Ambiguous Grief and Trauma – The journey for family carers of children with genetic syndromes

1. Ambiguous Grief and Trauma – The journey for family carers of children with genetic syndromes Evelyn Bugel SWAN at RCH November 10, 2014

2. Evelyn Bugel BA (Psych), Grad Dip (Psych) Post Grad Dip (Special Education) Advanced Diploma Gestalt Therapy www.evelynbugelpsychology.com evelyn_bugel@bigpond.com.au • Parent of Declan, 12 (ASD) and Alistair, 9 (NT) • Psychologist in private practice with a special interest and experience working with family carers • External provider with Carers Victoria’s National Carer Counselling Program

3. Why is this important ? • Family members of people with disabilities: an “at risk” group • Carer stress and mental health problems are associated with poor outcomes for the individuals receiving interventions. • Carers who are adequately supported feel more competent , are at less risk of depression and help their children achieve better outcomes Reference: Hastings and Beck (2004), Chambers (2001)

4. What is grief? A normal response to any type of loss that involves feelings of intense and chronic sorrow and involves a painful recognition of the discrepancy between reality and what continues to be dreamed of (Loos, 2002). Typically it is understood according to the model proposed by Kubler Ross in the 1960s Stages of Grief: Denial, anger, depression, bargaining and acceptance

5. An Alternate Model Families of children with a genetic condition causing health problems and cognitive difficulties deal with events that are not “final” The unfolding nature of a many conditions does not offer families the same opportunity for “acceptance” The experience of families is better described as “chronic sorrow” Goodman (1964), Solnikand Stark (1962)

6. Consequences of applying “stages” of grief model • Family members are encouraged to grieve in the same way one might grieve a death • Family members are seen as not having “accepted” the diagnosis • Family members feelings’ (to them and others) may seem “excessive”. • Professionals may coax families to “accept” the loss

7. If not “stages” then what?Alternate models of grief • Ambiguous Loss – because of the uncertainty of what has been lost • Frozen Grief – because of the way the complications to the grieving process can prompt some people to bury feelings • Disenfranchised Grief – because of the way parents and carers are not afforded the rituals that the community normally use to acknowledge major loss • Complicated/Complex Grief – because of the array of feelings that we have and how they can feel contradictory Bruce, E. and Shultz, C. (2001). Non-Finite Loss and Grief: A Psychoeducational Approach

8. How does the grief process become complicated? • Having been encouraged to “accept” a loss, family members’ feelings of sadness become a source of guilt or shame that is then kept hidden • Grieving can feel like being disloyal to a child that is also deeply loved • The focus is so fully on the child, treatments and intervention that there is no room for anything else

9. More factors that complicate grieving • Communities and cultures acknowledge disability in different ways • Partners may process grief differently • Mothers and fathers have been found to grieve differently with mothers reporting more intense feelings of grief than fathers.

10. What is trauma? An event is considered “traumatic” when it has been perceived by an individual to be threatening to self or others.

11. Criteria for the diagnosis of certain stress disorders, such as Acute Stress Disorder or Post Traumatic Stress Disorder include exposure to a traumatic event and Intrusive thoughts and memories Avoidance Changes to thoughts and mood from that which is typical for the person

12. FIGHT: Irritable, angry, defensive, blamingFLIGHT: Miss appointments, refuse offers of help, dismissive of expressions of concern, generally avoidantFREEZE: Shut down, overwhelmed, silent RECOGNISING TRAUMA

13. Other signs of trauma ….. - Feelings of fear (“panicky” feelings)- Feelings of helplessness (collapse)- Changes to thought and mood (“This is not like me”)- Intrusive thoughts and memories (remembering traumatic moments whether you wanted to or not)- “Avoidance” behaviours (to keep from being reminded of the trauma)- Looking for ways to feel “numb”

14. Mindfulness Mindfulness is paying attention to the present moment with openness, curiosity and an willingness to be with what is. Mindfulness can help carers begin to identify thoughts that cause distress and to feel less “at the mercy” of these distressing thoughts. Mindfulness can also help carers become more resilient to the stresses of caring and help carers become more aware of the choices they have regarding their responses to stressful situations.

15. How to “do” mindfulness Have a “mindful attitude” toward yourself and your experiences • Accepting or allowing whatever is there whenever it’s there to be there • Apply this attitude to both thoughts and feelings • Cultivate greater self-compassion (be your own “Dalai Lama”)

16. References Bruce, Elizabeth . (2000) Grief, trauma and parenting children with disability. Grief Matters: The Australian Journal of Grief and Bereavement, 2(3), 27-31. Miodrag, N and Hodapp, R. (2010) Chronic stress and health among parents of children with intellectual and developmental disabilities. Current Opinion in Psychiatry 23, 407–411. Hastings, R and Beck, A. (2004). Practitioner Review: Stress interventions for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry 45 (8), 1338-1349. Kübler-Ross, E. (1969) On Death and Dying, Routledge Goodman, D. (1964). Parenting an adult mentally retarded offspring. Smith College Studies in Social Work, 48, 209-234 Solnit, A. JH. & Stark, M.S. (1962). Mourning the birth of a defective child. Psychoanalytic Study of the Child, 16, 523-537