Tag Archives: Grief

Relieving the heavy burden of survivor guilt

By Lindsey Phillips June 27, 2019

Patience Carter took a bullet in the leg during the 2016 mass shooting at Pulse nightclub in Orlando, Florida — the second deadliest mass shooting in the United States — and survived. In a poem she wrote while recovering, Carter captured the devastating effects of survivor guilt: “The guilt of feeling lucky to be alive is heavy. It’s like the weight of the ocean’s walls crushing, uncontrolled by levees.”

Some people are able to grasp and admit that they are suffering from survivor guilt. Others, however, don’t necessarily realize they are wrestling with it, or they struggle to acknowledge carrying a sense of guilt. Luna Medina-Wolf, president of Professionals United 4 Parkland, was part of the mental health response team after the 2018 shooting at Marjory Stoneman Douglas High School in Parkland, Florida. She says many of the teachers sought help for their trauma after the shooting and, through therapy, also found they were dealing with survivor guilt for not being able to protect all of their students or for living when a child died.

Thus, Medina-Wolf, a licensed mental health counselor and the owner of Helping Moon Counseling, advises other clinicians to pay close attention to subtle comments clients make that may indicate they are struggling with survivor guilt. Rather than directly stating “I shouldn’t have survived,” a client may say, “How is it that my friend died?” This question infers the thought “And I didn’t die,” explains Medina-Wolf, a member of the American Counseling Association. Counselors must sharpen their listening skills and not be afraid to ask questions and dig deeper, she adds.

“Even when people are admitting [their guilt], when the words are coming out, they’re not realizing what it is that they’re admitting,” says Melissa Glaser, an ACA member in private practice in Connecticut. “They don’t know as they’re saying it that this is survivor’s guilt and that they’re stuck in a place that they can’t navigate out of.”

Glaser, a community response and recovery leader, served as director of the Newtown Recovery and Resiliency Team following the mass shooting at Sandy Hook Elementary School in 2012. She says counselors can listen for telltale comments that clients are struggling with survivor guilt. For example:

  • “I can’t accept the help because someone else needs it more than me.”
  • “I keep thinking if only I had …”
  • “Other people were so much more courageous while I was just hiding under the desk.”
  • “I became frozen and immobilized, and I still feel like I’m in that place. I’m so angry at myself that I couldn’t move or do something more.”
  • “Why did my child come home while another [parent’s] didn’t?”

Glaser is a consultant, a public speaker on trauma and relevant clinical applications, and a licensed professional counselor (LPC) who specializes in trauma and posttraumatic stress disorder (PTSD). She says survivor guilt typically manifests when someone feels a sense of responsibility for a loss or traumatic experience or when someone is grappling with questions of why and how (e.g., Why did this happen? Why did I react that way? How can I enjoy life when others can’t?). This is especially true if they think they could have done something differently to prevent or change the outcome.

“It’s really important for clinicians to help individuals get to a place where they are able to understand that they’ll never have the answers [and] that they can’t stay rooted on the why. … You have to find a way to project those whys into or onto something else,” Glaser says. “Otherwise, it can consume you, and it can become such a part of your identity.”

Glaser often suggests that clients picture themselves throwing their why questions into the air and they don’t come back down. If clients value spirituality, they can imagine that God is going to deal with the questions for a while, she adds.

“Survivor guilt is complicated. … [A] lot of the time, people will not even seek counseling because … they feel they don’t deserve to feel better or they’re not worthy of getting relief,” Medina-Wolf says.

She had a client who was diagnosed with cancer at the same time a friend was diagnosed. When the client survived and the friend didn’t, the client said, “My friend was such a good person. I’m not a good person like her. She volunteered and was kind to everybody. I’m not kind to people. Why did she die?”

Shame is also often intertwined with survivor guilt, adds Courtney Armstrong, an ACA member with a private practice, Real World Therapy, in Tennessee. “When there’s an element of survivor’s guilt on top of [grief], they feel ashamed or guilty for having any joy … because that’s disrespectful to this other person,” she explains. For example, when a child dies, parents may not want to change the child’s room because they feel guilty about moving forward and seemingly “dismissing” their child.

Other clients have told Armstrong, “I can’t be happy if [my loved one] isn’t here. … I feel bad for enjoying my life when they’re not here.”

The ripples and waves of guilt

Survivor guilt can set in immediately, or it can make its presence known months or even years later. This past March, roughly one year after the Stoneman Douglas High School shooting in Parkland, two survivors — Sydney Aiello and Calvin Desir — took their own lives. Aiello’s family reported that she suffered from survivor guilt. A few days later, Jeremy Richman, who lost his daughter in the 2012 Sandy Hook shooting and who later served as one of the keynote speakers at an ACA Conference, also died by suicide.

Richman, along with his wife, had created a foundation to prevent violence and build compassion through brain health research. Up until his death, Richman was actively working with Parkland families. Glaser says Richman was the last person most people would have expected to take his own life, but she stresses the importance of being aware that everybody is in a different place. Counselors “have to be well-versed in [the] signs and symptoms [of PTSD and survivor guilt] and never hesitate to reach out, never hesitate to ask questions,” she adds.

John Super, coordinator of the Community Counseling and Research Center and a lecturer of counselor education at the University of Central Florida, has observed that a person’s proximity to the traumatic event may affect how quickly he or she feels survivor guilt. After the Pulse nightclub shooting, Super, along with two other colleagues, helped organize a grassroots collaborative plan to offer supportive counseling services to those affected.

Super compares trauma and the potential for experiencing resulting survivor guilt with throwing a pebble into a lake: “It ripples out. Those [who] are the closest feel it the quickest and the strongest, but that doesn’t mean that people on the outside don’t feel it.”

Working closely with media reporters after the Pulse shooting, Super witnessed how they also experienced a sense of guilt. “Generally, reporters tend to see themselves as hardened — ‘We’ve seen and heard the worst of life so, obviously, we can’t have any guilt or emotional response to this,’” Super says. “And they would be the ones who buried it the deepest.” Some reporters felt guilt almost instantly because they knew they were prying into people’s lives or pushing people to comment who weren’t ready. Super noticed the guilt appeared later for other reporters, such as when they were writing their stories, editing a video or doing a follow-up special.

According to Jeffrey A. Lieberman, who chairs Columbia University’s psychiatry department, adolescents are particularly susceptible to the after-effects of trauma, including survivor guilt, because they are already dealing with massive changes as they move toward adulthood.

One way that counselors can help survivors is to normalize the guilt they may be feeling after a loss or traumatic event. Glaser, author of Healing a Community: Lessons for Recovery After a Large-Scale Trauma and co-author of the chapter “Disaster Recovery in Newtown: The Intermediate Phase” in the fourth edition of ACA’s Disaster Mental Health Counseling: A Guide to Preparing and Responding, points out that part of the recovery process is simply understanding what is involved. After the Sandy Hook shooting, she noticed a sense of relief when she told clients about common physical and emotional responses to trauma. The clients would look at her and say, “Oh my God! That’s why I feel the way I do. That’s why I can’t do that [activity] anymore.”

During the first session, or when clients are otherwise ready to absorb information, Medina-Wolf will show them a “window of tolerance” infographic created by the National Institute for the Clinical Application of Behavioral Medicine (see nicabm.com/tag/window-of-tolerance/). The infographic helps clients understand that what they are experiencing is a normal reaction to a traumatic event.

A person’s window of tolerance is the ideal place for coping with stressors and triggers, Medina-Wolf explains. Hyperarousal (e.g., hypervigilance, anxiety, panic, fear, racing thoughts) sits at one end of the window of tolerance, whereas hypoarousal (e.g., feelings of numbness, emptiness) sits on the other. The infographic illustrates how a traumatic experience can narrow a person’s window of tolerance, causing the person to feel dysregulated. Although most people commonly associate trauma symptoms with hyperarousal, many of the symptoms of survivor guilt — such as feeling helpless, unmotivated, immobilized, numb or disconnected — are components of hypoarousal, Medina-Wolf adds.

Medina-Wolf says she has had clients cry upon viewing the window of tolerance infographic because they realize they are not going crazy. “A lot of what people need in the beginning is just that reassurance that what they’re going through is symptoms of trauma,” she says. 

In addition, recovery from survivor guilt and trauma isn’t a linear process. The guilt and grief of the loss comes in waves, not stages, says Armstrong, author of Rethinking Trauma Treatment: Attachment, Memory Reconsolidation and Resilience and Transforming Traumatic Grief. The reality is that people who are grieving typically move back and forth between loss-orientated waves, in which they feel emotionally and physically drained, and restorative waves, in which they become more task-oriented and don’t dwell on the pain, she explains. Counselors should reassure clients that experiencing grief and guilt in waves is a normal part of the recovery process, Armstrong says. Otherwise, clients who have been feeling better may wonder what is happening when they suddenly find themselves back in a loss-oriented wave.

Of course, as both Armstrong and Medina-Wolf point out, when clients start feeling better and moving through their grief, this can actually cause their survivor guilt to flare more intensely because they don’t think they should be “over it” this quickly or because they feel guilty about being happy again.

Medina-Wolf, who is certified in eye movement desensitization and reprocessing (EMDR), uses recent traumatic episode protocol (R-TEP) for early EMDR intervention with clients. If clients don’t have any underlying issues, this protocol often helps them feel better in as little as three to five sessions lasting 90 minutes apiece. This sometimes prompts them to ask, “How can I feel so good so quickly?” she says.

Of course, some clients may feel that they have their survivor guilt and grief under control, only to turn on the news and be faced with the reality of another traumatic event transpiring. This can throw survivors back into a sense of guilt, distrust and questioning why, Glaser says.

“It isn’t that [trauma] is going to be erased,” she says. “It isn’t that they are going to recover and never be triggered again or never have a day or moment where they’re feeling that extreme sadness, or they’re feeling dysregulated again, or they’re feeling things are foggy. They will experience times like that for the rest of their lives. Hopefully, it’s fewer and further between as they work through this.”

When you can’t talk away the guilt

Glaser is trained in cognitive behavior therapy (CBT), but when it comes to collective community trauma, she has found that CBT may not be the most effective approach — or not effective at all — until the client is grounded.

Medina-Wolf agrees: “Communal trauma requires specific brain-based therapeutic techniques to really be able to break some of the negative schemas that were created due to the trauma. Just doing talk therapy would really take a long time until you would be able to heal. … [A] lot of times, it doesn’t take care of it all. You just learn to cope with it, but the damage is done. And if you don’t make sure to really work on the underlying schemas, then [they] may stay with [you] for the rest of your life.”

With survivor guilt, clients experience a disconnect between what they feel and what they know, Medina-Wolf explains. They may realize on a cognitive level there was nothing they could have done to prevent someone’s death, but they still feel differently.

Medina-Wolf uses a metaphor to explain to clients how trauma shapes the way they see the world and themselves in it. If they were to put on red-tinted sunglasses, she tells them, then everything would seem reddish; once they removed the sunglasses, they would realize it was just the glasses making things appear red. Similarly, being in a state of hyperarousal or hypoarousal makes it difficult to think rationally and process one’s thoughts and emotions, which may alter a person’s perceptions, Medina-Wolf says. Thus, bottom-up approaches such as EMDR, neurofeedback and brainspotting, which allow emotions to be processed at an unconscious level, work better to treat survivor guilt and other trauma-related symptoms than does a top-down approach such as CBT, which assumes that changing thoughts will change behavior and feelings, she explains.

With EMDR, the client and counselor first identify the negative self-belief (e.g., “I could have done something more to save the person’s life”). The client then thinks about this distressing feeling while the counselor uses bilateral simulation such as eye movement, tappers or bilateral music. This technique allows clients to open a door between their conscious and subconscious minds so that they are able to figure out what happened and rewire the way they understand it, Medina-Wolf explains. By identifying the negative self-belief and reprocessing and desensitizing what happened, clients can come to terms with what occurred in a more rational way and are more in control of their emotions when they are triggered, she continues.

For example, Medina-Wolf used EMDR R-TEP with a Parkland student who felt guilty for not saving another student’s life. First, they identified the client’s negative self-belief (“I should have done something more to save the student”) and the positive self-belief she wanted to work toward (“I did the best I could”). Medina-Wolf used tappers to administer bilateral simulation, and after three sessions, the client was able to reach that goal. Her thought process was more rational, she believed she had done the best she could, and she no longer felt guilty for the person’s death.

Individuals who experience survivor guilt, complicated grief or extreme trauma reactions may not be able to organize their thoughts to tell counselors what they need, Glaser says. For that reason, she also recommends using mind-body techniques such as meditation and music therapy to regulate and ground clients. This helps them to process their story and recover the vocabulary to talk about their experience. In many instances, clinicians may need to take a layered approach — for example, doing CBT in conjunction with tapping, art therapy or brainspotting.

Glaser often reverts to something rhythmic to help ground clients. For example, she may have them tap the side of a chair or their leg in a rhythmic way or take them on a walk outside (if they feel safe doing that). This simple rhythmic work helps get clients through the initial acute stage so they can begin to hear the counselor and produce the language they need to tell the counselor what they are feeling, Glaser explains.

In session, Medina-Wolf uses aromatherapy, meditation, breathing techniques and a box filled with fidget toys, pencils and squishy toys that clients can grab and play with while they are processing the event. She also encourages clients to supplement therapy with activities such as running, swimming or cycling that encourage bilateral simulation. 

Reimagining guilt

The attachment system often confuses what is imagined and what is real after a traumatic loss or event, points out Armstrong, founder of the Institute for Trauma Informed Hypnotherapy. Thus, she finds the imaginal conversation technique helpful for calming clients’ attachment systems and rewriting the negative thoughts connected to guilt.

With this technique, Armstrong has clients close their eyes and imagine what the person who died would say to them now from a place of enlightened awareness. Would the person want them to be tormented? Would this person tell them they don’t deserve to be alive? Imagining these conversations often helps clients obtain resolution, she says.

Armstrong allows clients to take the lead on these conversations. If they struggle, however, she might say, “I’m imagining they understand that you feel regret and they appreciate how much you care, but they think that being stuck in this depression and guilt isn’t the solution. It isn’t the best way to honor them.”

Armstrong had one client whose mother died by suicide and blamed the client in the suicide note. Because the client had a complicated relationship with her mother, she had a hard time being able to think with a clear, stable mind about her mother. Armstrong told the client she could instead imagine the way she would have liked her mother to be. With clients who are spiritual, counselors can have them imagine a conversation with God and God telling them everything is OK and they are not responsible for what happened, she adds.

Armstrong also has clients write letters to the deceased about their feelings. Then she has clients write an imagined response from the deceased (using their nondominant hand so they are less likely to edit it with their intellectual mind).

Counselors may also need to help clients address another common symptom of survivor guilt: recurring nightmares. Armstrong finds imagery rescripting helpful here. The technique involves rewriting or changing the ending of the nightmare. Clients first describe the nightmare to Armstrong, and then she asks how they would want to change it.

Armstrong had a client whose son died by suicide. The mother felt guilty for not somehow preventing his death — which she feared had caused him to go to hell — and for cremating him when she wasn’t sure he would have wanted that. This guilt culminated in a nightmare in which her son was asking for help as he was being rolled into a furnace, but she was unable to move her body to help him.

Armstrong asked the client, “What do you wish you could do in the dream?” The client responded that she wanted to move and go to her son. Armstrong then asked her to close her eyes and imagine a new ending — one in which her feet could move, she possessed the superpower to leave her body and go to her son, or her son was able to walk to her. The mother closed her eyes and reimagined the nightmare: The son got off the gurney and met her halfway. Then he embraced her and said, “I love you, Mom. I’m sorry I didn’t get to say goodbye. I’m going to be OK.” This revision brought an end to the client’s nightmares.

Counselors should have clients imagine their dreams and the new endings as vividly as possible, Armstrong advises. It typically requires going over this new ending several times in session and having clients imagine it again before bed. “If you just talk about the ending without imagining it as best you can, it won’t work because your emotional brain needs that imaginal experience,” Armstrong explains. The emotional brain learns through experiences, not reasoning, she says, so counselors must have clients create an experience that will allow them to heal.

Turning pain into power

According to Glaser, survivor guilt is rooted in pain. She advises counselors to help clients realize that “guilt in any of its forms is not really productive” — either for clients, for those around them or for those who are gone.

Medina-Wolf says clients often acknowledge being angry, depressed or anxious, even when guilt is the underlying cause of their problems, because it is more difficult to admit feeling guilty. “They feel like if they say it out loud, then maybe they are guilty,” she observes. “The guilt is so deep and they’re so [ashamed] of it because they’re so confident … in that negative distortion that it’s literally killing them from the inside.”

It matters where that guilt is coming from, Medina-Wolf continues. Do they think they didn’t do enough? Do they feel they are a bad person who shouldn’t have survived? Counselors can help clients process exactly what they are experiencing and identify the underlying cause of the guilt, she says.

Often, the guilt is based on a fear of not knowing how to go back into a world they no longer trust, Glaser says. So, instead, they hold on to the guilt and the awful feeling of responsibility. “When we understand that, we can start to make some inroads,” she continues. “We can help the client know where it’s coming from.”

Armstrong points out that pain is also a way for some clients to maintain a bond with their loved one, especially if they experienced the death of a child or someone’s death by suicide. Clients may assume that living without the pain would suggest their loved one’s life wasn’t important, she explains.

She encourages clients to honor their loved ones by letting their importance stay alive in a positive way. Armstrong provides a personal example: Her husband enjoyed watching Atlanta Braves baseball games with his mother, so after she died, he and Armstrong continued to go to games to honor her.

One of Armstrong’s clients had a son who died of an overdose. The client’s happiest memory was of camping in the Grand Canyon with his son, but after his son’s death, the father’s sadness and guilt stripped him of his motivation to hike and camp. Armstrong asked the client to imagine whether his son would want his father to stop hiking to prove his love for him or whether he might prefer that his father do something that served as a positive reminder of their time together. After the father’s perspective was changed through this imagined conversation, he took a small step forward by going hiking. Eventually, the father and his wife planned a trip to the Grand Canyon in their son’s honor and spread some of his ashes there.

Armstrong also recommends using the making living stories technique, in which she invites clients to bring in photos or share stories about the deceased. However, she has found that if she asks clients to tell her a story about the person, their minds often go blank. So, instead, Armstrong will ask about the deceased loved one’s favorite music or food, about a trip the client took with the person, or even what annoyed the client about the person. These silly or trivial questions often end up producing the best stories, she says.

Armstrong also prefaces this technique with the phrase “when you are ready” to ensure that discussing the loved one won’t create additional pain for the client. Counselors can put the invitation out there, and when clients are ready, they can work together to find ways to remember the loved one, she says.

There are times when the attempt to turn pain into something positive can result in others feeling even more guilt. For example, the media often praises survivors or those who have perished in mass shootings for their bravery, such as in the case of Kendrick Castillo, a student who died trying to subdue an active shooter in his school in Colorado this past May. Glaser acknowledges the desire to honor those who perform heroic acts, but she also notes this action can create something of an expectation among adolescents that it is their responsibility to react bravely and save others during a school shooting. It can also exacerbate survivor guilt among those who followed safety protocols and hid behind their desks.

Armstrong is impressed when survivors take a horrible situation and become empowered, such as with the Parkland students’ gun violence advocacy work. However, she also acknowledges that survivors sometimes need to work on healing themselves first.

One of Armstrong’s clients had a daughter who died of a childhood cancer. Soon after her daughter died, the hospital and cancer community approached the mother about having a fun run in honor of her daughter and to raise money to battle the specific type of cancer. Her daughter’s death was too fresh though, and the mother ended up experiencing survivor guilt for not wanting to help create a fun run in her daughter’s honor.

To help the client, Armstrong had the mother imagine what her daughter would say about the situation. Armstrong knew a little bit about the daughter’s personality, so she mentioned the daughter would probably say that even she didn’t have time for a fun run because she was still learning to navigate the afterlife. This helped the client put her guilt into perspective and focus her energy on healing herself.

“You don’t have to be a hero,” Armstrong often reminds clients. “If you decide to do something later, then that’s awesome. But [honoring a person’s life] may just be in little simple ways — I’m just going to take more time to appreciate a sunny day, be kinder to people or not take things for granted.”

Compassion for self, not just others

Often, it’s easier to offer compassion to others rather than to oneself. This may be especially true for counselors. Super, an ACA member who presented “The Shared Trauma of School Shootings and Their Impact on Counseling and Education” at the ACA 2019 Conference in New Orleans, admits he wasn’t good at self-care during the recovery after the Pulse shooting. As one of the coordinators of the grassroots recovery effort in Orlando, Super spent the majority of his time at different counseling centers helping survivors and supervising counselors, and at the end of the day, he often had nothing left in him to tend to his own self-care.

Months later, as he was researching and presenting on his personal experience with this large-scale traumatic event, he realized how it had affected him. “Those thoughts [of ‘it could have been me’] start coming to you, that guilt of ‘this young person … just lost their life and I didn’t.’ I think that is probably a quiet voice that sat in the back of my mind through the entire process.”

Super also witnessed counselors who experienced guilt over not feeling prepared enough or not knowing enough about trauma and the LGBTQ+ community. Other counselors felt guilty that they didn’t help with the recovery efforts because life got in the way or because they simply weren’t ready and needed to take care of themselves first, he adds.

Super would pay close attention to how counselors were responding — for example, if they didn’t want to meet with clients or walked off by themselves — and check in with them. He and the other two organizers weren’t able to be in contact with all of the mental health providers offering assistance, so they also trained counselors to be aware of colleagues’ behavior and check in with them as needed.

People don’t often think about the need for counseling supervision during a collective trauma, Super points out. “But if you have counselors out there, you really need to have supervisors who are debriefing or helping process emotions for those who are providing services in the moment,” he says. He advises counselors and supervisors to make time for self-care. Talking about their feelings with another counselor, a supervisor or someone they trust will help counseling professionals recharge, and it will minimize the residual effects down the road, he notes.

Compassion also helps clients reframe their own guilt. Armstrong stresses the importance of providing psychological first aid — which includes making the person feel supported and safe — immediately after a traumatic experience. Armstrong has had sessions in which a client cried the entire time, and she felt guilty for not doing enough — only to discover that the client thought the session was extremely helpful. Outside of the counseling space, clients typically have to hold it together, she points out, so they often appreciate having a space where they can break down and not worry about others.

Armstrong also worked with a client who dealt with survivor guilt after the 2012 mass shooting in a movie theater in Aurora, Colorado. The client had been watching a movie next door and, on her way out, almost tripped over a woman who had been shot. She didn’t know how to help the woman, so she simply held her hand and called the woman’s mother. Discussing this with Armstrong, the client said, “All I could think to do for the gunshot victim in the parking lot was to sit there and hold her hand. I am in the health care field, and I felt completely incompetent.”

Armstrong reassured the client that she had done something valuable by offering the shooting victim compassion and psychological first aid, but the client still felt guilty for not doing more. While the client described the event again, Armstrong held her hand, which created an experience to demonstrate the power of compassion. When the client finished her story this time, she noted how the simple act of Armstrong holding her hand had helped her get through the story and made it seem less scary.

A few months later, the client ran into the woman she had helped after the shooting. The woman told her that the kindness of a stranger holding her hand was what replayed in her mind — not the horror of the event.

Armstrong acknowledges that counselors frequently worry about not doing enough, not knowing what to say to clients and not being able to rid them of all their pain. “At the end of the day,” she says, “it’s just us being able to sit with [clients] through all of the confusion and the heartache that heals them.”

For many survivors, the weight of survivor guilt is heavy. But counselors can operate as levees to prevent the weight of this guilt from crushing those who survive.

 

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Read more in an online companion piece to this article, “Doing the groundwork after a large-scale traumatic event

 

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Lindsey Phillips is a contributing writer to Counseling Today and a UX content strategist living in Northern Virginia. Contact her at hello@lindseynphillips.com or through her website at lindseynphillips.com.

 

Letters to the editor: ct@counseling.org

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Grieving everyday losses

By Laurie Meyers April 24, 2019

As a society, we think we know what loss is: the death of a parent, partner or child; the destruction of a home through disaster; the shattering of finances through bankruptcy. These are tangible, recognized — sanctioned, if you will — losses. But counselors know that in reality, life brings myriad losses, many of which go unrecognized, unacknowledged and, most importantly, unmourned. The damage caused by these accumulated losses — sometimes referred to in the popular lexicon as “emotional baggage” — often brings clients to counselors’ doors wondering why they’re in so much pain.

In 1989, American Counseling Association member Kenneth Doka, who has written numerous books on grief and loss, established the phrase disenfranchised grief, which he defines as grief that is experienced by those who incur a loss that cannot be openly acknowledged, publicly mourned or socially supported. Disenfranchised grief may result from the loss of a relationship, the loss of identity or ability, pet loss, or even the loss of “giving up” an addiction.

“This unrecognized loss can be happening all around us but, because of the lack of acknowledgment and support, we wouldn’t know about it,” says ACA member Barbara Sheehan-Zeidler, a licensed professional counselor in Littleton, Colorado, whose practice specializes in grief and loss.

She gives the hypothetical example of a woman who is about to move to a thriving new town to start a higher paying job with great benefits. The woman has spent the past 20 years raising her family and creating a great life for her children, but now she is ready to move on. She is excited about entering this new phase in her life and meeting new people. At the same time, the woman is experiencing a lingering and persistent sense of sadness that she can’t explain.

What the woman is experiencing, Sheehan-Zeidler explains, is disenfranchised grief, which can affect clients in numerous ways:

  • Physically: Headaches, loss of appetite, insomnia, pain and other physical symptoms
  • Emotionally: Feelings of sadness, depression, anxiety or guilt
  • Cognitively: Obsessive thinking, inability to concentrate, distressing dreams
  • Behaviorally: Crying, avoiding others, withdrawing socially
  • Spiritually: Searching for meaning or pursuing changes in spiritual practice

In the example, the woman was not recognizing the losses of community, familiarity, social status and spiritual support from her local church that would come with moving, Sheehan-Zeidler explains. Once the woman actually identified and named those things as losses, the counselor was able to validate and explain her symptoms of insomnia, guilt, absent-mindedness, crying, indecisiveness, pervasive sadness and avoidance of social situations. This allowed the woman to grieve her losses and settle into her new life, Sheehan-Zeidler says.

“When we do not process unrecognized or disenfranchised losses, we run the risk of creating a narrative that is tainted with unprocessed feelings and unresolved grief,” she says. “Their Weltanschauung, a German word for worldview, is corrupted with an emotional burden that influences their beliefs and ability to connect. Consequently, they may be limited in projecting self-confidence needed to secure a new job or challenged to join a new social circle due to feelings of depression or unworthiness.” Unrecognized grief from the loss of a job, health or lifestyle can also cause secondary losses, such as damage to one’s self-esteem, a sense of shattered dreams, and lost community, she adds.

Sheehan-Zeidler helps clients process their grief through a variety of rituals. “I invite clients to create a special time, maybe 5 to 15 minutes daily, for the purpose of ‘being with’ their emotions and thoughts,” she says. “During this dedicated time, I suggest clients find a comfortable and private place to sit, journal their feelings and thoughts, light a candle, have soothing music, enjoy a cup of tea, and maybe have a special shawl or blanket to be used during these ‘time-to-mourn’ moments. Or maybe the client is more active, in which case I’d invite them to mindfully walk in a calming place where they can be with their thoughts and feelings as they reflect on their loss.

“The purpose of this time-to-mourn ritual is to create comfort around you and encourage the feelings to come forward in a planned way so we lead the dance with grief and mourning, and not the other way around. Additionally, as grief can come in unexpected waves, if we have a ritual in place, then we can put the ‘surprise’ grief aside, noting that we will visit with it the next time we are sitting or walking in our special place dedicated to honoring and processing the grief and mourning.”

Sheehan-Zeidler also recommends that clients drink plenty of water and get adequate sleep — taking naps if needed — as their minds and bodies process the loss. Finally, she reminds clients that their grieving process will include bad days, but also good ones.

Losing my addiction

“Put simply, disenfranchised grief is grief that is not acknowledged or valued by society,” says Julie Bates-Maves, an ACA member and a former addictions counselor. “Losses that are not seen as legitimate or worthy of our sadness or grief fit here.”

Addiction may be the king (or queen) of losses that are not typically viewed as legitimate or worthy. “Some people … don’t think that losing something ‘bad’ should hurt, but it does,” Bates-Maves says. “If we think about the functions of an addiction — that is, what they can provide for people — you start to see how hard they would be to give up.”

Bates-Maves notes all the ways in which addictions can fulfill people’s needs, albeit in unhealthy ways. “Addictive patterns often bring pain, but it’s a pain that’s familiar,” she notes. “They bring routine, even if it’s an unhealthy one. [It’s] the illusion of power and control over one’s body and mind: ‘I want to feel or think differently, and I know how to accomplish that.’”

Addiction can also provide companionship or escape from a sense of loneliness, whether through friends who also use, through distraction, through numbing (both physically and emotionally), or through the sense of energy and excitement that using substances can provide, Bates-Maves explains. “Losing any of that would be, at best, uncomfortable [and], at worst, unbearable,” she asserts.

“In my own clinical work and in speaking to other counseling professionals and clients, I have noted little discomfort or objection to exploring the negatives of an addiction with clients,” Bates-Maves says. “Notably, I have encountered hesitation or overt avoidance of the ‘positives’ of addiction, [such as] ‘don’t speak of the glory days’ or ‘don’t encourage clients to focus on what they miss; instead focus on what they have to look forward to in recovery.’ Consider this though — what if the ‘glory days’ are the only time the client felt powerful, or safe, or noticed, or admired, or skillful?”

When entering recovery, clients not only contend with the addition of a new set of behaviors, thoughts and feelings, but also an absence of “glory,” Bates-Maves continues. She believes that talking about the “positives” of addiction can help clients in recovery tackle challenges such as reestablishing a sense of their own identity, learning how to connect with others, and filling in any social skill deficits.

“Inviting reflection on the ‘glory’ of it all is a chance to observe a client reminisce about a time when they felt more worthy,” she explains. “If self-worth is centered on the addiction or a component of it, we need to know so we can help them redefine and reconstruct who they are, not just what they do. Losing an addiction is not simply losing a substance or behavior. It’s losing a way of surviving that our body and mind have become settled in. It can be a tremendous loss.”

As Bates-Maves points out, losses can occur anywhere along the addiction and recovery spectrum: prior to addiction; during addiction; during detoxification, treatment, initial, mid- or advanced recovery; prior to a lapse or relapse; and after a lapse or relapse. Some losses, such as a negative alteration in personal appearance or losing custody of children, may be the direct result of the person’s addiction. Other losses, such as the death of a parent, may happen separately from the person’s addiction but will still affect a client’s addiction or recovery, Bates-Maves emphasizes.

Other experiences common to people working to move from addiction to recovery include:

  • Loss of comfort: The person can no longer rely on his or her addictive pattern as a coping mechanism.
  • Loss of power: Choices are often restricted in recovery, and it’s not always OK to make a “bad” choice.
  • Loss of identity: The person may wrestle with the question, “If I’m not an addict, who am I?”
  • Loss of pain relief: The person may ask, “How am I supposed to manage my pain now? I don’t know any other ways that work as well as _________ does.”
  • Loss of perceived choice: Because substance use is no longer an option, the person has to find another way to live, cope and function.

“It can feel like the rug has been pulled out from under them, and some can flounder in the absence of the structure of an addiction,” Bates-Maves says.

“Also consider the more commonly talked about losses, like loss of lifestyle or [loss of] ‘using’ friends,” she adds. “While it may be healthy to move away from people who remain stuck in unhealthy patterns, it’s certainly not easy. As a counselor, I believe that people have a ton of worth, even in the presence of an addiction or negative behaviors. If I’m told to walk away from the positives of a relationship because there are also negative behaviors, I’d struggle. Clients deserve to struggle with that too. Health and happiness are not always the same thing. If I have the choice to be alone and healthy or to be in the company of others and unhealthy, I’d waiver — particularly if others forced me in one direction or another.

“I think it’s important that counselors really sit with what’s being asked of someone when they’re told they must now avoid people who are still using. Allow for the struggle and encourage clients to grieve the loss of good people who are still stuck. Don’t lose sight of the loss and grief there. Value what’s being lost or taken away instead of encouraging — or sometimes mandating — the death of a relationship. And talk about it. Balance is key. Talk about why some losses are needed, and validate that they’re painful. Allow the pain, allow the struggle, and help clients to cope with them as they move toward something different.”

Losses that are controllable — meaning that clients have some say over their occurrence — can actually foster hope in clients that there will be a chance for repair or course correction once they have adopted a new way of living, Bates-Maves says. Examples of losses that might be controllable include legal problems or convictions, family ruptures, loss of employment and financial problems.

However, even with new skills and hope, there is no guarantee that clients in recovery will be able to fix or recoup all that they have lost, she cautions. For that reason, counselors need to help these clients “sit with that and explore both options: How can I learn to be OK and heal if this is changed or fixed? And how can I learn to be OK and heal if this stays broken or less than I hope?”

“The key lesson there is that clients can reconstruct a meaningful life in recovery, even if some components never return to what they once were,” Bates-Maves says. “It’s about moving ahead and grieving what doesn’t move with you. Again, balance. Growth is often painful, and we want to value the pain and loss that come with growth. Knowing that some relationships have been damaged beyond repair might be very painful and a point of personal despair, but it can also be framed as a powerful motivator. We can mourn the past and work to repair the damage that’s done, and we can work to not repeat it. I think our main task as counselors is to help frame the pain as useful and informative. What people hurt about reveals what they value. It also reveals what they don’t want to repeat. Both elements are quite useful to a counselor in helping a client figure out where they want to go and how to start getting there.”

“I think the most important thing for counselors to remember is that change is really hard,” she emphasizes. “That may seem obvious, but consider how often we forget it. Sometimes clients are kicked out of treatment because they’ve lapsed or relapsed. Other times there are mandates about [whom] one can spend time with and [whom] one cannot, requirements for employment, etc.”

Continuing not to engage in addictive behavior, forging relationships with people who don’t use substances, and gaining and maintaining employment are all healthy goals. However, clients need to process many of their losses — particularly those connected to self-worth and self-efficacy — before it is possible for them to achieve those goals, Bates-Maves says.

“Give people credit for the pain that comes with change, and give them space to talk about it,” she urges. “Talk about how health and happiness aren’t the same thing [but] that the work of counseling is to make them closer. Talk about how in order to move forward, we often have to let go and how hard that is, even when we’re letting go of ‘bad’ things. Focus on where someone is and not only where we/they/you want them to be. If we want to help people move forward, we have to understand what’s keeping them where they are currently. But mostly, give people credit for the pain that comes with change, talk about it, and help them grieve.”

A question of identity

As a certified rehabilitation counselor and someone who sustained a spinal cord injury more than 30 years ago, ACA member Susan Stuntzner knows a lot about the losses and grief that come with disability. 

“At the time, I was paralyzed from the waist down, but within two months, I achieved some mobility and enough to walk with below-the-knee ankle-foot-orthotics [AFOs],” she recounts. “While learning to walk was a fantastic high point of the rehabilitation process, an equally important aspect was figuring out my new or different capabilities. More specifically, I learned I could not run, which is something I used to enjoy; lift more than 25-30 pounds; and that I had to push or pull things rather than lift as a means to move objects. I learned it was probably not a good idea to stand indefinitely and the importance of recognizing and honoring what my
body could do rather than expect me to do things in exactly the same way as I could before.”

Stuntzner also grappled with an issue that is particularly common among women with disabilities whose physical appearance is altered, either through injury or a disability present at birth: body image and attractiveness.

“Again, going back to my own experience, while muscles in my thighs worked, those below my knees did not. This meant my feet and ankles did not either,” she says. “Thus, there was a change in how I initially saw myself and my calves, as these did not have muscle return but they were an attached part of my body. Changing the way I viewed myself was difficult and a form of loss, as I was 19 years of age and highly conscious of fashion and, in particular, shoes. In short, I loved cool shoes and I still do. However, the partial paralysis below my knees meant I now had to wear AFOs and could no longer wear the stylish shoes I had so loved. While some of this may sound trivial, fashion and shoes — again, I was 19 years of age — was important to me, and this change represented a form of loss, along with the attention that my AFOs brought to the stranger passing by.”

“My own story is only one of many, as each person who lives with a disability — visible or invisible — has a story or set of experiences,” Stuntzner says. “For some, it may be cognitive changes [such as] memory, learning, recall, traumatic brain injury. For others, it may be health conditions [such as] irritable bowel syndrome, heart conditions [or] chronic obstructive pulmonary disease that disrupt daily activities and events. Other people live with sensory disabilities — loss of vision or hard of hearing. People who are hard of hearing but not deaf face challenges because people sometimes report not feeling as if they fit anywhere; they are not deaf, nor are they a part of the ‘hearing’ sector due to some of the limitations they experience.”

Regardless of a person’s specific set of circumstances, it is important that the person views themselves as a “whole” person, recognizes their assets and strengths, and builds upon those assets and strengths, Stuntzner says. Identifying one’s abilities, strengths and talents regardless of disability and functional limitations is a key part of what rehabilitation counselors help people do, she adds.

Counselors can help these clients grieve by listening and supporting them emotionally and psychologically as they work through the changes brought about by their disability, Stuntzner says. Counselors should understand that adjustment and grief are individualized processes and that two people with very similar conditions and functional changes may cope and adapt very differently, she notes. They also may require different therapeutic approaches to help them move forward. One size does not fit all based on disability type, Stuntzner emphasizes. It is important to view the person as a whole individual and to help people learn to see themselves as capable individuals comprising many different aspects and interests.

“Another key component of working through loss is helping people work through their negative thoughts and feelings, and experience successes, while living with a disability so they develop a strong internal locus of control and a sense that they can effect change in their life and create the life they seek,” Stuntzner says. “In short, it is about empowering people to discover who they are or who they can be in spite of the disability. As people become empowered, they learn to find their voice and own it and use it to help themselves and others. It is through this process that people oftentimes heal and learn to see the bright side of living with a disability.

“By bright side, I mean they learn to see the positive ways their life has changed or can change, and many find a higher purpose through the experience of living with a disability. However, this is a process, one that may begin with grief and loss, then morph into a personal and/or spiritual journey where people discover ways to grow and sometimes access their higher purpose or sense of self. It is on this journey that people find healing.”

Not just a pet

According to the American Veterinary Medical Association, at the end of 2016 (the latest year for which statistics were available), nearly 57 percent of American households had pets. Surveys have shown that the majority of people among that 57 percent also view their pets as part of the family. Yet many people do not regard the death of a pet as a “legitimate” loss. Indeed, those who have suffered the loss of a pet may not recognize their own grief, says licensed clinical professional counselor Cheryl Fisher, an ACA member whose counseling specialties include grief and loss.

In Fisher’s experience, it is not unusual for new clients to present with issues such as depression, anxiety or stress, and when talking about why they are seeking therapy, mention — almost as if it were a side note — “By the way, I just lost my cat.”

Fisher recalls a client who had come to her for grief counseling after the death of a relative. As Fisher listened, she realized that the client’s loss extended beyond that one death and that she was experiencing complicated grief.

The woman mentioned in passing that she rescued feral cats, two of which had died recently. These street felines were not easily domesticated, so the woman’s interactions with them had mainly been restricted to feeding them, Fisher notes. Yet the woman kept collecting them.

The client was very isolated. In fact, the recently deceased relative had been her only remaining family member. Except for the cats. As limited as her relationship was with them, the feral cats were her family, and she was grieving those losses as well.

“People are sheepish about sharing their grief, but our animals are the most vulnerable members of our families and also the most unconditional and accepting,” says Fisher, who shared the experience of losing her beloved dog Lily in her CT Online column, The Counseling Connoisseur (“Pet loss: Lessons in grief,” April 2017).

As she tells clients who are grieving (sheepishly or not), the relationships that people have with their pets — whether dogs, cats, fish or fowl — are strong not just emotionally but biochemically. In interacting with their pets, people feel a release of oxytocin, the hormone responsible for feelings of closeness and attachment.

Fisher also asks these clients to tell their “pet story.” She begins by asking how they met their pets. Fisher says the adoption or birthing story is very significant to the pet–human bond, and when clients start to recount it, they get very passionate as they open up to those memories.

“I always want to know the pet’s name, what kind [of animal it was], what the client liked to do with them and if they have pictures,” Fisher says. “It’s like traditional grief therapy — I’m helping them talk about their loved one.”

As clients talk, Fisher will say things that highlight the significance of their relationship with their pet. For example, she might say, “It sounds like Sadie stood right by you through the divorce.”

Fisher says she can almost see clients exhale: “You get it. I didn’t realize this was so important. She wasn’t just a cat!’”

Fisher also helps clients find ways to stay connected to their pet by giving examples of rituals that others have used. She urges clients to think about their relationship with their pet and the type of remembrance that would fit that bond.

For Fisher and her husband, it was taking Lily’s ashes to the beach where they and their goldendoodle had so often visited and played. “She loved the beach,” Fisher notes.

Some clients create scrapbooks with items such as their pet’s adoption papers and first pictures. Fisher included all the condolence cards she and her husband received in the wake of Lily’s death.

One of Fisher’s clients honored her cat, who loved to look out the window at birds, by constructing a special birdhouse that held pride of place next to the pet’s perch.

Fisher also mentions a video she saw at a conference on children and grief. It was called “Bridget’s Loss,” and in it, a little girl says goodbye to her fish in a “ritual flush.”

Fisher describes the scene: The mother, who filmed the video, asks her daughter if there is anything she wants to say before flushing the fish. The girl says, “Sammy, you were a good fish. You always did good fish things, and now you will be able to go with all the other fish, and I will see you in another time in heaven or wherever.”

The key to grieving pet loss is to have some kind of goodbye ritual, Fisher says, even if it is something completely private that involves only clients and their pet.

 

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Additional resources

To learn more about the topics discussed in this article, take advantage of the following select resources offered by the American Counseling Association:

Counseling Today (ct.counseling.org)

Books (counseling.org/publications/bookstore)

Webinars (aca.digitellinc.com/aca/pages/events)

  • “An Overview of Military Service Members and Their Families: How Mental Health Professionals Can Best Serve This Population” with John P. Duggan and Odis McKinzie (WEB17002)

Podcasts (aca.digitellinc.com/aca/store/5#cat14)

  • “When Grief Becomes Complicated” with Antoinetta Corvasce (ACA252)
  • “Love and Sex and Relationships” with Erica Goodstone (ACA231)
  • “Disability Awareness” with Robbin Miller (ACA196)
  • “Counseling Military Families” (ACA139)

ACA Mental Health Resources (counseling.org/knowledge-center/mental-health-resources/)

 

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Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

The caregiving conundrum

By Tia Amdurer March 12, 2019

The branch of therapy that deals with anticipated loss due to death is a specialization that often gets overlooked. As a counselor who works with anticipatory grief and has five years’ experience in a hospice bereavement office, I have found that primary caregivers usually need guidance and support but don’t ask for it until they are completely overwhelmed. Counseling for end-of-life caregiving is very much an area in which good therapists can make the difference. 

Current Medicare standards for hospice do not cover the cost of a bereavement specialist for family members of a dying patient. Unless the family or caregiver seeks an outside therapist, chaplains and social workers affiliated with assisted living facilities or hospices become the de facto mental health experts, juggling family dynamics, anticipatory grief, medical regulations, spiritual concerns and the patient’s care plan.

Caregivers: The unsung heroes

Whether end-of-life care is being given in a home or a facility, caregivers can grow overwhelmed by the physical and emotional toll of their responsibilities. They may start showing signs of anticipatory grief, including mourning the loss of their role and relationship and fearing the future. This can be coupled with anger at the isolation and abandonment by others, bitterness at the exhaustion, frustration at the never-ending demands, shame for wishing caregiving were over already (which would mean the patient’s demise), helplessness at being unsure about what they should be doing and sadness at the way that time is running out.

In my book Take My Hand: The Caregiver’s Journey, Chris Renaud-Cogswell offered written reflections on her emotional overload with caregiving responsibilities: “I’m so jealous of all of you who enjoy your parents’ company and treasure the time you have with them. When do I get past the ‘I can’t believe this is my life,’ regretful, resentful stage? I have never used the F-word as much as I do since my mother moved in.”

Guilt seems to be the emotion that rises to the surface most often for caregivers. Even in the most “functional” homes, the intensity of caregiving can be enormous. For example, a spouse may not be capable of doing everything but still feels responsible for the care of his or her sick partner. Conversely, partners in good health may feel weighed down by the extreme change in their role and lifestyle. Adult children who are working or raising kids themselves can feel put upon to do more and angry that their time is so limited. Those caring for an elder may find old childhood resentments bubbling up. Relatives who might like to visit don’t know how to help. Asking for help triggers additional feelings of guilt and frustration among caregivers.

As grief counselors, we listen to recitations based on a lifetime of behaviors and try to help put boundaries in place. We validate and remind clients that they are doing the best they can under trying circumstances. Caregivers may struggle with the history of a poor relationship with the patient. These interpersonal dynamics are likely to continue being problematic. For many families, a storybook resolution or a full sense of forgiveness might be difficult to achieve.

One middle-aged man paid a daily visit to his dying father, who had a long history of being abusive and battling alcoholism. Despite the visits lasting for four or five hours, the man refused to interact with his father. Instead, he sat in a chair, played games on his phone and felt guilty. A daughter who had been constantly rejected by her narcissistic mother reacted by directing her frustration at staff for any minor infractions, fearing that her mother, who was dying, would deride her for her own lack of attention. In another case, an adult daughter wanted to scream at her mom for never asking for what she needed, acting out passive-aggressive patterns and playing the “martyr.” The daughter hated the nagging person she was becoming.

Caregiving can be a long journey, so, as counselors, we must explain the necessity of self-care for the caregiver. Even among caregivers who are fully engaged with their sick loved ones and content with their position, emotional exhaustion takes a toll. Whether dealing with a loved one’s personality changes or the loss of that person’s physical abilities or mental acuity, being on call as the “responsible adult” is draining. Caregiving can run the gamut of emotions and experiences, from boring to terrifying.

Self-care for caregivers includes asking for help, making schedules, sleeping, taking time alone, exercising, seeing friends, checking out support groups, praying, laughing, journaling, connecting through social media and, of course, learning to accept help. By presenting family members, friends, faith organizations or neighbors with specific ways to help, the caregiver is actually providing a service. Rather than viewing these “asks” as a burden to others, it can be reframed as an opportunity for others to do a good deed for the person who is dying.

A caregiver’s functions will depend on many variables. For instance, if the person who is dying is in a facility, the caregiver may be tasked with doing laundry, attending functions at the facility, visiting the sick loved one daily or weekly, finding coverage for meetings with facility staff to discuss behavior changes or concerns, driving the loved one to outside medical appointments, scheduling visits from friends and relatives, and maintaining a family home.

For at-home caregivers, responsibilities might include adjusting for safety precautions around the home. This might involve installing grab bars, removing throw rugs and acquiring nonslip mats, having a working fire extinguisher, checking that the water heater thermostat is set below 120 degrees Fahrenheit and preparing for durable medical equipment (such as commodes, hospital beds and oxygen tanks/cylinders). In addition, these caregivers typically shoulder the responsibility for being available to drive the person to appointments as necessary, finding coverage when away from the home and providing meals that are dietarily different.

Counselors should remind clients who have caregiver responsibilities that friends or relatives might be able to visit or engage in crafts or music with a sick loved one, thus allowing the caregiver some time off. To ward off burnout, caregivers need respite.

Thus we arrive at the conundrum of respite: “If I go away for a few days, what if my loved one dies? How will I live with the guilt?”

There are two scenarios at the end of life: One, the loved one dies when someone is with them and, two, he or she dies when no one is there. Caregivers often worry that their loved one might be alone when they die. Some hospices can provide 11th-hour care, during which volunteers can sit at bedside if the family wishes.

My experience in hospice has been that some patients follow a definitive trajectory in their decline, whereas others follow an indeterminate timeline, making a family’s desire to be bedside at the last breath fraught with uncertainty. Although many cultures encourage “vigiling” at the deathbed, there is an unknown: Does the patient want the family there? Some individuals need to be alone when they die and will release from this life only when the family or a specific person leaves. The speculation about why this happens is endless, but it may help alleviate family guilt to use the metaphor of a group coming to a bridge together, but because only the dying individual may cross that bridge, he or she will do it alone. 

Family dynamics

As counselors, we should encourage caregivers to see that a document such as Five Wishes (fivewishes.org) is completed while the elder is mentally competent. This document serves as a directive about how the patient wishes to be cared for at the end of life. It is a binding document like a living will. In considering end-of-life protocols, all adults should be encouraged to write down their wishes so that these are known in advance.

During a crisis or major upset in a family system, different personality traits come to the fore. Family members who aren’t the primary caregiver might assume many roles at the end of life: the Swooper, the Know-It-All, the Call-Me-If-You-Need-Me sibling, the I-Don’t-Know-Anything-About-Dying-Elders family member … All the family roles are intensified. Folks who have a personal need to make amends come crashing in. The Golden Child comes back for a weekend and questions everything that’s been done.

Renaud-Cogswell shared her experience in Take My Hand: “Mom was diagnosed with lymphoma a week and a half ago. The hospice team began coming to care for her at our house shortly thereafter. Brother wants to take mom to lunch. Incredulous, I tell him she is sick, she has lymphoma, and that he could bring lunch here. He brings lunch. He doesn’t, however, bring lunch for me. Not something I should be overly surprised by, but I am hurt nonetheless. Then brother asks Mom if she would like to move into his empty townhouse. (Alone.) Then he and his girlfriend begin telling her all the positives about moving in there. I say, ‘She’s sick. She needs 24-hour care.’ Brother says, ‘Since I kicked my renters out, I need the money.’

“Loudly enough for them to hear, but soft enough so that Mom doesn’t, I hiss, ‘She’s dying!’ Then what do you suppose this brother asks our mother? ‘Can I borrow $500?’ (Who asks their dying mother for money???) And do you know what? She gives it to him! This was yesterday. I ran from the minute my feet hit the floor in the morning till my head hit the pillow at midnight last night. I need to sit down and have a good cry, but today, I’m afraid, will be just as busy.”

There are additional complications that must be addressed when “helpers” come. For caregivers, it is a frustrating and delicate struggle between wanting support and allowing helpers to make mistakes while visiting. The strain of feeling that no one else can do the caregiving correctly is immense. Caregivers should establish safety rules that are nonnegotiable — for example, the parent cannot go out without oxygen, medications must be administered on time, hospice will be called if the elder falls.

Grief counselor David Maes created a template (see below) that can be used when conflict arises between family members. The template helps ensure that during a family meeting, the identified patient remains the center of attention. Family members respond to prompts written in the appropriate boxes. Other concerns are written outside the square in list format.

Start by asking the existential questions (the upper left-hand box): What is meaningful for the patient? Before the illness, what was the person’s worldview? How did he or she move through life? What was the essence of who they were? Next, move to the upper right-hand box, which deals with patient preferences. Ask what the person likes related to music, food, art, reading, nature, hobbies, etc.

The lower left-hand box deals with the illness: How is the diagnosis and prognosis affecting the loved one’s personality, behavior, likes and worldview? What gets in the way of who they are? Finally, list the resources: How is the family going to work together? What’s the plan of care? Who is responsible for what?

Counselors might need to remind family members that past relationship dynamics should have little bearing on the here-and-now focus of the discussion. The question to ask is, “Whose death is this anyway?”

Another protocol, from Susan Silk and Barry Goldman, is called Ring Theory (see tinyurl.com/RingTheory). In this exercise, the center circle is the patient, the subsequent circle is the primary caregiver and concentric circles can identify others who are less involved with daily care. The idea is that only comfort can go inward while the difficult emotions go outward. Family members and friends can offer unconditional love to each inner circle while finding their own support and a place to vent in extending circles. Each family member may find their own rings of support.

If end-of-life care is an area you are considering as a professional counselor, begin by learning about grief and bereavement. Alan Wolfelt’s comprehensive books are available through the Center for Loss & Life Transition (centerforloss.com). The Hospice Foundation of America also offers excellent webinars and books (hospicefoundation.org). There may be local support groups for caregivers in your area, and we should also be able to direct clients to resources such as the Alzheimer’s Association (alz.org) and AARP (aarp.org).

Competency in serving caregivers and families at the end of life involves a combination of approaches. We should be able to provide psychoeducation on dying and the needs of the dying. We should be competent listeners, validating and normalizing their experiences while encouraging life review and memory making. We can offer facilitation for family discussions. We can help our clients with boundaries, rituals and support groups. Finally, we can encourage the caregiver to engage in self-care, including therapy.

 

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Tia Amdurer is a licensed professional counselor and national certified counselor with a private practice, Heartfelt Healing Counseling, in Lakewood, Colorado, that specializes in grief, loss, life transitions and trauma. She is the author of Take My Hand: The Caregiver’s Journey, which was published last year (TakeMyHandJourney.com). Contact her at tiaamdurer@gmail.com.

 

Letters to the editor: ct@counseling.org

Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, go to ct.counseling.org/feedback.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Counseling Connoisseur: Children and grief

By Cheryl Fisher November 13, 2018

Nicolas was just under 3 years old when he attended his grandfather’s funeral. He wandered through the sea of adults, holding tight to his mommy and daddy’s hands as he made his way to the front of the line where his grandfather lay peacefully in the casket. His grandmother picked him up as he tried to climb into the casket. “Sleeping?” he asked his grandmother. “No, sweetheart. Your grandfather died.” Nicolas paused looking at the man in the box and back at his grandmother, “Sleeping?” he tried again. “No, he has died. He is not sleeping”, the grandmother replied softly. Nicolas looked around and attempted to contort his face — mimicking the adults around him. “They are sad, honey. When someone dies, we can feel sad,” his grandmother attempted to explain. Nicolas just watched, trying to imitate the adults around him as the man in the box continued to sleep.

 

According to William Worden, psychologist and grief expert, all children grieve regardless of age and stage of development. However, each stage provides a different understanding of death and loss. Grief can be experienced in a variety of ways. A child may experience a physical manifestation such as shock, or somatic ailments. They may feel anxious, angry, depressed or withdrawn. The children may act out behaviorally, resulting in biting or hitting. Additionally, there are critical periods where adverse experiences impact the neurological development of children in more critical ways. Having an understanding of how developmental stages affect the manifestation of grief can help counselors provide more effective support for children who have experienced a loss.

Infants and preschoolers: Infants and preschool age children experience life through their senses. Object permanence doesn’t become established until approximately 28 months. Therefore, children at this age may experience grief as the annihilation of existence: now you see me, now you don’t. Challenges resulting from loss at this age include a desire to connect to others but not knowing how, which may cause either clingy or standoffish behavior. A child may also exhibit a decrease in impulse control and tolerance, an increase in uninhibited behavior and poor emotional regulation, and possibly difficulty with toilet training. This is a critical period, neurologically. Neurons that fire together, wire together. Therefore, losses at this age have a higher chance of impacting children in significant ways.

School-age children: As children continue in their development, they are able to recognize attachment relationships, and they may experience loss as abandonment. School-age children may become preoccupied with death, which may become demonized during this stage, and children may experience anxiety related to the idea of mutilation. For example, children in this age group may talk of “blood and guts” and the Grim Reaper when referring to death. Children during this age are capable of conceptualizing loss as permanent and experience magical thinking. Grief may manifest as hyperactivity, emotional eating and/or somatic complaints. Children may withdraw or become argumentative and demanding. They may have difficulty concentrating and demonstrate a decrease in academic performance. Additionally, they may identify with the deceased by exhibiting similar behavior or experiencing symptoms of a loved one’s terminal illness. For example, Tony, an 8-year-old client came to me experiencing pain in his chest. A full pediatric work-up did not find a physiological etiology to his discomfort. However, in his intake, Tony stated that his grandfather had just died. When I asked his parents about Tony’s grandfather’s death, they indicated that he had died of lung cancer. Tony’s chest pain appeared to be a somatic manifestation connected to his grandfather, and after a few months in play therapy, Tony was able to work through his grief in a way that allowed him to find other ways to remember his grandfather.

Adolescents: Adolescents are capable of abstract thinking and struggle with the concepts of being versus non-being. While teens may feel immortal, they have increased awareness of the permanence of death. They may begin to think about death in terms of their own mortality. Teens may have experienced a variety of losses by now, and are better able to differentiate between types. The death of a distant elderly relative may feel different than the loss of a close friend.

Grief may manifest in a variety of ways including survivor’s guilt, a reduced sense of spontaneity, self-medicating (food, drugs, sex, etc.), social isolation and cyber mourning. Thanatechnology, or the use of media and technology to mourn, may be a way to seek comfort and connection through mourning sites, grief blogs and music playlists. However, it may also be a venue to glamorize loss in an unhealthy manner.

For example, I was working with a 16-year old girl who was devastated by the sudden death of her classmate by drug overdose. In addition to experiencing survivor’s guilt, she began engaging in high-risk behavior such as getting intoxicated at parties and offering sexual favors. This was a complicated situation as the client was not only grieving her classmate but also struggling with her own identity and self-worth. “Why should I live and she die?” We used an online memorial site to create a digital scrapbook of her friend’s favorite music, poems and pictures of special places they had gone together. I watched my client (and, with her permission, the memorial they had created) carefully. I started to get concerned as it remained a dark space for several months with little construction of hopeful meaning in sight. One day while the client was lamenting this loss, I asked, “Where would you have liked to go with your friend?” This led to a discussion about how the client and her friend had talked about hiking the Appalachian Trail when they graduated from high school. I grinned and said, “What a lovely tribute to your friendship to keep that promise.” By the next session, she had begun adding pictures and maps of the Appalachian Trail, marking the route she planned to take in a post-graduation trip to honor her friend.

 

Grief Work

It’s important to acknowledge that the deaths of family members or friends are not the only losses which can cause grief in children. For example, the death of a beloved pet, the divorce or separation of parents or a move to another school are all events that can evoke a significant sense of loss. It is vital to honor and understand these losses and ensure that children are allowed to express the accompanying grief.

Recognizing the varied symptoms of grief in children is essential as it may be masked in a variety of behaviors resulting in misdiagnosis and treatment. Even the most well-intentioned clinician or educator may misread and pathologize a child’s lack of concentration, fidgeting and restless behavior. This was the case for 5-year-old Andrew whose grandmother died suddenly from a heart attack. Andrew was very close to his grandmother, and even though his parents provided him with age-appropriate information around her death, Andrew began eliciting restless and inattentive behavior at school. Even though [his teacher was] aware of the death, notes were still sent home daily indicating that Andrew was disruptive in class. On the last day of the week, and the day before Andrew’s grandmother’s memorial service, the teacher’s note read, “Andrew is exhibiting signs of ADHD.” Andrew had not previously experienced difficulty in class. This is an example of a misdiagnosis. Andrew did not need medication or treatment for attention deficit hyperactive disorder (ADHD), but support during his grieving process.

After all, the goal of grief work, according to Worden, is to emotionally relocate the deceased loved one in a way that allows the child to move forward. In this way, children discover ways to remember the loved one in a healthy way. This involves helping children create connection to self, to others and to the sacred.

 

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Cheryl Fisher

Cheryl Fisher is a licensed clinical professional counselor in private practice in Annapolis, Maryland. She is director and assistant professor for Alliant International University California School of Professional Psychology’s online MA in Clinical Counseling.  Her research interests include examining sexuality and spirituality in young women with advanced breast cancer; nature-informed therapy; and geek therapy. She may be contacted at cyfisherphd@gmail.com.

 

 

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Counseling Connoisseur: Thanatechnology – Grief and loss in a digital world

By Cheryl Fisher June 8, 2018

Thanatechnology: Any kind of technology that can be used to deal with death, dying, grief, loss and illness.

 

Kelly (an alias), an eighth-grader, sits with her friends in the school auditorium as her principal calls out the names of each of her classmates who were killed in the recent shooting. To honor the lives of these young people, the school is hosting a remembrance ceremony. As tears run down her face, Kelly huddles close to her schoolmates and clicks away on her phone posting messages on several social network sites and a memorial site that she and her friends created. A text message pops up from a boy she met on one of the sites. He is a survivor of a school shooting that happened a couple of years ago — he understands.

Tony’s (alias) phone vibrates, rousing him from his slumber. He looks at the clock – it’s 2 a.m. He has to be up for school in just a few hours. He squints, trying to read the alert on his phone. Another teenager has died from drug overdose. He heaves a mournful sigh and turns on the bedside lamp. His phone begins to blow up with social media posts. The deceased didn’t attend his school but is related to his girlfriend’s best friend. Tony attempts to return to sleep, but he keeps thinking about the teenager [and] wondering why it happened.

Without a doubt, the youth of today are often exposed to significant and traumatic losses. Traditionally, we have marked death with rituals such as funerals and memorials and grieved with the support of counseling, faith communities and neighbors. In more recent years, technology has provided additional ways to remember and mourn, such as creating online memorials, seeking distant or virtual grief counseling and connecting with family, friends and even strangers without geographical limitations. It erases time and distance and allows for virtual experiences and expressions that promote a narrative that lives forever.

Digital Presence and Youth

In Dying, Death, and Grief in an Online Universe, researchers Kathleen R. Gilbert and Michael Massimi observe that digital technology can “bring people together for social support, provide information, and offer a venue for conducting grief work such as telling stories or building digital memorials.”

In another section of the book, researcher Carla Sofka writes that young people are even more likely to seek grief support online. Sofka explains that the internet, social media and other digital platforms are where younger generations are most comfortable because they provide opportunities for social interaction; a sense of independence and privacy; the ability to express and form their own identity; a sense of community that includes those that are marginalized; and instant alerts and communication. All of these elements allow youth to seek and find like-minded communities that can provide immediate support and strategies for coping with myriad life issues — including death and dying, and grief and loss.

 

Social Interaction

Online bereavement forums and chat rooms provide a sense of social connection with users. Sites such as Caring Bridge allow multiple users to maintain a virtual journal offering information and capturing narratives that are accessible to members. Tumblr, Facebook and Instagram create spaces where youth can just “hang out.” Video calling technology such as FaceTime and Skype bridge the distance between users and promote interaction and communication. Additionally, grief counseling may be offered via video, phone, chat or email formats.

Independence and Sense of Privacy

Teens turn to technology to carve out a private space for self-expression. However, research indicates that internet use often provides the illusion of anonymity, which may encourage a false sense of privacy. The struggle for privacy is nothing new: The tension between privacy and personal expression has existed between teens and parents for decades. In It’s Complicated: The Social Lives of Networked Teens, danah boyd*, principal researcher at Microsoft Research notes that social media introduced a new dimension to this age-old power struggle. Instead of worrying about what teens wear outside, parents are concerned about what pictures teens are posting about what they wear outside.

[*boyd prefers to spell her name with lowercase letters.]

“Although teens grapple with managing their identity and navigating youth-centric communities while simultaneously maintaining spaces for intimacy, they do so under the spotlight of a media ecosystem designed to publicize every teen fad, moral panic, and new hyped technology,” writes boyd.

Yet, online spaces allow for exploration of feelings and thoughts, examination of death anxiety, and expression of grief and loss. For example, a 14 year- old client crafted an entire mix of music and prose around the complicated emotions she experienced related to the death of her estranged father who had abused her as a little girl. Using an alias, she posted the eulogy online and watched as strangers connected with her, validating her feelings and experience.

Expression and Influence of Identity Formation

The internet provides creative space for expressing grief and honoring loved ones. Sites such as KIDSAID.com, offer children the opportunity to connect, interact and creatively express their grief. In addition to expressive sites and online memorial services such as Legacy, Remembered.com and Your Tribute provide an unfettered opportunity to honor loss, especially for those who are marginalized or disenfranchised. The use of letters, photos and sound provide rich and detailed memorials that allow users to express their grief, absorb their loss and ultimately move forward.

Sense of Community

Blogs provide a venue to capture experiences and to cultivate topic-based virtual communities. Boyd suggests that these constructed networks serve as a public place to interact with real and imagined communities, thus satisfying a desire to be part of a broader world.

Instant Alerts

Online communication is often in real time. Twitter, Snapchat and a variety of other digital sites offer instant notifications and ongoing engagement. Technology allows users to gather multiple streams of almost instantaneous information from afar. For example, recently I was at a social gathering where a young woman, glued to her phone, was continuously texting. At one point I interjected, “Is everything alright?” She looked up and shook her head. “No, I have a friend who was just in a car accident and the medics are transporting her to shock trauma. Her parents are on their way to the hospital — but no one thinks she’s going to make it.”

The accident occurred in another state, yet this young woman was experiencing the event minute by minute via her phone messaging.

There are numerous attractive features to thanatechnology. Information is persistent and endures. There is a sense of immortality and legacy when a person’s comments, photos and work is posted in cyberspace. It is visible to infinite numbers of individuals. It is spreadable, and with one repost or share, hundreds more are invited into our experience. It is searchable. Just yesterday someone emailed me after reading my article on pet loss and grief. She had been Googling information about pet loss and my article popped up. I was able to provide her with additional support resources.

While there are many helpful aspects of using technology for grief support, there are some serious causes for pause. Are the online interactions healthy? Who is actually participating in the network communities? Are youth oversharing personal information while in a vulnerable state? How pervasive are social divisions and are they perpetuated in the participating forums?

Clinicians, parents and educators must be digitally literate and provide opportunities for genuine face to face connection while acknowledging the cyberworld of teens. Using technology during this very vulnerable time can provide tremendous support and healing, but it may pose risks. Counselors have the responsibility to help youth develop the skills to navigate technology in a way that creates a safe environment for their grief experience and promotes bereavement support.

 

 

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Cheryl Fisher

Cheryl Fisher is a licensed clinical professional counselor in private practice in Annapolis, Maryland. She is director and assistant professor for Alliant International University California School of Professional Psychology’s online MA in Clinical Counseling.  Her research interests include examining sexuality and spirituality in young women with advanced breast cancer; nature-informed therapy: and geek therapy. She may be contacted at cyfisherphd@gmail.com.

 

 

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.