Understanding the grief of those bereaved by epilepsy
[Part 1: Facts; Osland K]
Grief: Normal - Complicated - Delayed - PTSD. It hurts and we all deal with it in different ways.
All these grief reactions could easily be associated with the diagnosis of a long term condition such as epilepsy. People try to come to terms with leading a life that may be very different to the one planned. Families adjust and in some cases adapt to the role of carers; they try to understand a very complex condition and how to best care for the person with the diagnosis. This affects family, extended family, and friends; epilepsy is a difficult condition to understand.
Death in epilepsy brings with it another major loss impact. For most it is the worst loss they could ever have imagined. It is therefore fair to say that the bereaved can exhibit extreme symptoms, similar to those who have experienced multiple losses, and they need to be cared for in a similar way.
As his partner who was there at the time of the seizure, I am now withdrawing from work and education until I can come to terms with what has happened. I am also going for counselling for bereavement and PTSD. I had planned my life around him, which has now all changed. I am also moving house and job as a direct result. [O]
He was a beautiful, bubbly 15 month old baby/toddler. He leaves a 10 year old brother, 8 year old sister and another sister, who was only 6 weeks old, when he died. The impact on our lives is absolutely devastating. People say that time heals, but we find that it is getting worse. We miss him every moment of every day. I get the two older children to school, but I've no idea how. Everyday tasks seem like mountains. I am seeing my GP regularly and taking anti-depressants. [C]
Many families will have understood the risk of seizures and of accidents but, even now, few are aware of the risk of Sudden Unexpected Death in Epilepsy (SUDEP). This lack of knowledge and awareness adds to the sense of guilt that can already be overwhelming.
We have never got over the fact that we were unaware of SUDEP. I believe if we had the knowledge about SUDEP it would of reduced the feeling of guilt that we were not able to protect him. [H]
I thought he could die of epilepsy by banging his head or having a seizure that lasts longer than 5 minutes, I had no clue at all about SUDEP. Never ever heard of it. The day he died, I died too. I'll never get over his loss. I feel that, as his mum, I should of known about SUDEP. I feel I let him down. [J]
The unexpectedness of SUDEP, accidents; suicide and other causes of epilepsy-related death also impacts on how people deal with grief. They are robbed of the chance of saying goodbye; of saying the things that they always wanted to, and didn’t. They are robbed of opportunities, future hopes and dreams.
Grief is considered 'normal' when people appear to have no need to seek help from others, such as a support agency. However, lack of contact from people after a SUDEP death cannot be considered an indication of coping as many people are unaware of the support available, whether that be for emotional needs or to provide information regarding the death investigations.
As far back as 1995 people bereaved by epilepsy were reporting that they felt isolated and expressed feelings of guilt or blame and it was recommended that information be given about specialist groups and details of counselling where appropriate (Nashef et al., 1995). In 2002, interviews with 60 families saw relatives continuing to report the trauma of death. But, they reported positively when there was contact and signposting to support services (Kennelly & Riesel, 2002).
The response following a death can influence the impact on this vulnerable group and referral to a specialist service, such as that provided by SUDEP Action, is the key to minimising the impact on their future mental wellbeing.
Practical measures taken by the medical team in the aftermath that are viewed as helpful by families can make a difference, or at least ensure that the bereaved are not caused additional distress. These measures are as simple as contact from the medical team after a death and providing the bereaved with information on support services and the Epilepsy Deaths Register. It is, therefore, important that General Practitioners and Coroners who know of the death inform clinicians, so that they are able to write to families and offer contact. This would also ensure that appointment letters for the deceased are not sent to the next of kin, thus avoiding further upset.
What we know now, based on our 20 years of experience, is that people try to make sense of what has happened and look to make meaning out of such tragedy, so that the death wasn’t in vain. For bereaved parents especially, this is a difficult task.
‘To reinvest in life most parents must overcome the fear that they and others will forget their child. They must: reconstruct their experiences, both good and bad, as the child’s parent; find new ways to maintain a connection with their child; and incorporate what they have learned from parenthood and bereavement into a new identity which encompasses both caring for others and caring for themselves’ (Talbot, 2002).
Opportunities to participate in research can bring meaning and hope; families can be supported to donate organs and tissues for research, or to report the death to registries. The Epilepsy Deaths Register is an important outlet for most. It is somewhere to leave their story; a way to feel that the information they give will be used for the benefit of others for years to come.
Without this critical information, others will not be able to benefit. As painful as it is, the form is simple and the results captured are vital to research. [B]
Since the register was launched in 2013, it has received over 300 reports containing vital information for researchers and a database of families willing to be contacted for research. It is international, and although most reports so far have been from the UK, reports have been received from five countries and families have been informed of research initiatives in their own country where these exist. The register will not only help us to understand more about epilepsy deaths and ways that risks can be minimised, but also to understand more about the impact and how to develop services for people bereaved in this way.
Providing information can be cathartic as it allows for more telling of the story; however it can also re-traumatise as it transports the bereaved back to the event, as often the person reporting will be the one who found the deceased. It is, therefore, essential that the bereaved are guided through this process by experienced staff (Donner et al., 2015).
People who have reported to the register have described their loss in detail, in a way that only those who have experienced such loss could know:
A part of our life and family has been torn away from us. We are not whole anymore, or ever will be again. The physical pain and guilt are overwhelming, and we are only just becoming able to talk about him to each other after 16 months has passed. The impact is total and devastating, and has affected both the physical and mental health of the whole family. [E]
Learning from what people tell us is the only way that we can begin to understand what the impact of a SUDEP death is like. We know that it is different to many other sudden deaths and will remain so while there are no answers to what happened and why. We also know from what the bereaved tell us that, in most cases, knowing about the risk of SUDEP may have helped in some small way.
His death was such a shock to us, it was sudden, unexpected, and has completely ripped our family apart. We were so close and to live without him now, due to something that may be prevented is indescribable. It’s upsetting me to even write in this section, so I don’t feel I can say more at this time. The lack of support regarding his epilepsy and the sheer ignorance of SUDEP is something that has to be changed. [F]
SUDEP Action's services have been developed through working with people bereaved by epilepsy for over 20 years. The current team speak to people bereaved in this way every day and, although we have a good base, we are mindful that services need to evolve. Registers of death and family surveys will help us to do this and to provide services that are tailor-made.
The impact statements of the bereaved make difficult reading, but they are far more difficult to write, I am sure. So we owe it to them to listen, to take note and to adapt to their needs.
It is therefore fair to say that while the impact of a SUDEP death is not well understood, it remains an important topic for future research.
Deputy Chief Executive, SUDEP Action, UK
Dip Couns. Registered member MBACP
How to cite:
Osland K. Understanding the grief of those bereaved by epilepsy. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.