2018 Epilepsy Pipeline Conference

Watch Community Day of the 2018 Edition of the Epilepsy Foundation Conference, Live from San Francisco on Saturday, February 24

WATCH LIVE

Experiencing and Coping with Grief

Candle
Thursday, December 17, 2015

Have you ever found yourself saying, “I think I am going crazy.” If so, you are not alone. It is common for bereaved people to feel this way, and I hear this from clients in my private practice and from families I support through the SUDEP Institute. Our society doesn’t have adequate benchmarks for what we might expect to experience in grief. There are certainly many suggestions from well-intentioned friends and family who do not know what to say.

I recently addressed an audience of physicians and researchers at the American Epilepsy Society Annual Meeting to help inform them about how to help the families in their care with expected and unexpected death and how to follow up. I would like to share with you some of the information I presented. My hope is to help you know that what you are experiencing and feeling is common and you are not crazy for feeling the way you do. I will also include what is reasonable to expect from your loved one’s medical providers in the event of a death.

Coping with Loss

The loss of a child can be the most intense grief for humans to experience. Coupled with sudden death, it leaves people very bewildered and in shock. This is also true for other relationship losses from sudden death. The anticipation of someone’s death affords grievers time to do and say things they don’t have the opportunity to address if the death is sudden. This does not mean there will be less pain if the death is anticipated, but most often there is less regret. Due to this difference, and because each loss is unique, do not try to compare yourself with other grievers.

How we cope and process a loss is dependent on many aspects in your life, including mental health history, resiliency skills, social support, gender, cause of death, personal death history (family and friends), cultural and religious background, and financial or social position. Read more about the many faces of grief.

Thanatologists bucket grief into two categories, normal grief and complicated grief. Normal grief affects the majority of survivors and is grief that has the absence of complications. Most people experiencing normal grief have a period of sorrow, numbness, and even guilt and anger. Gradually these feelings ease, and it's possible to accept loss and move forward.

For 1 to 2 out of every 10 bereaved people, feelings of loss are debilitating and don't improve even after time passes. This is known as complicated grief. In complicated grief, painful emotions are so long lasting and severe that people have trouble accepting the loss and resuming their own life.

Hallmarks of complicated grief are substantial unremitting distress, impaired daily function, severe separation distress, emotional numbness, inability to experience joy, self-imposed isolation, poor self-care, inability to foresee the future or desire to do so, and many physical complaints or illnesses.  Most of these symptoms would be considered normal in early grief, but should begin to lessen after 6 months.

There are unique features in the loss of a child that lead grief care providers to believe parental loss is more closely related to complicated grief. Death ends a life but not a relationship. We know that parents who are able to find a continuing bond with their child find great comfort in nurturing the new relationship, which in turns helps in their grief work. Read more about how love never dies.

What To Expect from Medical Providers

It is important to let medical providers know about the death of your loved one. Once they are aware of the loss, it is reasonable to expect your loved one’s neurologist, epileptologist, or primary care physician to follow up with you to help you understand what took place. They can provide information regarding cause of death, read autopsy reports, guide you to care pertaining to specific needs with which you are struggling, and provide referrals to local counseling and community resources. If they have not reached out to you, make an appointment to request help in processing your unanswered questions.

You are Not Crazy

Grief is not about “getting over” the loss of a loved one; it’s about reconciling, transforming the loss into your life, and learning how to live in the world without the one you loved so much.

Take action to seek the care you need in this process. The SUDEP Institute is here to help you. We know the holidays can be especially difficult. Here is a link with ways to help you cope with holiday grief. 

Wishing you a gentle, peaceful holiday season.

Linda Coughlin Brooks is the SUDEP Institute Bereavement Support Facilitator; she contributes regular articles as part of our bereavement support services. You can contact Linda at sudep@efa.org. Watch for future articles and learn more about our support for bereaved.

Authored by: Linda Coughlin Brooks RN | BSN | CT on 12/2015
Helpful Definitions
  • Grief: internal response to loss.
  • Sudden death: immediate, no time for psychological preparation or good-bye.
  • Mourning: grief gone public, external response to loss.
  • Bereavement: having suffered a loss.
  • Grief work: process and tasks to reconcile grief.
  • Secondary loss: social, financial, physical health, marital status, employment, etc.
  • Thanatology: the study of death, grief, and bereavement and the body of knowledge and research surrounding death in contemporary society.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline