Category: Caregiving

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After Children Are Freed From Captivity

00Caregiving, Cognition, Depression, Embarrassment, Featured news, Law and Crime, Shyness, Trauma July, 19

Source: James Sutton, creative commons

On occasion, we hear of extreme cases of child abuse, making family names like the Turpins infamous.

The 13 Turpin children were held captive in their house, where they were limited to only one meal a day and one shower a year. Twelve of the children were subject to extreme physical abuse, and one suffered from sexual abuse. The eldest child, who was 29 years old, weighed only 82 pounds.

Cases like these often publicize legal proceedings and atrocities committed by the parents, but disregard what happens to these children—the victims— in the aftermath. 

Research on children held captive is sparse, however, there are some studies of other high-profile cases where children suffered extreme deprivation. A well-known one is Genie, a child who was isolated in a small bedroom where she was strapped to a toilet seat during the day, or trapped in a crib with wire covering. She received absolutely no stimulation and was only fed infant food. 

When Genie was found at age 13, she was unable to perform basic functions, such as chewing, biting, standing or walking. She spent years trying to learn to speak, but was unable to acquire language fully or normally. After years of testing by psychologists and physicians, her mother forbade further assessment of Genie, and she is now living in the care of the state of California.

Maude Julien, a psychotherapist from France who herself was subjected to captivity by her parents, now treats patients who are victims of trauma. In an interview with The Trauma and Mental Health Report, Maude describes her experiences growing up.

“For about 15 years, I practically never went out. I never went to school; my mother was my home-school teacher. My father wanted to create a superhuman, uncorrupted by this world,” Maude said. “I had to undergo a ‘training of the mind’ in order to become this ‘superhuman.’ He wanted me to believe that the world outside was terrible.”

Maude described the effects severe trauma caused and explained her recovery process.

“I had to learn the simplest, most basic social conventions like speaking to strangers or finding my way around. Above all, I had to learn how to talk, because my long periods of forced silence had made me almost mute,” Maude said.

“Even though I was learning all this, I was still imprisoned behind the ‘gates’ of conditioning. I could still hear in my head, day and night, the tick-tock of my father timing everything,” she said.

Maude described her recovery as the need to “free herself from the mental and emotional hold” she was under. It took her more than 10 years to overcome the consequences of her imprisonment.

Maude explains how reading, and connecting with animals and other people helped her cope with trauma. She attributes her ability to get out of the house to her music teacher and describes her second husband’s parents as an instrumental part in helping her mature.

“I was 24 when I met them and they helped the child inside me grow up. I felt unconditional parental love for the first time; it’s one of the greatest gifts in the world,” Maude said.

Children who have been held captive by a relative often think they deserve it, and live with a heavy feeling of shame and guilt. 

“It’s usually shame that prevents victims from seeking help,” Maude said. “They have also a feeling of isolation, because a predator like my father, makes the victim believe that he alone can love and protect them.”

Children reported in these high-profile cases may feel guilty for having “betrayed” their parents, yet may also feel relief for having escaped. She describes living with this duality as being very “painful.”

“They will have to free themselves from the ‘psychological leash’ imposed by their predator,” Maude said. “They will have to learn how to trust certain people, and they will have to learn how to recognize other predators and stay away from them. Most of all, they have to learn how to trust themselves.”

—Amanda Piccirilli, Contributing Writer, The Trauma and Mental Health Report

– Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

-Copyright Robert T. Muller

This article was originally published on Psychology Today

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Caring for a Loved One with Alzheimer’s Brings Benefits

00Aging, Burnout, Caregiving, Featured news, Health, Memory June, 19

Source: Edwin & Kelly Tofslie at Flickr, Creative Commons

“I’m always in the present. I have to be one step ahead of David. Things go missing all the time in this house—the remote, mail and even the utensils. I’m down to a handful of forks! It would be simple if I could just lock the door to store some important items, but he doesn’t like that.”

Mary (name changed for anonymity) is the primary caregiver for David, her husband of 50 years who is in the final stages of Alzheimer’s disease. For Mary, ‘being in the present’ refers to her constant worry about even the most mundane elements of life that many take for granted. 

Recent estimates show that over 5 million Americans are living with Alzheimer’s—a number expected to rise to as high as 16 million by 2050. Currently more than 15 million Americans function as primary caregivers and provide essential, albeit unpaid care for people with Alzheimer’s and other dementia-related illnesses, taking on responsibilities such as bathing, grooming, dressing, feeding, and providing additional daily living assistance. At times, caregivers may even have to manage unexpected and unprovoked acts of violence, paranoia, and inappropriate sexual behaviours.  Mary understands this reality all too well. In an interview with the Trauma and Mental Health Report she confirms this additional stress:

“I take David everywhere I go. I’m always scared that he will do something unpredictable, embarrassing and grossly inappropriate.”

This demanding and overwhelming role can take an emotional toll, putting caregivers at risk of becoming socially isolated, exhausted, and suffering from burnout. It is clear that there are drawbacks to being a primary caregiver and Mary has experienced many of them, such as loneliness, guilt, embarrassment, frustration, and even verbal and physical abuse. Mary and many individuals in similar circumstances, continue to do so at the expense of their own wellbeing.

But a growing body of research shows that despite challenges, there are positive aspects associated with providing such care for another person. Studies report that some experience an enhanced sense of meaning in their lives, while others feel a sense of empowerment as they learn how to navigate the health and social systems related to the illness. Caregivers have also been found to frequently reminisce on happy memories, enjoy pleasurable activities, and develop a deeper appreciation for time spent with their loved ones.

When reflecting on their life and their current situation, many of the positive benefits of caregiving resonate with Mary:

“Throughout our marriage, we lived separate lives. At times, I resented David because he would often leave me to go play golf.  I felt a distance between us. Now our situation has forced me to spend time with him and in some ways, I’m getting what I longed for. I’ve become closer to family members who have assisted me with David’s care for which I am so grateful. You truly learn who is there for you.”

In addition to gaining a deeper appreciation for her family, Mary acknowledges that she has also grown substantially as an individual:

“I have become more patient and have learned to effectively de-escalate situations. I am confident I can handle a lot more than I could before.”

Speaking with her, it is evident that Mary has come to appreciate the little things in life:

“Despite our daily struggles, there are precious moments; moments when I see glimpses into his soul. Some days when I pick him up from the nursing home, he is eagerly waiting for me by the window. I’m sure he thinks that I’m solely his caregiver. But, I can see his vulnerability and I know that he needs me.”

Many factors appear to influence caregiver resilience: the intensity and context of the provided care, socio-demographics such as age, gender, education, the availability of social and community resources, and the caregiver’s psychological attributes. Though Mary fully acknowledges the struggles and stresses that come with her role caring for David, she remains resilient. And no matter how difficult her situation may get, she stays focused on the gifts this experience has brought her. 

-Young Cho, Contributing Writer, The Trauma and Mental Health Report

– Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

-Copyright Robert T. Muller

This article was originally published on Psychology Today

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Assisted Dying: We Need a Larger Conversation

00Aging, Caregiving, Decision-Making, Empathy, Featured news, Guilt April, 19

Source: Alberto Biscalchin at flickr, Creative Commons

We know that death is inevitable, yet most imagine it in the distant future. But those with a terminal illness face the harsh reality of death’s imminence. Cancer is the most common terminal illness, and in 2016, an estimated 1.5 million new cases will be diagnosed in the US, and almost 600,000 people will die from the disease.

Over the past decade, European countries such as Belgium and the Netherlands have legalized assisted dying. More recently, Canada passed Bill C-14 in June 2016, allowing assisted dying to be an option for those with a terminal illness. According to Health Canada, since the bill passed, there have been a total of 2,149 assisted deaths, and 63 per cent of them were cancer-related.

I lost my grandparents to terminal diseases, and saw what they endured. I wonder what choice they would have made had assisted dying been legal at the time. Both my parents believe that if someone is suffering, they have a right to end their life. As both of them had to care for their own ailing parents, they shared similar sentiments. In my mother’s words:

 “You feel frustrated, because you’re helpless. There is no cure and there is literally nothing you can do. You get very depressed, angry, and sad yourself. It’s also so hard to watch someone who was once so strong not be able to tie their own shoe anymore.” 

My father recalled a moment with my grandmother, when she could no longer bear her suffering. “I remember being in the kitchen with her and she put her head down on the table and said, ‘I just want it over with.’”

Since my paternal grandparents did not suffer long, my father does not think assisted dying would have been an option for them. My mother, however, feels differently and would have suggested it to her mother if the law would have been in place.

The right to assisted death provides some with relief. Barb Gibson Clifford, from Alberta, has stage 4 uterine cancer and in a short film by Dying With Dignity Canada, explains how this legislation impacts her:

“It’s terrifying to think that, if I don’t have choice, it could be very nasty, both for myself and for my family members. I’m so grateful to those nine judges of the supreme court for choosing to be in consensus about what they were doing. I cheered. I cheered in my kitchen.”

There are others who do not agree with their family members’ choice of assisted death. Former journalist, Deborah Binner from the United Kingdom, watched with inner turmoil and despair as her husband, Simon, made the choice to travel to Switzerland to end his life. This came after he received a motor neuron disease (MND) diagnosis. In her story, she explains how her husband’s choice made her feel:

“I didn’t want Simon to suffer but I didn’t want him to die, either. Watching him plan his own death, while I still wanted more time, was overwhelmingly traumatic. He had rights, but how much of his life was mine? I won’t join any campaign or celebrate his ‘choice’; nor would I condemn any other human being for making the same one.”

In a study of terminally ill patients in the United States, approximately 60 per cent supported assisted dying, but roughly 10 per cent considered it for themselves. Those who were more likely to consider it had depressive symptoms, essential caregiving needs (washing, eating, etc.), and pain. There are still some patients who do not make this choice for themselves. 

Michael Wenham from the United Kingdom, who also has MND, writes on his blog, “Investment in universal best palliative care is the true expression of compassion, not the offer of a cocktail of barbiturates, which is a perversion of therapy.”

With assisted dying laws being introduced in a number of countries, there is still a divide. It is a choice that affects many people and their communities. The conversations around Bill C-14 and other assisted dying laws tend to focus on ethics and morality. Yet, it is important that we recognize the human life behind these legislations. 

– Amanda Piccirilli, Contributing Writer, The Trauma and Mental Health Report.

-Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

-Copyright Robert T. Muller

This article was originally published on Psychology Today

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When Male Rape Victims Are Accountable for Child Support

00Adolescence, Caregiving, Featured news, Law and Crime, Sex, Trauma February, 19

Source: Steve Halama at Unsplash, Creative Commons

When Shane Seyer was 12, he was sexually exploited by his 16-year-old babysitter Colleen Hermesmann. She became pregnant with Seyer’s child in 1989 and was charged with statutory rape shortly afterward. Instead of being convicted of rape, Hermesmann was declared a juvenile offender under the non-sexual offense of “contributing to child misconduct.” Seyer was subsequently court-ordered to pay child support.

In 1993, at the age of 15, Seyer appealed this decision to the Kansas Supreme Court, arguing he should not be liable for these payments. He maintained that his babysitter (Hermesmann) took advantage of him sexually when he was too young to give consent.

The Kansas Supreme Court ruled against him. The judgment stated that, because Seyer initially consented to the sexual encounters and never told his parents what was happening, he was responsible for supporting the child.

This court case set a precedent for male rape victims to make child-support payments. The financial needs of the children outweigh the court’s interest in deterring sexual crimes against male minors, even if statutory rape is the cause of conception.

More recently, in 2014, Nick Olivas of Arizona was forced to pay over $15,000 in back-payments to a woman who had sex with him when he was 14. She was 20 years old at the time. Commenting on the Olivas case and others like it, Mel Feit, director of the New York-based advocacy group the National Center for Men, told the Arizona Republic newspaper:

“To hold him unresponsible for the sex act, and to then turn around and say we’re going to hold him responsible for the child that resulted from that act is off-the-charts ridiculous… it makes no sense.”

Peter Pollard, co-founder of 1in6, an organization designed to help male assault survivors, explained in an interview with the Good Men Project why we downplay the severity of male sexual assault:

“We’re all raised in a culture that says boys are always supposed to initiate and enjoy a sexual experience and males are never supposed to see themselves or be seen as victims. The easiest default is to blame the victim, to say ‘he wanted it,’ ‘he must have chosen that.’”

These attitudes toward male sexual assault are apparent even in the way these men are treated during their court cases.

In 1996, the court heard the case of County of San Luis Obispo v. Nathaniel J in which a 34-year-old woman became pregnant after sexually exploiting a 15-year-old boy. He was also forced to pay child support, and then Deputy Attorney General Mary Roth alleged:

“I guess he thought he was a man then. Now, he prefers to be considered a child.”

Some professionals, such as Mary Koss from the University of Arizona who published the first national rape study in 1987, even argued that men and boys cannot be raped by women. In a radio interview, Koss stated:

“How would [a man being raped by a woman] happen… how would that happen by force or threat of force or when the victim is unable to consent? How does that happen? I would call it ‘unwanted contact.’”

Research indicates, however, that men can be stimulated and achieve an erection in times of fear and terror, despite not being aroused. Studies range from cases where men report arousal during assault, to scientific experiments that find men have erections under many non-sexual circumstances, including when they are unconscious.

In her research, Myriam Denov, a professor at McGill University who holds the Canada Research Chair in Youth, Gender and Armed Conflict, asserted:

“The professional assumption that sexual abuse by women is less harmful than similar abuse by men has potentially dangerous implications for [male] victims of sexual abuse. If professionals fail to recognize sexual abuse by women as potentially serious and harmful, child protection plans will not be made.”

She goes on to say that, as a result, the experiences of male victims who come forward to disclose sexual abuse by women may be trivialized. These misconceptions can lead to delayed referral to social services, or failure to provide victims with the care and support they require.

Until the idea that women cannot rape men and other rape myths are dispelled, cases where victims are misunderstood and mistreated, and even made to pay child support to their former abusers, are likely to continue.

– Ty LeBlanc, Contributing Writer

The Trauma and Mental Health Report

– Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

-Copyright Robert T. Muller

This article was originally published on Psychology Today

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Inadequate Training Increases Risk of Compassion Fatigue

70Burnout, Caregiving, Featured news, Health, Stress, Trauma, Work March, 18

Source: Pennsylvania National Guard at flickr, Creative Commons

Every afternoon, personal support worker Susan (name changed) struggled with administering medication to a particular elderly patient in the dementia ward where she worked. On one such occasion, fed up with the patient’s behaviour, Susan became so frustrated that she mumbled a profanity, reached over, and pinched the patient’s arm. With a sharp cry of pain, the patient quickly accepted the medication and Susan was able to move on.

Stories of malpractice or poor patient care like this are not as uncommon as one might imagine. Evident from media reports of negligence in hospital settings, such cases can ignite an outcry in the community and prompt questions about individuals’ suitability for caretaking roles. How could someone with a career revolving around caring for others lack empathy?

Grace, an Ontario care worker who witnessed Susan’s behavior firsthand, believes the demanding nature of the job took a physical and mental toll on her co-worker. Having worked for eight years at a residential center for dementia patients, Grace knows from experience just how mentally exhausting the work can be. In an interview with the Trauma and Mental Health Report, Grace explained:

“There’s so much to take care of with these particular patients. When it’s dinnertime, you have to make sure to clean the patient, take them to the dining room, prepare the area for them, feed them, etc. But the next thing you know, they may have soiled themselves or vomited and you have yet another thing to clean when you already have so much to do… There are times when you need to take dirty clothing or dishes from them and they refuse to give them to you or just start yelling at you.”

When faced with the same situation on a daily basis, Grace explains that it’s hard not to become exasperated:

“It can get annoying and even angering at times. It’s hard to control… I didn’t hear much from Susan when I first started working here, but then she began yelling at the patients. I do believe it’s because the stress finally got to her.”

Mental health professionals support Grace’s theory. Overworked employees who are plagued by such feelings of frustration are showing signs of Compassion Fatigue (CF).

Francoise Mathieu, CF specialist and founder of Compassion Fatigue Solutions in Kingston, Ontario, describes the condition on her organization’s website as a gradual emotional and physical exhaustion of helping professionals. While CF is sometimes used interchangeably with Vicarious Trauma (VT), there is a difference between the two. VT is a secondary form of post-traumatic stress disorder, where a worker becomes preoccupied with a specific event or patient problem. On the other hand, CF is an overall decline in the ability to empathize with others.

The American Institute of Stress also differentiates CF from ‘burnout’. With CF, the constant pressure to show compassion toward patients may wear on mental energy stores, leading workers to become emotionally blunted to people and events. Burnout is less dependent on this loss of compassion.

CF is not limited to mental health professionals. It has been shown to affect teachers, social workers, police officers, prison guards, and even lawyers who work with trauma victims. In Grace’s words:

“At first, the stories you hear and the things you see involving the patients really do follow you home. They used to make me feel depressed. Over time, that sensitivity does lessen. After being exposed to this type of thing day after day, you start to lose those feelings.”

According to CF expert Francois Mathieu, once workers begin to experience this emotional exhaustion, they may be prone to moodiness, irritability, difficulty concentrating, intrusive thoughts, feelings of hopelessness, and apathy in both workplace and personal relationships. Fran McHolm, Director of Continuing Education at the Nurses Christian Fellowship has written about how CF can lead to a decrease in general employee happiness, workplace satisfaction, and quality of patient care.

CF is not a rare condition. Results from a 2012 dissertation study by Shannon Abraham-Cook at Seton Hall University show that, out of 111 urban public school teachers in Newark, New Jersey, 90% were at high-risk for CF. In 2010, Crystal Hooper and colleagues from the AnMed Health Medical Center in South Carolina also found that 86% of emergency department nurses exhibited moderate to high levels of CF.

While CF is common in many workplaces, help for employees who are experiencing symptoms, is not readily available. In an interview with the Trauma and Mental Health Report, Isabella, an assistant teacher working with special needs children at a Toronto daycare, describes her experience:

“When we began training, the instructors only talked about how to care for the children and how to work with the different age groups. Management didn’t provide us with anything else. The only thing we can do when feeling overly stressed is go for a break.”

Grace adds that her center for dementia patients fails to directly address employee needs:

“Recently, they added cameras everywhere to prevent poor patient care, but it’s made things worse. Now we are forced to seem especially compassionate and the littlest mistake can lead to a suspension. The management doesn’t try to understand the worker’s view of things at all.”

Dan Swayze, vice president of the Center for Emergency Medicine of Western Pennsylvania, discusses several ways management can address employees’ personal needs pertaining to compassion fatigue. In an article in the Journal of Emergency Medical Services, Swayze writes about the importance of implementing policies and developing programs that can help ease the onset of CF. Teaching employees how to set professional boundaries with patients, conducting meetings to solve individual client issues as a team, and offering counselling services to stressed employees are just a few options administration can take.

And a 2015 study by researcher Patricia Potter and colleagues in the Journal of Continuing Education in Nursing argues for resilience training, a program designed to educate personnel about CF and its risk factors. Workers are taught how to employ relaxation techniques and build social support networks to cope with symptoms that arise from working with difficult populations. Staff members from a US medical center who participated in the training self-reported an increase in their empathy and overall emotional health.

Volunteer crisis hotline operator, Anabel, explains the benefits of these resources in her line of work:

“The staff at the distress center are really considerate of their volunteers. In the training they prepare you for compassion fatigue, encourage volunteers to take care of themselves, and to not take the calls home with you. They also make sure to be available to the volunteers 24/7 in case they need to debrief a call with someone. It really helps to know they’re there to talk to—often after a distressing call.”

Training and intervention programs can help safeguard against the development of compassion fatigue in care workers. But many people working in the field, like Grace and Isabella, have been thrown into care-taking roles with no consideration for the risks to their mental wellbeing. Both women have identified various ways of coping as a stopgap until they receive the assistance and support they need.

Isabella suggests taking full advantage of breaks every few hours:

“Whenever you feel overwhelmed, go for a break right away—even if it’s just to the washroom or for a coffee… When you leave and come back, you feel refreshed. I’m lucky that I live so close to my workplace that I can go home during lunch.”

Grace recommends taking a deep breath and focusing on any positive aspect of the job:

“I learn so much from the patients. Hearing their stories, you can end up getting really close to some of them. I try to listen to them when I can and when I see the positive effect that has on them, I feel very fulfilled.”

These coping mechanisms do not work for everyone, which is why early intervention is so important. While camera implementation has prevented some inappropriate conduct like Susan’s from continuing, it doesn’t address the root problem.

“There are times where I get angry,” Grace admits. “I can’t always entertain patients or be friendly. I try… but it’s so hard… I know a lot of people, like myself, are really sensitive, which is why we are so emotionally affected by this job. There’s no stress management or counselling here, but… these training programs could really help.”

For many helping professionals, compassion fatigue may be inevitable. Cases like Susan’s show that the wellbeing of individuals in caretaking roles directly influences the quality of care that patients will receive. Support in the form of training programs and other preventative measures can make a difference in the lives of these workers, and, improve patient care.

–Anjali Wisnarama, Contributing Writer, The Trauma and Mental Health Report.

–Chief Editor: Robert T. MullerThe Trauma and Mental Health Report. 

Copyright Robert T. Muller.

This article was originally published on Psychology Today

Robert T Muller - Toronto Psychologist

Parkinson’s Takes its Toll on Family Caregivers

20Caregiving, Family Dynamics, Featured news, Health, Neuroscience, Parenting, Stress January, 18
Source: Lesia Szyca, Trauma and Mental Health Report Artist, used with permission

Her hands and legs trembled, she could no longer drive. Cognitively, she declined. Her balance was affected, and she often fell. My grandmother Anna (name changed) had Parkinson’s Disease. It took over her life.

As a vibrant and independent woman, Anna had always been eager to help her family. Then, as the disease progressed, roles began to shift, and younger family members had to care for her.

Anna battled Parkinson’s Disease (PD) for more than 15 years. A degenerative neurocognitive condition, it is caused by a gradual loss of dopamine producing cells in the brain that worsens over time leading to tremors, cognitive impairment, and emotional changes.

To date, there is no cure, so a combination of medication and therapy is the only treatment. Anna battled this debilitating illness with no chance of recovery.

As she declined, so did her capacity to be self-sufficient. Her motor abilities drastically decreased, and her memory continued to diminish. She required supervision the majority of the day, and was unable to perform her favorite activities, such as baking, making crafts, sewing, and gardening.

Before Anna was admitted to a long-term facility in 2015, caring for her became a full-time job shared by my mother, my sisters, and grandfather. For my mother Charlotte (name changed), seeing her mother’s deterioration was particularly difficult. Unexpectedly shouldering the role of primary caregiver took a toll:

“At times on my own, I would go in the shower and cry. At other times too, the circumstances made me short and impatient with people. I would be intolerant and lose my temper due to the frustration.”

A study by Laurence Solberg and colleagues examined the emotional and mental health of adult children who are primary caregivers to ill parents. In administering a survey to identify stress levels, the researchers found that caregivers had heightened levels of negative feelings, such as anxiety, while caring for a parent. They found that being a caregiver of an elderly, sick parent adversely affected personal health. However, caregivers balancing the needs of an ill parent with those of their own children did not experience elevated stress compared to individuals without children.

But my own mother’s experience was different. She found it demanding to balance caring for an ill parent and caring for her own children.

“If you only have to balance an elderly parent and a job, it’s much easier than if you also have a family. With children, there’s additional responsibility. Anna required some priority, but I couldn’t lose focus on my children.”

When researchers Caroline Kenny and colleagues examined the experiences of family caregivers, many expressed distress over feeling unprepared for the role. My mother felt the same:

“We didn’t know how to properly care for Anna. We didn’t know how to lift her correctly, or how to deal with her frustration. On top of having the responsibility of caring for her, we had the added stress of not knowing how to handle her properly.”

And finding time for herself was not easy for my mother either. Solberg’s research supports this predicament: three quarters of caregivers reported decreased time for personal hobbies and interests. Charlotte said:

“I do think these responsibilities cause you to neglect your usual pastimes. I went from work to Anna’s home to my home. There wasn’t time for myself.”

In a study by Vasiliki Orgeta and colleagues, published in the International Psychogeriatrics Journal, the authors reported on the importance of social support for coping with the strain of becoming a caregiver.

For me, it was painful to see my grandmother’s decline alongside my own mother’s struggle to care for her. But consistent with Orgeta’s findings, I’ve found that relying on friends and family, and my social support system, has helped alleviate the anxiety of seeing my family in distress.

No one’s experience is the same; people cope in their own ways. For my mother, the situation has been heartbreaking:

“Seeing a person who is loving and vibrant, such a nurturing mother, become a person who is not nurturing anymore, not strong, whether emotionally or physically, is agonizing. It’s a part of life, but it’s hard to accept.”

–Alyssa Carvajal, Contributing Writer, The Trauma and Mental Health Report. 

–Chief Editor: Robert T. MullerThe Trauma and Mental Health Report.

Copyright Robert T. Muller.

This article was originally published on Psychology Today

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Parkinson's Takes its Toll on Family Caregivers

00Caregiving, Family Dynamics, Featured news, Neuroscience, Parenting, Stress January, 18
Source: Lesia Szyca, Trauma and Mental Health Report Artist, used with permission

Her hands and legs trembled, she could no longer drive. Cognitively, she declined. Her balance was affected, and she often fell. My grandmother Anna (name changed) had Parkinson’s Disease. It took over her life.

As a vibrant and independent woman, Anna had always been eager to help her family. Then, as the disease progressed, roles began to shift, and younger family members had to care for her.

Anna battled Parkinson’s Disease (PD) for more than 15 years. A degenerative neurocognitive condition, it is caused by a gradual loss of dopamine-producing cells in the brain that worsens over time leading to tremors, cognitive impairment, and emotional changes.

To date, there is no cure, so a combination of medication and therapy is the only treatment. Anna battled this debilitating illness with no chance of recovery.

As she declined, so did her capacity to be self-sufficient. Her motor abilities drastically decreased, and her memory continued to diminish. She required supervision the majority of the day, and was unable to perform her favorite activities, such as baking, making crafts, sewing, and gardening.

Before Anna was admitted to a long-term facility in 2015, caring for her became a full-time job shared by my mother, my sisters, and grandfather. For my mother Charlotte (name changed), seeing her mother’s deterioration was particularly difficult. Unexpectedly shouldering the role of primary caregiver took a toll:

“At times on my own, I would go in the shower and cry. At other times too, the circumstances made me short and impatient with people. I would be intolerant and lose my temper due to the frustration.”

A study by Laurence Solberg and colleagues examined the emotional and mental health of adult children who are primary caregivers to ill parents. In administering a survey to identify stress levels, the researchers found that caregivers had heightened levels of negative feelings, such as anxiety, while caring for a parent. They found that being a caregiver of an elderly, sick parent adversely affected personal health. However, caregivers balancing the needs of an ill parent with those of their own children did not experience elevated stress compared to individuals without children.

But my own mother’s experience was different. She found it demanding to balance caring for an ill parent and caring for her own children.

“If you only have to balance an elderly parent and a job, it’s much easier than if you also have a family. With children, there’s additional responsibility. Anna required some priority, but I couldn’t lose focus on my children.”

When researchers Caroline Kenny and colleagues examined the experiences of family caregivers, many expressed distress over feeling unprepared for the role. My mother felt the same:

“We didn’t know how to properly care for Anna. We didn’t know how to lift her correctly, or how to deal with her frustration. On top of having the responsibility of caring for her, we had the added stress of not knowing how to handle her properly.”

And finding time for herself was not easy for my mother either. Solberg’s research supports this predicament: three-quarters of caregivers reported decreased time for personal hobbies and interests. Charlotte said:

“I do think these responsibilities cause you to neglect your usual pastimes. I went from work to Anna’s home to my home. There wasn’t time for myself.”

In a study by Vasiliki Orgeta and colleagues, published in the International Psychogeriatrics Journal, the authors reported on the importance of social support for coping with the strain of becoming a caregiver.

For me, it was painful to see my grandmother’s decline alongside my own mother’s struggle to care for her. But consistent with Orgeta’s findings, I’ve found that relying on friends and family, and my social support system, has helped alleviate the anxiety of seeing my family in distress.

No one’s experience is the same; people cope in their own ways. For my mother, the situation has been heartbreaking:

“Seeing a person who is loving and vibrant, such a nurturing mother, become a person who is not nurturing anymore, not strong, whether emotionally or physically, is agonizing. It’s a part of life, but it’s hard to accept.” 

–Alyssa Carvajal, Contributing Writer, The Trauma and Mental Health Report. 

This article was originally published on Psychology Today

feature-_lg4-470x260_1-3169d1a3d17f2d96a339b23b310942e2c89804a7

Let's Eliminate Physical Restraints in Group Homes

00Adolescence, Autism, Caregiving, Ethics and Morality, Featured news, Trauma September, 17

Source: Valentine Svensson at flickr, Creative Commons

In April 2015, Justin Sangiuliano, a seventeen-year-old diagnosed with Autism, was physically restrained at his group home in Oshawa, Canada. To control an aggressive outburst, two staff members grabbed his arms and placed him on the floor as he kicked and screamed. Staff released him once he stopped struggling, but Justin never got up. He was rushed to the hospital without a heartbeat and died five days later.

Justin’s death, and the deaths of other children in Ontario group homes, raises questions about the provincial child protection system and the efficacy of using force to restrain vulnerable populations.

The Canadian Institute for Health Information defines physical restraint as when “a person is physically held to restrict his or her movement for a brief period of time in order to restore calm to the individual.”

Ontario regulations state that physical restraints can be used to prevent group home residents from injuring themselves, injuring others, or causing significant property damage. Restraints should only be used after less intrusive methods have been applied and deemed ineffective.

But a Toronto Star investigation found that physical intervention is being used as a frequent form of discipline in these homes. The report documented that, between 2010 and 2015, some 45,000 restraints were used in Ontario residential programs to discipline vulnerable children and youth. Restraints were used in more than one third of the 1,200 serious occurrence reports filed in 2013 by group homes in Toronto.

While there may be some benefits to using physical restraint in controlling violent children, inappropriate use of these practices suggests a power and control issue among some group home staff.

The Toronto Star investigation reported an instance of a child begging to be released: “I’m going to pee myself.” The staff members refused to let go of the child until he urinated on himself.

In another study by social work professors Laura Steckley and Andrew Kendrick at the University of Strathclyde in Glasgow, Scotland, children spoke to the injuries they incurred as a result of forcible restraint:

“Half the time when residential staff restrain you they just purely hurt you. I get hurt most of the time. I had a mark from a carpet burn, hurting on my shoulder, and marks on my chest.”

Additionally, preventable deaths and high rates of physical intervention on children with developmental disabilities demonstrate inadequate training of residential staff.

In an interview with the Toronto Star, Kim Snow, an associate professor at Ryerson University’s School of Child and Youth Care, speaks to the dangers of restraining children with developmental disabilities without safe and adequate staff training:

“Although the provincial government lists six approved training programs in the use of physical restraints, no one has looked at which techniques are best. Is one safer than the other? Should one be used in certain situations and not others? Sometimes staff can’t contain kids using a restraint. So what happens when those situations occur? Until we can answer those questions, the risk of harm as a result of restraints is quite high for both staff and kids.”

As an advocate for child safety within the Ontario residential system for over three decades, Snow wants the province to track the use of restraints more closely.

“It takes highly skilled staff to work with children with histories of trauma and accompanying rage to be able to contain them without physically intervening. When people lack those skills they become frightened and they intervene much too quickly. When that happens, the child or youth’s physical and psychological safety is at risk.”

Research by the Residential Child Care Project at Cornell University addresses the physical and psychological harm that can result from restraint use on a vulnerable population. The 2008 study found restraints to be “a considerable risk to vulnerable youth, are intrusive, have a negative effect on the treatment environment, and have a profound effect on those youth who have experienced trauma in their lives.”

And a 2013 report by Youth Leaving Care, a working group created by the Ontario government to investigate the quality of care vulnerable youth receive in group homes, identified high frequency of restraint use to be a major problem, and recommended the government “works with group home providers to clarify and reinforce policies and best practices to make sure they are followed.”

So, what is being done to improve the care of children with disabilities in Ontario residential homes?

Irwin Elman, the Provincial Advocate for Children and Youth, leads a group called Youth Leaving Care that caters to young people who grew up in Ontario’s group homes.

While certain advocates of children and youth in residential homes call for improved training to properly implement restraints, Elman believes these homes should eliminate restraint altogether to limit preventable deaths.

“These are children who often come with experiences of violence or serious mental health challenges. How in hell do we expect them to achieve to their full potential, to heal, to find supportive relationships in those kinds of environments?”

–Lauren Goldberg, Contributing Writer, The Trauma and Mental Health Report. 

–Chief Editor: Robert T. MullerThe Trauma and Mental Health Report

Copyright Robert T. Muller.

This article was originally published on Psychology Today

feature-_lg4-470x260_1.jpg

Let's Eliminate Physical Restraints in Group Homes

00Adolescence, Autism, Caregiving, Ethics and Morality, Featured news, Trauma September, 17

Source: Valentine Svensson at flickr, Creative Commons

In April 2015, Justin Sangiuliano, a seventeen-year-old diagnosed with Autism, was physically restrained at his group home in Oshawa, Canada. To control an aggressive outburst, two staff members grabbed his arms and placed him on the floor as he kicked and screamed. Staff released him once he stopped struggling, but Justin never got up. He was rushed to the hospital without a heartbeat and died five days later.

Justin’s death, and the deaths of other children in Ontario group homes, raises questions about the provincial child protection system and the efficacy of using force to restrain vulnerable populations.

The Canadian Institute for Health Information defines physical restraint as when “a person is physically held to restrict his or her movement for a brief period of time in order to restore calm to the individual.”

Ontario regulations state that physical restraints can be used to prevent group home residents from injuring themselves, injuring others, or causing significant property damage. Restraints should only be used after less intrusive methods have been applied and deemed ineffective.

But a Toronto Star investigation found that physical intervention is being used as a frequent form of discipline in these homes. The report documented that, between 2010 and 2015, some 45,000 restraints were used in Ontario residential programs to discipline vulnerable children and youth. Restraints were used in more than one third of the 1,200 serious occurrence reports filed in 2013 by group homes in Toronto.

While there may be some benefits to using physical restraint in controlling violent children, inappropriate use of these practices suggests a power and control issue among some group home staff.

The Toronto Star investigation reported an instance of a child begging to be released: “I’m going to pee myself.” The staff members refused to let go of the child until he urinated on himself.

In another study by social work professors Laura Steckley and Andrew Kendrick at the University of Strathclyde in Glasgow, Scotland, children spoke to the injuries they incurred as a result of forcible restraint:

“Half the time when residential staff restrain you they just purely hurt you. I get hurt most of the time. I had a mark from a carpet burn, hurting on my shoulder, and marks on my chest.”

Additionally, preventable deaths and high rates of physical intervention on children with developmental disabilities demonstrate inadequate training of residential staff.

In an interview with the Toronto Star, Kim Snow, an associate professor at Ryerson University’s School of Child and Youth Care, speaks to the dangers of restraining children with developmental disabilities without safe and adequate staff training:

“Although the provincial government lists six approved training programs in the use of physical restraints, no one has looked at which techniques are best. Is one safer than the other? Should one be used in certain situations and not others? Sometimes staff can’t contain kids using a restraint. So what happens when those situations occur? Until we can answer those questions, the risk of harm as a result of restraints is quite high for both staff and kids.”

As an advocate for child safety within the Ontario residential system for over three decades, Snow wants the province to track the use of restraints more closely.

“It takes highly skilled staff to work with children with histories of trauma and accompanying rage to be able to contain them without physically intervening. When people lack those skills they become frightened and they intervene much too quickly. When that happens, the child or youth’s physical and psychological safety is at risk.”

Research by the Residential Child Care Project at Cornell University addresses the physical and psychological harm that can result from restraint use on a vulnerable population. The 2008 study found restraints to be “a considerable risk to vulnerable youth, are intrusive, have a negative effect on the treatment environment, and have a profound effect on those youth who have experienced trauma in their lives.”

And a 2013 report by Youth Leaving Care, a working group created by the Ontario government to investigate the quality of care vulnerable youth receive in group homes, identified high frequency of restraint use to be a major problem, and recommended the government “works with group home providers to clarify and reinforce policies and best practices to make sure they are followed.”

So, what is being done to improve the care of children with disabilities in Ontario residential homes?

Irwin Elman, the Provincial Advocate for Children and Youth, leads a group called Youth Leaving Care that caters to young people who grew up in Ontario’s group homes.

While certain advocates of children and youth in residential homes call for improved training to properly implement restraints, Elman believes these homes should eliminate restraint altogether to limit preventable deaths.

“These are children who often come with experiences of violence or serious mental health challenges. How in hell do we expect them to achieve to their full potential, to heal, to find supportive relationships in those kinds of environments?”

–Lauren Goldberg, Contributing Writer, The Trauma and Mental Health Report. 

–Chief Editor: Robert T. MullerThe Trauma and Mental Health Report

Copyright Robert T. Muller.

This article was originally published on Psychology Today

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Photography Documenting Mental Illness Draws Criticism

00Caregiving, Emotional Intelligence, Empathy, Featured news, Health, Relationships, Resilience March, 17

Source: ethermoon on flickr, Creative Commons

For the past six years, Melissa Spitz of St. Louis, Missouri has been using photography to illustrate her mother’s experience with mental illness, referring to it as a form of “documentary photography”.

The photographs taken of Melissa’s mother Deborah are shared on Melissa’s professional website and on her Instagram in a project she calls “You Have Nothing to Worry About.” They artfully depict Deborah’s lifelong struggle with bipolar disorder, schizophrenia, depression, dissociative identity disorder, and problem drinking.

In an interview with Time Magazine, Melissa explained that the series aims to provide an intimate look into the life of an individual suffering from mental illness. She told Dazed Digital:

“For me, mental illness has a face and a name—and that’s mum.”

Melissa first became aware of her mother’s mental-health problems when she was a child, and Deborah had to be institutionalized for “psychotic paranoia”. After years of anger and blame, Melissa picked up her camera as a way of confronting her mother’s disorder head-on.

The project became an emotional outlet for Melissa to facilitate healing. In an interview with Aint Bad Magazine, she explained:

“By turning the camera toward my mother and my relationship with her, I capture her behavior as an echo of my own emotional response. The images function like an ongoing conversation.”

Research published in the Journal of Public Health has shown that creative media can serve as powerful tools to help people express feelings of grief. Art therapy specifically can provide a means of expression, relieve emotional tension, and offer alternative perspectives.

Through her project, feelings of pain and hurt that Melissa held toward her mother were ameliorated, and she found herself feeling greater empathy, visually acknowledging her mother’s struggle with mental illness.

While the project is not without its merits, the provocative nature of the photographs—ranging from Deborah’s hospitalization to images of her unclothed and bruised—may elicit shock and discomfort in viewers.

Which raises the question: where do we draw the line between exploitation and freedom of expression in art depicting mental illness?

Laura Burke, a drama therapist from Nova Scotia, Canada, sees Melissa’s project as crossing an ethical line. Laura was diagnosed with schizophrenia in 2005, and has suffered from depression her entire life. She believes that people with mental illness are often spoken for, and this is a common trap in representing their lives through art.

In an interview with The Trauma and Mental Health Report, Laura commented on Melissa’s project:

“It appears sensitively done, but the line between exploitation and reverence is a tough one to walk. If the focus was more explicitly on Spitz’s perspectives of her mother, and not an objective account of how things happened, which is sometimes how a photo can appear, I might feel more comfortable with it.”

Another issue that can arise is the power differential between photographer and subject. Even when consent is provided, subjects who struggle with mental health issues are particularly vulnerable when someone else is formulating the vision and acting as “the voice” of the art piece.

Laura addressed this concern in her interview:

“I feel that focusing more on the family member’s experience, and less on the subject living with the mental illness would be a less exploitative choice.”

Melissa is aware of the criticism her project has garnered from audiences. In an interview with Time Magazine, Melissa said:

“I am fully aware that my mother thrives on being the center of attention and that, at times, our portrait sessions encourage her erratic behavior. My hope for the project is to show that these issues can happen to anyone, from any walk of life and that there is nothing to be ashamed about.”

Despite the criticism, art can be transformative for both the artist and the audience by exposing mental illness in its rawest form. Max Houghton, a Senior Lecturer in Photojournalism and Documentary Photography at the London College of Communication, appreciates what Melissa’s project can do, and how it can help break down stigma surrounding mental illness.

Houghton told BBC News:

“I think photojournalism is criticised when it looks at the miserable side of life and depressing issues. However, in the right hands, photography can be used as a tool to discover and tell important stories differently”.

Projects like Melissa’s You Have Nothing to Worry About often spark much needed discussion around mental illness and are important and necessary to address stigma. And yet, one is left wondering whether such depictions of the vulnerable may do more harm than good.

–Nonna Khakpour, Contributing Writer, The Trauma and Mental Health Report

–Chief Editor: Robert T. MullerThe Trauma and Mental Health Report

Copyright Robert T. Muller

This article was originally published on Psychology Today