Trauma and Loss for Relative Caregiving Families

Deborah Langosch

Jewish Board of Family and Children’s Services, NY

March 14, 2012

Melinda_Perez-Porter / Hello RAPPs! Thank you so much for joining us for our chat on "Trauma and Loss for Relative Caregiving Families." A very special "thank you" as well to Deborah Langosch, your fellow RAPP from the Jewish Board of Family and Children's Services in NY! Please feel free to ask questions or post your comments and don't worry about typos - they will disappear in the transcript we will have available! Let's get started and thank you all once again for joining us!
Deblangosch / Thank you for inviting me today. We'll be "talking" about trauma and loss for kincare families. All children experience loss since they aren't with their parents. Traumatic loss is particularly challenging since it can be so disruptive.
Melinda_Perez-Porter / Deborah, can you give us some examples of loss/trauma we see with caregiver families?
Deblangosch / We’re learned that in order to help families we need to work with them to develop coping strategies before dealing with issues of mourning and loss. We see families who are coping with suicides, murders and many unexpected and sudden types of loss. What are some of the issues that your families face around traumatic loss?
Terry / We had one child who was always looking out the window. Grandma said he always said his mom would come get him.
Deblangosch / Often we see family members who are shut down because this is so overwhelming or are constantly concerned about their safety and feel panicky.
MichaelM / I have observed high levels of anxiety symptoms from the children. Also, I've seen and heard grandparents talk about the children's difficultly with adapting to change...there's an actual resistance that seems to create a real struggle for the entire family
Deblangosch / Yes, there can be lots of anxiety which they may not know how to manage. Have you found ways to help them with this? I also have some suggestions.
MichaelM / I am so grateful for new suggestions...I try to encourage grandparents to be open and willing to have open discussions with the children...even though it's such a struggle.
Deblangosch / Change can be very difficult because the children's lives have been so disrupted and they may be in new homes, neighborhoods, schools and away from parents.
MichaelM / It seems like openness and honesty can create some healing.
Deblangosch / Open and age-appropriate communication is very important.
Providing consistency also helps a lot. Teaching relaxation techniques and using expressive arts are beneficial too.
Cara_Kenien / That makes a lot of sense, Deborah.
Melinda_Perez-Porter / How can support groups help both family members cope? I saw from your PowerPoint that you said that adults and children mourn differently.
Deblangosch / Often, caregivers need an opportunity to talk with us about these experiences before they can find the words to talk to their relative children.
Julian / I have seen that as well.
Melinda_Perez-Porter / So the support groups give the caregivers an opportunity to talk about their loss and grief.
Deblangosch / Absolutely. It can normalize their experiences and universalize them so they don't feel alone. Regarding mourning, children tend to mourn in small, "pediatric" doses over a longer period of time than adults.
Melinda_Perez-Porter / Do children need to see a therapist? Should that be something caregivers do? Get them help or is it possible for caregivers to help the children or is it both?
Deblangosch / Even though I'm a therapist, we've learned that not all families need treatment. It depends on how they've coping and how much the losses are impacting their lives. It's very helpful when they're struggling and need support.
Julian / Right and as you mention in the hand out, there is a stigma to overcome as well with therapy. I have seen this in my work with families.
Cara_Kenien / Deborah, I love how you really build your suggestions upon and around the strength and resiliency model. How can we be sure that we are using strength based practices?

DeblangoschGood question regarding resiliency! It helps to ask families how they’ve coped with difficult situations in the past and what’s worked. I’d ask about their support networks and what they do for self-care.

Cara_KenienThat sounds great and very practical, thanks so much!

Deblangosch
Cara_Kenien
Deblangosch / Often our caregivers tend to the needs of their children and neglect their own needs. It's important to remind them that self-care is essential so they can remain attentive and help the children they're raising. It may be to go for a walk every day, talk to a close friend or go to their support groups. What other ideas do you have?
I agree, Deborah and see this play out with caregivers across the board.
Often we have to reframe that it’s a strength to ask for help and consider the cultural context for the family.
Julian / I think that’s really helpful. And I think a certain element of patience is needed as well, the reframing can take some time and that’s ok too.
Deblangosch / I agree about reframing. Often we can model what to say and give caregivers an opportunity to practice with us and find the language for constructive expression. When children grieve they often show this behaviorally instead of verbally so it can be easily misinterpreted.
Melinda_Perez-
Porter
Deblangosch / What kinds of things does psycho-education include?
Thanks for bringing up psycho-education since it's a very valuable tool. It's about providing information about what to expect, what is normative, and the range of responses to a loss, in this case. It opens the dialogue for communication. Mr. Rogers once said, "Anything mentionable is manageable" and I like to reference that to decrease secrets and make it safe to talk about these complicated issues.
Melinda_Perez
Porter / Oftentimes caregivers complain about children acting out but this can also be a sure sign that the child needs help as well, right Deborah?
MichaelM / That makes sense, Melinda.
Deblangosch / It should be assessed and depends on the extent of the acting-out. If the child is doing things that are unsafe then definitely they should be getting help. Also children may express suicidal
ideation after a loss and this needs timely response.
Melinda_Perez-Porter / You also mentioned in your handout that there are certain activities or techniques, like expressive arts, that help children cope – that can be done both at home or in a support group for children?
Deblangosch / Definitely – at home, in therapy, in support groups. Writing, drawing, music, puppets, dance and books on loss all help. I’ll send a bib to Melinda with good books on traumatic loss for children to be shared with all.
Melinda_Perez-Porter / That's great, Deborah, we'll share it - because if RAPPs have groups for children, maybe it’s a great idea to include those activities - they are not only fun, but can help children as well.
Deblangosch / Yes, one thing to caution about. You want to proceed slowly with expressive arts activities since they involve exposure and this can be overwhelming for a child if it’s not paced gradually.
MichaelM / The point you mentioned in your PowerPoint about a fear of opening the flood gates - I see this fear in my families. It can be a struggle getting the caregivers to take the plunge and open up sometimes.
Alex / Right, exactly....plus, there is so much value in acknowledging the sense that children are experiencing such complex issues. I think this all creates a nurturing and safe environment.
So great, thanks!
Deblangosch / You may also have found some excellent books as well.
Denyse
Melinda_Perez-Porter / I know this is referring to books and maybe you are moving on, but my favorite resource on this topic for children is "When Dinosaurs Die" by Marc Brown. It is simple, to the point, provides factual information and is a way children can understand and also provides some suggestions for remembrances and celebration of the departed person's life.
Thanks Denyse! That book sounds really interesting. If anyone has other book suggestions, please share them, we'll make sure to post them as well!
Melinda_Perez-Porter / I guess it’s easier to identify if a child needs additional help if, like Terry mentioned above, a child is often looking out a window hoping mom comes home or whose behavior is more violent or disruptive, but can't children grieve without showing many outward symptoms. And, if so, how can they be helped or, for RAPP purposes, identified?
Deblangosch / You want to proceed slowly with kin caregivers so they can feel safe and not get dysregulated or rely on maladaptive coping strategies like substance abuse to numb the pain. Another book we like a lot is: A Terrible Thing Happened" as it shares the struggles of the main character and has a good outcome. It's not specific so it can apply to many types of losses. We also want to be sure to think about the age, developmental phase of the child and their previous experiences with loss to guide us through this process of helping them.
Melinda_Perez-Porter / If children are not getting specific help, Deborah, how can our support groups for children help them?
Deblangosch / They can be tremendously helpful in that they serve as a safe, stabilizing place where things can get talked about, not get out of control and coping skills can be taught. We do a lot of work about how to identify feelings and constructive ways of expression.
Terry / I would also like to know concrete ways to help both families and children as my group does not specifically address loss and grief.
Deblangosch / Terry, what have you tried already?
Terry / I don't think we've really thought about it. We just have fun activities for children.
Deblangosch / You may want to gradually start talking about some of these topics: changes in their lives, what/who they can rely on, what strengths they have. You can adopt activities like drawing a safe place, safe person, identifying feeling zones in the body, writing a letter to someone they'd like to tell about their life ...
Terry / Thank you for the suggestions, we will try them!
Jennifer / Deborah, I'm glad you said what you did about support groups because many times caregivers will talk about their struggles and get help and advice from the others.
Deblangosch / Jennifer, you’re so right. Often they learn so much more from each other than from us and I see that as a successful group!
Cara_Kenien / I agree - support groups are so powerful on many levels.
Alex / These are all really helpful points and suggestions to think about.
Deblangosch / Terry, I missed your comment above and I think it's important for us and for caregivers to check in with children about how they're coping and feeling. It almost never hurts to ask and it can help so much.
Melinda_Perez-
Porter / Deborah, checking in is usually just talking to them, right? And maybe using books like the ones mentioned above to show them that other children also share the same feelings?
Deblangosch / A lot of grief goes underground especially if no one is talking about it.
Denyse / I so agree with Deborah that repeatedly checking in with families around loss is critical. When someone passes away, especially if due to HIV/AIDS, suicide, drug and alcohol use, many people don't say anything or offer comfort because they don't know what to say. The omission of caring (because we don't know how to respond) sends the message that the person who has passed was not worthy, or that their memory will become invisible.
Melinda_Perez-Porter / That's such a good point, Denyse.I think that makes it "doable" for a family. If they make sure they talk to the child, they can bring up any concerns at the group and hopefully get help if needed.
Deblangosch / Denyse, that's very true. These types of stigmatized losses can create a veil of silence where it feels shameful to talk about the loss which contributes to complicated grieving.
Denyse / A "veil of silence" - what a powerful statement...
Deblangosch / Are you seeing this much in your work?
Denyse / I think our support groups are so well established right now, that we have "sliced through" this veil! The families are incredibly supportive of each other and, of course, they all understand the stigmatized losses better than the general public. But, in my work overall I see it all too often.
Melinda_Perez-Porter / It also reminds us that saying things to kids like "I know how you feel" and "its been a while get over it," don't show support for the child and can result in losing that place of safety - they may then not feel comfortable grieving publicly.
Cara_Kenien / Sliced through the veil, I love it!
Deblangosch / Metaphors and images work so well which is why books and poetry can be so helpful. The handout has a sample of the kinds of responses that were helpful to kids around loss and those that aren't.
Cara_Kenien / It's such an important balance.... Deborah, as you've pointed out, with emphasizing the importance of using the strengths perspective, we can really support our families and children by recognizing them as the experts in their lives and with their feelings...We can ask the important questions and support them as they talk.
Deblangosch / I have a wonderful collection of poems called Giving SorrowWords that I use with families. I'll be glad to share how to receive this inexpensive book.
Melinda_Perez-Porter / I think that's right about support groups Deborah because when I visit and caregivers share, they get a lot of support and advice from their peers. Same with the children. Many RAPPs conduct concurrent groups and talk about the same or similar topics and then continue the conversation together - I think this all helps.
Deblangosch / Exactly, Cara.And then we need to be sure to take care of ourselves as well since this work is very meaningful but stressful at times too.
Cara_Kenien / So true and the self care is crucial. Thanks Deborah.
Denyse / Sounds great! I agree with Cara and I also feel that both adults and children can be helped recognize and express their feelings specifically through the use of children's literature. It is a very non-threatening way to approach the concept of feelings.
Deblangosch / We run concurrent groups for kids and caregivers that come together a few times over 8-10 weeks. When they're together, we ask them to bring inn a memento or picture of the deceased or write down questions in advance they'd like to talk about together. Sometimes they create a collage or work on an art project together.
Julian / That sounds like such a great plan. And writing down the questions in advance really helps I am sure.
Terry / It also sounds like a great way for children to see that the adult is also affected and grieving.
Deblangosch / It gives us a chance to think with them about the impact of the questions and what will be helpful.
Julian / Plus there is time for emotional prep around what is going to be discussed.
Deblangosch / That's true about the adult, but we also want to talk with the caregiver about how ready they are to do this and if they need some help first so they don't breakdown or overwhelm the child with unresolved grief.
Melinda_Perez-Porter / That's a good point, Debbie.Mention the three C's quickly!
Deblangosch / Communication, Consistency and Competency (supporting the caregivers ability to support their child).
Alex / Thank you so much, that's so great!
Deblangosch / These guiding principles can be very useful in our work.
MichaelM / What a great chat this has been, thank you :)
Denyse / Yes, indeed. Thank you so much.
Deblangosch / So glad!
Julian / Thx so much!
Deblangosch / My pleasure. Good luck with your work and If I can be of any further help, please let me know.
Melinda_Perez-Porter / Deborah, thank you so much for spending time with us and helping us appreciate the impact of loss on the families we serve. RAPPs can make a difference and do so every day! Thank you all for joining us and there will be a transcript of the session available soon and we will also share information on the resources mentioned. Thank you again, Deborah!
Cara_Kenien / Thank you thank you, Deborah!
Edna / Thank you Deborah!
Deblangosch / I greatly appreciated your comments and questions.
Terry / Thanks for your insight Deborah
Jennifer / Thank you Deborah! Lots to think about!
Helen / I appreciate your time and experience!

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