How do you support individuals with death and bereavement? During my time working for Sense, I’ve gained a lot of experience supporting people with complex communication needs, but also learned a lot about how we can approach this often sensitive subject.
Everyone living has to deal with death. At some point in our lives we will be confronted by our own mortality and the mortality of those close to us. It’s a normal part of life, it’s normal to fear death and it’s normal to grieve – but for those who have experienced the death of someone close, it feels far from normal.
Although everyone grieves in their own way, and many researchers and writers have explored this, it has often been suggested that there are four main stages of mourning:
- Accepting the reality of the loss – realising that the person has died and won’t be coming back. People may well feel numb and in shock at first.
- Working through the pain of grief – allowing time to experience feelings and thoughts including sadness, anger and depression.
- Learning to live without the dead person – which may involve taking on new roles or learning new skills.
- Moving on with life – finding a new place in your emotional life for the person who died so that you can adapt to a different future without their physical presence.
Reactions are individual and can be very different
Our personal reactions to a death can vary from minute to minute, from hour to hour and can go on for some time. Reactions are individual and can be very different depending on many factors: including our personality, how close we were to the person who has died, cultural factors and how much support we have around us.
This is particularly true of the people that Sense supports, as they have very different and individual needs. Their communication, the challenges they face and level of understanding can vary considerably.
Supporting someone with complex communication needs who is bereaving
Every person needs a tailor-made approach if we are to support them to understand death, dying and their own feelings related to loss.
However, it is important to acknowledge that despite our best endeavours, some of the people with complex communication needs who I support, might not fully grasp this concept, or be able to clearly communicate their feelings.
Some may find it difficult to understand the concept of past, present and future, for example, so the idea that someone has ‘gone’ may be very hard to grasp. We might not know the extent of someone’s understanding, but we need to do our utmost to support them with this most significant life event.
For example, a young man in his twenties who lives in Sense’s accommodation services, and has complex communication needs, is visited by his parents regularly. He was particularly close to his father.
They had spent a lot of time together when he was growing up and his father always made sure he was involved in family gatherings and trips out. It was then discovered that his father had a terminal illness and was not expected to live longer than a year.
In circumstances like this, it is important for staff to find out whether the individual has had any experiences of death and losses in the past, how this was explained to them and how they reacted?
This needs to be gathered sensitively from people who know the person well – such as their family, and staff who work closely with the individual who know their individual ways of giving and receiving communication, their personality and how they express their emotions.
It can also be helpful to look at how someone dealt with other types of losses in the past, such as moving home, changes in staff or the death of a pet.
Breaking the news
It will never be easy to tell someone that a loved one is going to die, or has died – and when it comes to supporting disabled people with complex communication needs, the approach taken should be tailored to the person’s needs. It can help if someone who is particularly good at communicating with the individual gives the news to them.
Sometimes the person who has died may be one of the other people they share a house with, or who attends their day service. They may have known them for many years and may be upset and disorientated that they are no longer around but don’t understand why.
As well as using language it can often be helpful to use photographs and objects to help someone to understand. Non-verbal communication, such as facial expression or gestures can reinforce the information given, and touch can be important to some people as a sign of reassurance.
It is best not to communicate too quickly and allow time for each piece of information to sink in. It is also important to use short clear sentences that are not ambiguous. For example, if you describe death as being “like a sleep” it could make the individual frightened of going to sleep.
Clear and direct messages – such as “Your mother is very ill and she will die soon” or “You will not see your father again” – can seem rather brutal but may be the best way to ensure that someone has some real understanding of what is happening.
On the other hand, it may well take some time for someone to grasp what is happening – as it does for anyone – and helping them to come to terms with this will be an ongoing process. Information may well need to be repeated or adapted for their specific communication needs and level of understanding.
One person was helped to understand that her grandma had died by using photographs. She keeps a photo album of special events and people in her life.
When her grandma died, her photo was moved to a separate album, along with other pictures and reminders of her life, to help her to understand the change that had taken place.
It is important to observe and listen to the individual, in order to gauge if they need more time to process what they have been told and to ask questions. We should be prepared for the subject to discussed again in the future.
Talking about death is not easy for anyone. We might avoid talking to someone about their relative who has died because we don’t want to upset them, or because we don’t want to get upset ourselves.
However, it is vital that people have the opportunity to express their grief or this can lead to other problems in the future such as depression or behavioural issues.
Funerals and memorials
Funerals and memorials can have a place in helping disabled people with complex needs to accept and understand what has happened.
The funeral ceremony focuses on the life and personality of the deceased, and it gives mourners time to consider their own thoughts, feelings and memories of the individual.
This is often the time when people move from shock and denial towards other stages of grief such as sadness and loss. There is a change from having a relationship with the person to having memories of them.
Memorials can be another way of helping people to cope with their loss, and may be especially helpful for some of the individuals that Sense supports. These can take many forms – from public to private – depending on the needs of the individuals.
This might include:
- Planting a tree or bush in the garden
- Making a memory box or scrapbook of items related to the memory of the person.
- Making and displaying a piece of artwork with the person’s name on it to celebrate their life.
- Having a special trip out or go for a walk in their memory.
Sometimes these memorials may be very personal. For example, someone may be comforted by a piece of clothing, like a scarf, that still carries the smell of the person that died.
The impact on carers, health professionals and staff
One aspect of bereavement that is sometimes overlooked is the impact on staff when someone that they support dies. When you are caring for and supporting someone it is natural that you form a relationship with them and grieve when that person dies.
If a staff member has worked alongside that person for many years they may have seen the changes and the progress they have made since coming into a Sense service and it can be very tough to lose them.
One member of staff said: “I think working with a deafblind individual for long periods you believe they are almost immortal as they are part of your job, then it’s quite a shock when they die. It’s as traumatic as losing a family member.”
This shock might be compounded if the member of staff has had to medically intervene in order to try and save their life – for example, by carrying out cardio pulmonary resuscitation (CPR).
They, and other staff who have witnessed this, may be quite traumatised by this; they may feel guilty, that they should have done more. “I found it so overwhelming” said one member of staff, “but I carried on to the best of my ability”.
“Clearing out the room is upsetting for staff and other residents, and to see an empty room, and their place at the table.” said another staff member.
The Social Care Institute for Excellence has provided good practice points for supporting staff in care homes when a resident dies.
This includes acknowledging that staff may be affected by a death and need time to deal with feelings of bereavement, including being able to talk openly about their feelings and emotions.
It is important to recognise that grief may take some time to surface following a death.
As well as support from managers, Sense has an employee assistance programme which offers counselling support which is available 24 hours a day, 365 days a year.
A final word
This is not an easy subject to talk and write about and I am conscious that I have only just scratched the surface.
The important thing is that we continue to talk, share experiences and develop good practice in dealing with death, dying and bereavement.
The death of a family member or friend is a difficult experience to go through.
Making a donation in their memory is a special way to celebrate their life, and makes a big difference to many children and adults with complex communication needs.