Similarities and differences between bereaved parents and parents of a person with a very severe brain injury: what can we do to help?

As a clinical neuropsychologist, I work with people who have sustained a brain injury and their families. Some of these patients will have sustained a very severe injury and remain in a prolonged disorder of consciousness (PDOC). I also happen to be a bereaved parent: my oldest child, Sarah, died in a white water rafting accident in Peru in May 2000 at the age of 36 years (Wilson, 2020). Consequently, I often feel a close connection with the families of patients who have sustained a brain injury, particularly those in a PDOC, and this has led me to reflect upon how the two groups might be similar and how they might differ.

Ostensibly, there are similarities and differences faced by parents whose loved one has died and parents whose loved one has survived a very severe brain injury. Both have lost the person they once knew, both grieve, may be filled with regret and/or guilt, face levels of stress and changes in well being, and both are likely to obtain support from others in the same situation.

The main difference is that families of a very severely brain-injured person face an ambiguous loss: theirs is a daily loss without an immediate end. Their loved one is alive and has a sleep/wake cycle, moves, makes noises and reacts to stimuli. Despite this, the loved one does not initiate communication or social interaction and may appear unreactive to anything meaningful. The brain-injured person may also appear to be in pain or distress and show signs of sadness, even at times shedding tears. Experiencing no interaction, communication or behaviour challenges our understanding of people, and as, some report, “life itself.” Family members in these circumstances cannot grieve their loss fully; they may constantly be searching for answers and this complicates and delays the process of mourning, sometimes resulting in unresolved anguish.

While formal and certainly more abundant assistance and support is available to bereaved parents through organizations such as The Compassionate Friends, and the Encephalitis Society (which supports families who have lost someone because of encephalitis), there do not appear to be similar organizations for severely brain-damaged people – apart from an on-line support group run by Celia and Jenny Kitzinger, and of course the work of clinical psychologists and neuropsychologists that is professionally available to both groups initially.

My colleague, Anita Rose, who is also a clinical neuropsychologist, indicated that one-third of the caregivers of people with a severe traumatic brain injury have clinically significant symptoms of mood disorders such as depression and anxiety and they can sometimes be described as suffering “prolonged grief disorder.” Family members show high levels of loss and distress, both physical and emotional changes in well being, high levels of carer burden and lowered levels of coping. Dr Rose goes on to say that support for these families involves good communication and the provision of information about the clinical state of the patient, the prognosis, available treatments, the treatment plan and any necessary investigations. This is in addition to practical and emotional support. Should the family have questions, names of appropriate team members should be provided and information as to how to access these team members supplied. Families should also be involved in goal setting and care planning and they should be informed of the evaluation of progress; they should be involved in joint assessments where appropriate; and be involved in decisions made in the patient's best interests. After all, families know the patients better than the staff looking after them. Information fact sheets and booklets should be made available as well as signposts to services and how to meet other families in a similar situation if this is considered desirable. Other practical support may include assistance with managing finances, helping with housing and care homes and transport. The psychologist should always have available, paper handkerchiefs, a cup of tea and a listening ear.

Family support may be facilitated by staff or experienced family members who can create informal opportunities to build contacts, arrange family meetings, guide access to peer support either face to face or via online resources. Families can be shown how to engage in therapy for the patient: for example, teaching them how to give a gentle massage or stretching exercises; conducting basic daily care tasks; and providing stimulation. Families may also need to be shown how to take respite and have the confidence to leave their loved one when they need a break or need to go home.

Psychologists can, of course, offer counselling and support although family members may not be ready for this in the early stages. This is also true of bereaved parents, who may not be ready to accept help early on; so for both groups the offer of support should be repeated after an interval. Counselling to families of people in a PDOC should be provided by professionals with understanding of the condition so that facts not fiction are provided

While these kinds of support from professionals are important, many of them can be continued and extended within self-help groups for the bereaved. This, then, may be another difference. Those with a severe brain injury still require professional care whereas the dead person obviously has no need of this. I suggest, however, that both groups, are changed by the experience. TCF is a club whose members seem to have, despite the most awful losses, grown as human beings, exhibiting dignity and exceptional empathy to others faced with the same agonizing loss. This may well be true for the families of those with a very severe brain injury if they are given similar opportunities to meet together.

It is not only very severe brain injury that changes outlook on life: Richard Houghton (2018) in a book about sudden cardiac arrest (SCA) and, himself a survivor with very mild, if any, brain injury, says “I also gained some things that I wouldn't have done apart from the SCA. I have learned humility for those less fortunate than me and gained greater compassion” (P61). It is worth noting that this term, compassion, refers to empathy and feeling with others and is not pity: it is regarded as the highest of the virtues in all major religious traditions.

As a bereaved parent I needed certain things soon after my daughter died and I am not sure whether these needs are similar or different for other families. I needed to read what other bereaved parents felt and thought. It was important to learn from others with the same experience. I needed to know there were good people in the world and that it was possible to lead a meaningful life after losing a child.

In summary, as a bereaved parent, I learned the following things:

Grief isn't one constant feeling. It comes in huge waves that wash over one.

The waves decrease in frequency over time but can still be as overwhelming as ever.

It is still possible to have moments where one can smile, feel hungry, do “normal” things even early on.

Grief is exhausting and it slows one's cognitive functioning.

There is an immediate bond with other bereaved parents (it crosses all barriers)

A great gift, early on is to let us talk and let us cry,

Don't say “I don't know what to say” – if you know the deceased person tell some anecdote (I remember when …). If you don't know the person say “tell me about (XX) what was s/he like?”

Don't say “I couldn't live with it.” We HAVE to live with it - there is no choice.

Don't say “Have you achieved closure?” This is one of the expressions most hated by bereaved parents because they don't want to forget.

If you can't speak, a gentle touch may suffice to show your compassion

One worries less about unimportant things. Our priorities changed.

Most people were good – some didn't cope

Some people one didn't expect much from came up trumps.

Someone said to us early on “Your address book will change” and it has.

Good and bad things in the early days are remembered with heightened awareness

Letting us come to terms in our own way and at our own speed is important.

We are all part of a terrible yet special club that no one wants to be in but we need each other.

When we are with others in the same situation, we don't have to hide our feelings; we don't have to wonder “do they know.” Everyone's in a similar boat.

One final area where I do not know if this is a similarity or a difference is that all bereaved parents have an “at least”

“At least she didn't die in agony”

“At least he died at home”

“At least he saw his brother's wedding”

“At least we had a body to bury”

One has to deal with the hand that has been dealt and this is true of both groups.

I end with a quote by Haruki Murakami from the 2018 Cardiac Arrest book as this seems to sum up the plight of all families facing a huge life-changing event.

“And once the storm is over, you won't remember how you made it through, how you managed to survive. You won't even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won't be the same person who walked in. That's what this storm's all about.”