A Heart for Children: Supporting Adult Caregivers of Grieving Children Oakwood Health System Dearborn, Michigan

1. A Heart for Children: Supporting Adult Caregivers of Grieving Children Oakwood Health SystemDearborn, Michigan Beverly M. Beltramo, MA, MS, BCC Chris introduce us and welcomeChris introduce us and welcome

2. Our Objectives ChrisChris

3. Explore skills to support adults who are caring for a grieving child Share some resources you may find helpful Identify the unique needs of the grieving child. �Childhood grief 101�

4. Some background� As a young chaplain, it seemed like over and over I found myself being asked the question� �How do I tell the children?� In ER after a heart attack or sudden death� in the oncology unit� in OB after the loss of a baby� Losing someone you love�especially suddenly or traumatically�is a very helpless feeling for most people. Things can feel very out of control. For parents, not knowing what to say or how to help their children cope only intensified those feelings I remember wanting so badly to be able to help those parents help their children�but I didn�t know what to tell them. So I began to read, to look for resources which I could offer�and I learned that there were a lot of books written for children, but very few written for caring adults�books which could help grieving parents and grandparents and aunts and uncles and teachers learn ways they could help a child they cared about as they grieved the loss of someone they love. Little by little I learned how different children�s grief is from adult grief�I learned how poorly most of us understand that, and I wanted to be able to do better. And so �A Heart for Children� was created. This is a resource we offer our families when there is a child who will be affected by the loss of a patient. In ER after a heart attack or sudden death� in the oncology unit� in OB after the loss of a baby� Losing someone you love�especially suddenly or traumatically�is a very helpless feeling for most people. Things can feel very out of control. For parents, not knowing what to say or how to help their children cope only intensified those feelings I remember wanting so badly to be able to help those parents help their children�but I didn�t know what to tell them. So I began to read, to look for resources which I could offer�and I learned that there were a lot of books written for children, but very few written for caring adults�books which could help grieving parents and grandparents and aunts and uncles and teachers learn ways they could help a child they cared about as they grieved the loss of someone they love. Little by little I learned how different children�s grief is from adult grief�I learned how poorly most of us understand that, and I wanted to be able to do better. And so �A Heart for Children� was created. This is a resource we offer our families when there is a child who will be affected by the loss of a patient.

5. Sandy�s Story Heart attack Initial grief, shock, horror� Then� �How do I tell my girls��(two dtrs age 3 & 9)� Walked her through the book� sat together�practiced what she would say Heart attack Initial grief, shock, horror� Then� �How do I tell my girls��(two dtrs age 3 & 9)� Walked her through the book� sat together�practiced what she would say

6. Some sobering numbers� 4.8 million children under 18 (about 1 in 20) are grieving the death of a parent. (Children�s Grief Ed. Assoc., childgrief.org) This does NOT include millions of children grieving the loss of grandparents, siblings, or friends. ChrisChris

7. 80% of Americans now die in hospitals The Healthcare community must: 1. find ways to support and include children. 2. empower & teach caring adults how to help the child(ren) they love. CHRIS Death has changed�but we haven�t necessarily changed. Death used to be a family event. Now it is a health care event. What does this mean for families? Children? CHRIS Death has changed�but we haven�t necessarily changed. Death used to be a family event. Now it is a health care event. What does this mean for families? Children?

8. Children are different from adults� (CHRIS)(CHRIS)

9. � Children�s grief is different from adult grief. Certainly there are many things about grief that are universal� we all may have similar FEELINGS� but in children those feelings may LOOK very different� (CHRIS)Certainly there are many things about grief that are universal� we all may have similar FEELINGS� but in children those feelings may LOOK very different� (CHRIS)

10. Factors that Complicate Loss Experienced by Children Our desire to protect them �attempts to protect children from pain may possibly do more harm�separating them from loved ones when they need them most� (Foley, T. 2004) Adult�s good intentions �The Queen� (CHRIS)(CHRIS)

11. Death is the new �sex.� (Gordon & Klass, 1979) Just because adults don�t talk about death �doesn�t mean we aren�t communicating�� (Worden,W., on Hospice.net) Children are left to �go it alone� when they most need the help and reassurance of those they love (CHRIS) Children are wonderful observers� many adults have a hard time with death so they assume children will too what do we do� we send them away, we send them to the neighbors or to a relative�adults try to �be strong�� don�t cry in front of the kids�(CHRIS) Children are wonderful observers� many adults have a hard time with death so they assume children will too what do we do� we send them away, we send them to the neighbors or to a relative�adults try to �be strong�� don�t cry in front of the kids�

12. � �we are powerless to control the losses�our children may need to face. But by honoring their inner wisdom, providing mentorship, and creating safe havens for expression, we can empower them to become more capable and more caring human beings.� Linda Goldman, Children Also Grieve (CHRIS)(CHRIS)

13. Re-Grieving: Unique to Children ��children will grieve within the confines of their developmental stage, and then re-grieve the same loss again when they are older in a more developmentally advanced manner.� (Schupp, L. 2004) �I cannot overstate the role that re-grieving plays in the developmental life of kids.� (Trozzi, M. 1999) BEV OK� so what does this mean? For example a little girl loses her brother when she is 5 �and experiences the loss as a 5 yr old �but then she will re-grieve his loss at other significant periods in her life: when she starts school, maybe the first time she spends a weekend with Grandma and Grandpa, when she learns to ride a bike, when she graduates�from middle school�and high school... from college. �and perhaps even again when she gets married or gets her first job. At each significant developmental stage or milestone she may re-experience the loss� she may go right back to the beginning, almost as though the loss were new. Adults don�t do this! We are basically who we are�BEV OK� so what does this mean? For example a little girl loses her brother when she is 5 �and experiences the loss as a 5 yr old �but then she will re-grieve his loss at other significant periods in her life: when she starts school, maybe the first time she spends a weekend with Grandma and Grandpa, when she learns to ride a bike, when she graduates�from middle school�and high school... from college. �and perhaps even again when she gets married or gets her first job. At each significant developmental stage or milestone she may re-experience the loss� she may go right back to the beginning, almost as though the loss were new. Adults don�t do this! We are basically who we are�

14. Risk Factors for Complicated Grief When a child is grieving�usually an adult who loves them is grieving too. Greatest risk factor for complicated grief is because a grieving parent cannot meet the day to day needs of a grieving child. (Tremblay & Israel, 1998) (BEV) When we look at factors for complicated grief in adults we look at things like Excessive dependency on the person who died History of depression or anxiety Sudden death or suicide But in children, those risk factors are quite different. First of all, if child has lost someone important, chances are, so have the important adults in that child�s life If the child has lost a sibling, their parents have lost a child If the child has lost a parent, the surviving parent has lost a spouse, or even if the child has lost a beloved grandparent, a parent has lost THEIR parent. George Tremblay and Allan Israel did a study looking at children�s adjustment after the death of a parent. They found that, essentially, the greatest risk factor for complicated grief is because a grieving parent cannot meet the day to day needs of a grieving child. In children the GREATEST risk factor is simply an inability to get basic needs met... When their parent or other caregiving adult is simply unable to meet the child�s needs this can place that child at risk for a complicated course of grief. Some children will actually put their grief on �hold� remaining stoic and not dealing with feelings until they feel �safe�..until they feel they have adults in their life who are able to care and address both their physical and emotional needs � (BEV) When we look at factors for complicated grief in adults we look at things like Excessive dependency on the person who died History of depression or anxiety Sudden death or suicide But in children, those risk factors are quite different. First of all, if child has lost someone important, chances are, so have the important adults in that child�s life If the child has lost a sibling, their parents have lost a child If the child has lost a parent, the surviving parent has lost a spouse, or even if the child has lost a beloved grandparent, a parent has lost THEIR parent. George Tremblay and Allan Israel did a study looking at children�s adjustment after the death of a parent. They found that, essentially, the greatest risk factor for complicated grief is because a grieving parent cannot meet the day to day needs of a grieving child. In children the GREATEST risk factor is simply an inability to get basic needs met... When their parent or other caregiving adult is simply unable to meet the child�s needs this can place that child at risk for a complicated course of grief. Some children will actually put their grief on �hold� remaining stoic and not dealing with feelings until they feel �safe�..until they feel they have adults in their life who are able to care and address both their physical and emotional needs �

15. Put your own oxygen mask on first�. BEV � The airlines have it right: how many of you flew down here? OK: what do they do after they show you how to put on your seat belt� they tell you to put your own oxygen mask on before attempting to place an oxygen mask on your children. Why? Because for most parents, the initial instinct is to take care of our CHILDREN first� But � when you have a parent who has experienced a profound loss, you have a parent who can�t breathe! And while oxygen masks aren�t going to be dropping from the ceiling, their first instinct will be to worry about their child�when they can barely cope with what they are dealing with. BEV � The airlines have it right: how many of you flew down here? OK: what do they do after they show you how to put on your seat belt� they tell you to put your own oxygen mask on before attempting to place an oxygen mask on your children. Why? Because for most parents, the initial instinct is to take care of our CHILDREN first� But � when you have a parent who has experienced a profound loss, you have a parent who can�t breathe! And while oxygen masks aren�t going to be dropping from the ceiling, their first instinct will be to worry about their child�when they can barely cope with what they are dealing with.

16. It takes a village� A network of caring adults �may be one of the most important interventions for a grieving child� (BEV) And so� it truly does take a village (no political implications here�). Children are dependent on adults� and when there is a profound loss in a family, it may take everything the parents have in them just to be able to get through each day. They need to look to that �village� of caring people around them, and around their child, to help them manage. And that village, that NETWORK can be anyone: family�but sometimes family either is not present, or is not helpful--so for some, it may also be neighbors, teachers, schoolmates parents�anyone who is important in their lives. Often WE see that network in the hospital�generally someone coming to the hospital, to gather with the family when a loved one is dying�many of those persons are already an important part of the family�s support network. (BEV) And so� it truly does take a village (no political implications here�). Children are dependent on adults� and when there is a profound loss in a family, it may take everything the parents have in them just to be able to get through each day. They need to look to that �village� of caring people around them, and around their child, to help them manage. And that village, that NETWORK can be anyone: family�but sometimes family either is not present, or is not helpful--so for some, it may also be neighbors, teachers, schoolmates parents�anyone who is important in their lives. Often WE see that network in the hospital�generally someone coming to the hospital, to gather with the family when a loved one is dying�many of those persons are already an important part of the family�s support network.

17. The BIG 4: What Can Help� �PAPA� PERMISSION to ask questions�and get HONEST ANSWERS ACCURATE & PROMPT information To PARTICIPATE ACCESS to a trusted adult Ok: so what can help, what can make a difference�and I know healthcare people just LOVE acronyms so here we go� PERMISSION to ask questions And get HONEST answers � And not just VERBAL permission� kids know who they can talk to and who they can�t� and kids are great at reading body language, so if someone says �Sure you can ask me anything�� but their body language and eyes are saying � but please, please please don�t�� they�ll pick up on that pretty quickly. We�ll talk about what those honest answers might sound like in a little bit�no more �God needed another angel in heaven� kind of thing! 2. ACCURATE and PROMPT information - No EUPHEMISMS please! We had a young father who had shot himself in the head�within earshot of his young children who were in the next room�.(suicide story) 3. To PARTICIPATE: to Attend the funeral, come to the hospital, even go to the funeral home� help choose readings or plan the funeral - ( if they want) 4. ACCESS to a trusted adult - Not too busy, not too distracted, not too overwhelmed by their own feelings, not a stranger�someone they can trust, someone who will have time for them�grandma�s are pretty good at this�Ok: so what can help, what can make a difference�and I know healthcare people just LOVE acronyms so here we go� PERMISSION to ask questions And get HONEST answers � And not just VERBAL permission� kids know who they can talk to and who they can�t� and kids are great at reading body language, so if someone says �Sure you can ask me anything�� but their body language and eyes are saying � but please, please please don�t�� they�ll pick up on that pretty quickly. We�ll talk about what those honest answers might sound like in a little bit�no more �God needed another angel in heaven� kind of thing! 2. ACCURATE and PROMPT information - No EUPHEMISMS please! We had a young father who had shot himself in the head�within earshot of his young children who were in the next room�.(suicide story) 3. To PARTICIPATE: to Attend the funeral, come to the hospital, even go to the funeral home� help choose readings or plan the funeral - ( if they want) 4. ACCESS to a trusted adult - Not too busy, not too distracted, not too overwhelmed by their own feelings, not a stranger�someone they can trust, someone who will have time for them�grandma�s are pretty good at this�

18. The OTHER 4: What DOESN�T Help� �So SAD� Stoicism (or) Secrecy Ambivalent feelings toward the deceased. Desire to protect the Adults in their life�and fears about their vulnerability So what doesn�t help� And yes, look: another acronym� STOICISM - Being strong is over rated�big time! Holding it all in and keeping a stiff upper lip just really is not all that helpful. SECRECY - How often do we see this? People whisper when kids come in the room, they avoid the truth. This can be especially true when someone is very sick and has a very poor diagnosis�but no one wants to let the kids know just how sick they are? Have any of you seen that scenario? In my experience�and I�m sure in a whole lot of yours too�kids are smarter than we give them credit for. Ambivalent Feelings toward the deceased � This can be a complicated one. Maybe if the relationship was a tense of difficult one, maybe a child knew that they were not grandpa�s favorite, or they had just had a huge fight with mom�or maybe they hadn�t really wanted that baby anyway� This is sometimes more common with teens because they are so immersed in that process of breaking away that when someone dies it can make things so painful for them. A DESIRE to protect the adults in their life and fears about their vulnerability � parents start to hear lots of questions about �are you OK� especially when they get sick or get a cold�or go in the hospital. � If X can die, what about Y So what doesn�t help� And yes, look: another acronym� STOICISM - Being strong is over rated�big time! Holding it all in and keeping a stiff upper lip just really is not all that helpful. SECRECY - How often do we see this? People whisper when kids come in the room, they avoid the truth. This can be especially true when someone is very sick and has a very poor diagnosis�but no one wants to let the kids know just how sick they are? Have any of you seen that scenario? In my experience�and I�m sure in a whole lot of yours too�kids are smarter than we give them credit for. Ambivalent Feelings toward the deceased � This can be a complicated one. Maybe if the relationship was a tense of difficult one, maybe a child knew that they were not grandpa�s favorite, or they had just had a huge fight with mom�or maybe they hadn�t really wanted that baby anyway� This is sometimes more common with teens because they are so immersed in that process of breaking away that when someone dies it can make things so painful for them. A DESIRE to protect the adults in their life and fears about their vulnerability � parents start to hear lots of questions about �are you OK� especially when they get sick or get a cold�or go in the hospital. � If X can die, what about Y

19. Two Things YOU need to remember� Unlike adults, young children may not realize they can survive without the person who has died. (Christian, L.G., 1997) Children are more vulnerable� emotionally, intellectually, physically�adults can intellectualize & draw on other losses�children cannot. (Wakenshaw, M., 2002) (BEV) That is an amazing thing to understand�some young children actually may believe that they cannot survive without the person who has died�especially if that person is a parent! . Children are more vulnerable�emotionally, intellectuially, and physically� The other thing we need to remember is that children experience world directly�through their senses�they experience the world through play, through experience, by touching and feeling and seeing and hearing. Adults can rationalize and intellectualize, we can emotionally and intellectually distance ourselves�children are not as able to do that. �Adults also have a context for loss. Generally by the time we have reached adult hood we have experienced other losses in our life�each previous loss helps us understand and gives us a context for the new loss we experience.(BEV) That is an amazing thing to understand�some young children actually may believe that they cannot survive without the person who has died�especially if that person is a parent! . Children are more vulnerable�emotionally, intellectuially, and physically� The other thing we need to remember is that children experience world directly�through their senses�they experience the world through play, through experience, by touching and feeling and seeing and hearing. Adults can rationalize and intellectualize, we can emotionally and intellectually distance ourselves�children are not as able to do that. �Adults also have a context for loss. Generally by the time we have reached adult hood we have experienced other losses in our life�each previous loss helps us understand and gives us a context for the new loss we experience.

20. Developmental Stages of Grief Sensorimotor ( < age 2) No understanding of death, react to changes in caregivers May change eating/sleeping patterns Increased fussiness or clinginess Need stable loving caregiver