Why self-care is important for carers as well as the suddenly bereaved

Following a sudden death there must be a primary focus on the care and support of those who have been bereaved, but it’s important those caring for them look after themselves too. In this blog, Caroline Perry discusses why self-care is important, and how carers can both help ensure bereaved people are cared for and take care of their own wellbeing too.

If you’re caring for someone who has been suddenly bereaved, it’s important that you not only ensure that person is taken care of, but also that you take care of yourself. During the COVID-19 pandemic this is more important than ever, with social distancing, restrictions and lockdowns meaning many of us don’t have access to our usual support systems.

Whether you’re a family member, friend, neighbour or professional, you are undertaking an important role supporting someone at a very sad time, through an experience that can be challenging; even more so during a pandemic.

Many suddenly bereaved people want face-to-face support, or to hug other loved ones, but during a pandemic this may not be possible if you aren’t self-isolating with them. However there are ways you can provide support and comfort through phone calls, video calls or simply regular messages, depending on how the bereaved person would prefer to be contacted.

It’s also possible to check that someone’s basic care needs are being met, and to spot warning signs, even if you’re supporting them remotely. Gentle questioning may help you be assured that they are ok, or to identify things they need help with.

It’s important to check they have access to food and money to look after themselves. If they need help, for example with shopping or making meals, this might be something you can help with, or you could find support for them from local organisations, for example organisations that deliver meals to people.

You can also check whether they have a network of family and friends who can support them, and check on their health, for example do they feel well, unwell or sound as though they are poorly.

If something concerns you, you should do something. If you work or volunteer for an organisation, report your concerns to your manager. If you aren’t linked to an organisation, seek medical help or help from a relevant government agency.

If the person says they don’t want help, but it is clear to you they may need help, it is important to seek it. A person’s safety is the most important thing.

Supporting someone who has been suddenly bereaved can also be upsetting for you if you’re providing support. Try to be aware of your own needs and feelings during this time. If you look after yourself, you can look after others, better.

It is important to make time for yourself and have a self-care plan. Include spending some time doing your favourite things, such as reading, cooking, listening to music or doing some meditation or yoga. Make time to be by yourself, or with others you love who are around you at this time.

Only offer support you can reasonably give, and consider in advance who can support you, when you may need support. Find out about other support services too, so that you can access extra support for the bereaved person if needed and/or find a service that allows you to step back when you need to.

Find more information on supporting someone bereaved at this time of pandemic, and taking care of yourself.

About the author

Caroline Perry is the New Zealand director for Brake, the road safety charity. As a Brake member of staff she is also involved in supporting the work of Sudden. Sudden is a global initiative to help people bereaved by any sudden cause and also to help the professional standards of their carers. Brake is a road safety charity providing the National Road Victim Service in the UK for families bereaved by death on the road, including an acclaimed and government-backed national helpline and information service. Brake also operates globally and has a domestic branch in New Zealand.

Manchester ‘Supporting suddenly bereaved children and young people’ 2018 seminar – resources for delegates

Manchester ‘Supporting suddenly bereaved children and young people’ seminar

During this seminar, expert speakers and practitioners provided best practice advice and practical information about supporting children and young people who have been suddenly bereaved.

We have made available PDFs of the PowerPoint presentations and handouts from the day, for your reference:

This event was kindly sponsored by Slater and Gordon Lawyers.

Birmingham ‘Supporting suddenly bereaved children and young people’ 2018 seminar – resources for delegates

Birmingham ‘Supporting suddenly bereaved children and young people’ seminar

During this seminar, expert speakers and practitioners provided best practice advice and practical information about supporting children and young people who have been suddenly bereaved.

We have made available PDFs of the PowerPoint presentations and handouts from the day, for your reference:

This event was kindly sponsored by Slater and Gordon Lawyers.

London ‘Supporting suddenly bereaved children and young people’ 2018 seminar – resources for delegates

London ‘Supporting suddenly bereaved children and young people’ seminar

During this seminar, expert speakers and practitioners provided best practice advice and practical information about supporting children and young people who have been suddenly bereaved.

We have made available PDFs of the PowerPoint presentations and handouts from the day, for your reference:

This event was kindly sponsored by Slater and Gordon Lawyers.

Support literature

Support literature

Sudden provides free books for adults and children on coping with a sudden bereavement.

Whether you have been bereaved yourself, or are caring for someone who has, contact us for copies.

When someone you love dies suddenly – book for adults

This book by Sudden is for people who have suffered the shattering experience of a loved one dying suddenly.

It aims to help you understand emotions and feelings commonly suffered. It provides straightforward advice on how to cope and who can help you to recover.

Someone has died suddenly – book for children

Acclaimed picture book for children to read with their carer when someone has died suddenly.

This book provides simple explanations of what happens after a sudden death, in language that children can easily understand.

Helping suddenly bereaved children

As a parent or carer, it can be particularly difficult to know what to say to bereaved children or how to behave around them.

This guide that accompanies the children’s book helps adults to provide support to bereaved children.

Our children’s support literature is kindly sponsored by
Co-op Funeralcare.

Activities to help children through a bereavement

Activities to help children through a bereavement

Doing things to remember someone who has died can help a child to feel a bit better. It’s also a good way for them to spend time with other loved ones. Here are some simple suggestions for activities that a bereaved child’s parent or carer could carry out with them:

My memory pictures

Art and creative activities are a great way for children to remember someone. The child could draw or paint a picture featuring things that the person who died loved, for example their favourite flower, colour, foods, or places.

If they don’t want to draw or paint, they could print off favourite photos of the person and put them in a big clip frame – or use a wooden frame which they can paint and decorate using the favourite colour of the person who died.

Get out and get active

Getting out and being active can help a child through bereavement and it’s a good opportunity to spend time with other loved ones. It’s also really important for children’s physical and emotional wellbeing. It can help to remember that the person who has died would want them to be enjoying life. This could include simple activities like going to the park to play football or on the swings, walking to the library to take out a favourite book, or going for a bike ride on a local cycle path.

Things to do at home

Sometimes, children might not feel like leaving the home. If so, there are some easy activities to keep busy and active without leaving the house.

Dig and weed the garden, sow seeds and plant plants. It’s a great way to get active outdoors without having to leave the home, and can help to take the child’s mind off negative emotions. If you’ve got space, you could plant a bush or tree in memory of the person who has died. Make sure the child is helped to look after any plants that need ongoing care.

Baking cakes or buns can be a simple and cheap way to keep busy around the house, and is a chance for a parent or guardian to spend some time with the child. The child could decorate the cakes with faces using sweets or icing, showing how they are feeling that day – sad or happy. It’s a good way to have a discussion about their emotions and to help them through any negative ones they are encountering.

For more ideas for activities to help children cope with bereavement order your copy of Someone has died suddenly.

Caring for bereaved children at school

Caring for bereaved children at school

Some schools have excellent policies and services to support children who have been bereaved. Sadly, other schools don’t. The most important thing for carers and parents is to keep talking to the school and reminding them of the child’s bereavement and the need for the school to be sensitive to their needs and their vulnerability.

The school could do simple things such as letting the child know they can go to a particular member of staff and a quiet room any time they like if they want to cry.

You can remind teachers to watch out for potentially insensitive situations. For example, if a child’s mother has died, and the class is making Mother’s Day cards, it could be highly distressing if not handled properly. In such situations, the best thing is for the teacher to talk to the child and their carers in advance to decide what to do. A child might want to be included and still make a card in memory of their mum.

Teachers and schools can ensure they are equipped to support children who are suddenly bereaved by attending our events for professionals and ordering copies of Someone has died suddenly and the accompanying booklet for carers such as teachers.

Caring for bereaved children after a couple of months

Caring for bereaved children after a couple of months

After a couple of months it is normal for a child’s more extreme symptoms to begin to subside. The deep grief remains, but the initial shock has subsided. On the other hand, it is also common to find at any time that symptoms haven’t subsided, or they have got worse, or there are new symptoms. These symptoms could include trouble eating or sleeping, terrible dreams, feeling angry, crying all the time, inability to work or concentration problems at school, being jumpy or scared to go out, or finding it hard to talk.

Whatever the symptoms, if a child isn’t beginning to feel a little better, emotionally or physically, then now is the time to seek an assessment of needs from a medical professional. In the UK, a family doctor should be able to arrange for an assessment for conditions such as Post Traumatic Stress Disorder or depression. Many people bereaved suddenly develop conditions such as these and it is important to get a condition diagnosed and treated. The most common and effective form of treatment following a sudden death for both children and adults isn’t drugs; it’s a series of confidential conversations with an expert therapist, who can help someone to talk about what has happened to them and find a way forward to be happy again.

You can read UK government guidelines on treatment for Post Traumatic Stress Disorder here.

As well as seeking help through a GP, specialist bereavement charities for children and families can offer ongoing support and help.

Order the book Someone has died suddenly, a vital resource to help children affected by a sudden bereavement.

Supporting suddenly bereaved children and young people, June and July 2016

Supporting suddenly bereaved children and young people, June and July 2016

This report highlights research and best practice as presented at two Sudden seminars on supporting suddenly bereaved children and young people, held in June and July 2016. The seminars were kindly sponsored by Slater and Gordon Lawyers.

The report contains:

Meet the expert: PTSD following sudden bereavement

Meet the expert: PTSD following sudden bereavement

Dr Stephen Regel, Principal Cognitive Behavioural Psychotherapist
The Centre for Trauma Resilience and Growth

Sudden bereavement is a type of trauma. Although it affects everyone differently there are common factors that influence a person’s reaction:

  • Whether or not the person was present at their loved one’s death
  • If they were present, were they also injured or at threat of an injury
  • Whether they were present but unconscious; if someone is present but unconscious for more than 15 minutes of the incident they are significantly less likely to develop PTSD than if they were present and conscious

It is of course possible for someone to develop PTSD as the result of witnessing the death of a stranger; it is not just those who are bereaved that are affected. It is also possible for a sudden bereavement to affect a whole community, or even a country as in the case of the 2011 Norwegian shootings.

Sudden bereavement often results in psychological and emotional problems including but not limited to PTSD. When someone is seen from very early on after a trauma they are less likely to develop long term problems; when someone’s access to support is delayed until a while after the incident they normally require treatment over a much longer period of time.

However it can be very difficult to access support from the National Health Service (NHS) following a sudden bereavement because bereavement itself isn’t an illness, it is a cause. The Centre for Trauma Resilience and Growth sees victims on average three to four years after the traumatic incident because a lot of people are too scared to ask for help or don’t realise they need it. Those that do seek support find it very difficult to get an NHS referral. People bereaved in a high profile case (e.g. the 2004 tsunami) that attracts the attention of politics or the media are far more likely to receive support.

[Dr Regel then presented a series of case studies illustrating the difficulties of getting bereavement support through the NHS.]

NICE guidelines

The National Institute for Health and Clinical Excellence is a special health authority within the English NHS produces guidance on clinical best practice and the treatments and care available and appropriate for different illnesses.

Key points raised in the NICE guidelines:

  • Eye Movement Desensitization and Reprocessing (EMDR) is recognised as an effective technique, but not a treatment in itself.
  • Trauma focussed Cognitive Behavioural Therapy (CBT) is recommended.
  • ‘Safe practice’ should be exercised; you should not expose a patient to something until they are ready.
  • ‘Watchful waiting’ is the practice of observing the patient’s progress without intervening; the NICE guidelines do not recommend early interventions.

PTSD treatments

Psychological debriefing is a controversial early intervention in which a trauma sufferer is asked to talk about their experience shortly after the incident occurs. The technique is advised against by the NICE guidelines, as two studies have suggested it exacerbates trauma and can even retraumatise the patient.

However, psychological debriefing is intended to be used with high risk groups exposed to trauma regularly such as emergency services or army personnel and to be done as a group exercise; this is not reflected in the two studies that question the technique.

Also, when supporting a patient and giving them guidance it is important that you treat them in the context of their individual problem and therefore it is necessary to know as much as possible about their problem to enable proper support.

Trauma Risk Management (TRiM) is a technique often used by the armed forces to overcome the problem of soldiers preferring to talk to their peers after a trauma rather than trained professionals. In each unit at least one soldier undergoes TRiM training; if soldiers from their unit are then involved in a trauma they are invited to speak informally with their TRiM trained peer, who assesses how they are coping and identifies individuals at risk of developing problems.

The TRiM technique is now being used outside the armed forces; a good source of free TRiM training resources is www.ifrc.org.

Peer support groups – regular, informal support groups can help patients to normalise their experience and express themselves. This is not the same as a therapy group; it is just a forum in which patients can talk to others with similar experiences.

Imaginal exposure – when someone experiences a trauma the brain tries to pack the memories away. Therapy is the process of unpacking and repacking the trauma; it is unhealthy to leave trauma packed away and untouched forever (avoidance) but it is equally unhealthy for trauma to be unpacked all the time as this prevents people moving on. They need to have access to their trauma but also learn to be in control of it so it can’t spill out all the time.

Imaginal exposure can help PTSD sufferers to unpack and repack – to process their feelings. The patient is asked to recount their trauma in the present tense first person into a video camera and then to watch back their testimony.

This is a type of exposure tactic; through exposure to things that trigger their trauma the patient is able to come to terms with the triggers and not slip into avoidance behaviours. This is like ‘emotional physiotherapy’; it is painful at first but gets easier and is necessary in making progress.

Common responses to bereavement

Avoidance behaviours – in most severe traumas avoidance occurs, in the immediate aftermath of the incident this is understandable but if it continues beyond three weeks there is potentially a problem. If avoidance continues beyond three months it is a strong indication that the individual will develop severe PTSD further down the line. People can become adept at engineering their whole life to avoid anything that might trigger their trauma; the longer they successfully do this for, the more they suffer when something eventually does trigger the trauma. The sooner after an incident a patient is seen the better as they can be treated before avoidance behaviours take hold. The key to preventing long term avoidance is maintaining routine and structure in daily life; this is the best source of long term stability.

Women are more proactive in seeking help, men tend more to avoid and deny issues.

Guilt is a very common response when someone is bereaved suddenly and traumatically. Guilt takes two main forms:

  • Survivors’ guilt- someone is guilty that they live on when their loved one is gone -‘it should have been me’
  • Guilt of omission/ permission- someone feels that their actions are the cause of their loved one’s death -‘if only I had/ hadn’t done…’

In the first three months after an incident, the following reactions are common:

  • Sorrow
  • Anger
  • Helplessness
  • Guilt
  • Numbness
  • Tension
  • Restlessness
  • Fear
  • Anxiety
  • Inability to sleep
  • Inability to concentrate
  • Mental avoidance of the incident

In the initial stages of grief these reactions are natural, they are only an issue if they become debilitating. If these responses continue beyond three months it is an indication of deeper problems. For patients who don’t receive treatment until three or four years after an incident, the problems are very entrenched.

The trajectory of a victim’s recovery is influenced by:

  • Pre-trauma risk factors – if stressors and psychological problems predate a trauma, long term problems are more likely. Also, acute or accumulative stressors, substance misuse, severity of event, and subjective life threat.
  • Support mechanisms in place at the time of the incident – whether or not someone has an existing social support network (close family etc) in place is a key factor in whether or not they suffer long term problems
  • Post-trauma risk factors – physical injury, bereavement, perceived lack of justice, financial considerations, context and scale of event, accumulative trauma, litigation and role of media.

Although there are guidelines for how quickly a victim’s recovery will progress, nothing is predictable and each case must be treated individually. Patients seen at the Trauma Centre within six months of the event tend to need an average of 15 sessions; the sooner someone is seen the easier it is to predict the trajectory of their grief.

Other factors affecting recovery:

  • Proximity to the event
  • Pre trauma risk factors
  • Size of event
  • Role of media (NB this is strongly linked to the size of the event; the larger it is the more media interest it generates)
  • Whether or not someone knows the perpetrator/ person responsible for the loss of the loved one can hugely effect their grief (this is quite particular to road death and homicide)

Peri-traumatic risk factors:

  • Peri traumatic risk factors are the responses/ circumstances evident at the time of the traumatic event.
  • Peritraumatic risk factors are the circumstances at the time of the trauma.

Non-peri-traumatic risk factors:

  • The presence of non-peri-traumatic risk factors indicates an individual is more likely to develop severe problems further down the line.

The most significant risk factor affecting the victim’s grief is structured social support, something that professional help cannot provide. When the bereaved victim doesn’t have a safety net of close family and friends and a supportive community they are at higher risk of developing PTSD.

The role of the therapist

When seeing a new patient it is important to develop a clear picture of their pre and post trauma risk factors as soon as possible; this will give a good idea of the treatment required. Discuss common responses to trauma early on in a patient’s treatment to normalise their feelings and reassure them that their reaction is not unusual and they shouldn’t be ashamed or scared.

The therapist’s role is to liberate the patient to speak and to put the patient’s feelings and experiences into context; this normalisation helps people to process their grief and attendant grief.

Patients are vulnerable and they need their therapist to be supportive; the therapist’s reaction to a patient’s testimony should not ask anything of the patient emotionally. The therapist’s office should be a space where the victim feels comfortable

The therapist’s reaction to a patient’s testimony can inhibit the patient’s progress. If the therapist appears shocked or upset this can make the patient feel upset or guilty and discourage them from sharing their story for fear of making other people feel bad. Alternatively, if a therapist appears disinterested or uncaring the patient may feel they’re uncaring and be discouraged from opening up.

A therapist should develop a good connection with their patient and be sensitive and empathetic whilst remaining objective and professional. However, sensitivity should not extend to avoiding discussion of difficult topics.

It is also important to provide patients with the rationale for their treatment. Don’t just treat the patient but explain why you’re treating them in a sort of way; the problem you’re addressing and how the treatment will help to overcome it. For example in the case of exposure tactics, explain the danger of avoidance behaviours becoming habit and how exposure to triggers combats this danger.

The therapist’s office should be a space in which the victim can express themself without guilt or apology.