different for everyone. You might experience:

Lots of different emotions: overwhelm, frustration, shame, anger, guilt, sadness
Preoccupation with the person you have lost
Loss of concentration.
Disinterest in others and daily activities
Feeling exhausted.

Grief is often most intense immediately after the bereavement but remember that you’re unlikely to feel this way forever. Whilst intense feelings can come back at certain times like Christmas or birthdays, many people find that over time they experience fewer negative emotions and can enjoy positive memories of their loved one.

Sometimes, you may not feel grief after the loss of a loved one. You may even feel a sense of relief or comfort if the person had been suffering for a long time prior to their death. However you feel, it’s okay.

Making sense of your grief

Many people talk about grieving as a ‘process’ that changes over time. A psychiatrist, Elizabeth Kübler-Ross, described five different stages of grief in a model that is used by many healthcare professionals and people experiencing grief.

The five stages of grief model

Denial - 'this isn't happening'

People might feel confused shocked or fearful.

Anger - 'why is this happening?'

People might feel angry at themselves, at the person who has died, or at the circumstances.

Bargaining - 'what can I do?'

It's normal to think about how the situation could be changed.

Depression - 'it's too late now'

The finality of loss can be difficult to cope with. This can bring feelings of hopelessness.

Acceptance - 'I can carry on'

Many people continue to remember their loved one whilst living full and happy lives

Why this can help

An explanation of your experience can help to untangle the different emotions and thoughts that you're experiencing. It can also help you feel less alone knowing that what you are experiencing is normal and shared by many others.

Remember that the five stages of grief model is just one person’s idea, so don’t worry if you don’t relate to it. The stages won’t necessarily happen in the same order for everybody. Or you might not experience any or some of the stages at all.

Talking to others about experiences of grief may help you to make sense of what you’re feeling and to work through it.

Continuing your life with grief

The grieving process can include finding different ways to connect to your loved one who has died. Whilst many aspects of your relationship can’t continue, lots of people find ways to build a different kind of connection through memories and remembrance. This might include:

Visiting their grave and laying flowers or other gifts.
Sharing memories through talking or looking at photographs.
Dedicating something in their memory. For example, a tree, bench or anything of significance.
Contributing to a cause or activity they were passionate about.
Creating a memorabilia box or collection. This could include possessions that were important to them, letters or photographs.
Creating on online memorial tribute at Much Loved. You can add pictures, music and video, as well as asking people to donate to a chosen cause.
Writing them a letter.

How to support someone who is grieving

The most important things you can do to help someone who is grieving are to let them know you are there for them and ask them what you can do to support them. Do they want to talk about their loved one, or would they prefer the distraction of discussing other things? Do they want company or to be alone? Everyone’s different so it’s best to ask them directly if you can. Remember that their needs will likely change over time as their grief progresses.

Get support

There are lots of options of support after someone you love dies. If your loved one died under the care of a hospice, they may be able to support you in your bereavement. Cruse Bereavement care offers a chatline, whilst The Good Grief Trust hosts an extensive range of information, resources and services. You can also find local bereavement support services on AtaLoss.

Visit your GP

If you are struggling with bereavement and you feel in need of support, contact your local GP.

Support line

You can also call or email our support line, run by a specialist nurse and trained volunteers with lived experience of PF.

Support Groups

Many people find it helpful to carry on going to their pulmonary fibrosis (PF) support group after the death of a loved one from PF. If you haven't attended one before, we have a tool to find your nearest support group. Bereaved carers are welcome at support groups, and we have support groups that are specifically for carers and bereaved carers.

Connect with us on social media

We aim to create a community atmosphere on our social media platforms, where you can feel informed and supported in your PF journey. You can connect with others affected by PF, and this continues after a loved one dies.

You can connect with us on Facebook, Twitter and Instagram

Grief Chat

Grief chat is a webchat service that provides emotional support, giving you access to trained bereavement counsellors and referrals to other specialist bereavement services. It is an online chat available from 9am to 9pm, Monday to Friday. Find out more and access Grief Chat here.

Remember

Losing someone you love can be a painful experience, but you are not alone. The team at Action for Pulmonary Fibrosis are here to support you.

Our website and resources provide general information only. We cannot provide medical advice, treatment or prescriptions, nor can we assess/decide what services or clinicians you should be referred to. Support with these matters will need to be provided by your existing healthcare professional teams.

APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on our website or in our resources.

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