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Assisted Dying: We Need a Larger Conversation

April 4, 201900Aging, 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

When Male Rape Victims Are Accountable for Child Support

February 21, 201900Adolescence, 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

Inadequate Training Increases Risk of Compassion Fatigue

March 15, 201870Burnout, 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. Muller, The Trauma and Mental Health Report.

Copyright Robert T. Muller.

This article was originally published on Psychology Today

Parkinson's Takes its Toll on Family Caregivers

January 18, 201800Caregiving, 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

Parkinson’s Takes its Toll on Family Caregivers

January 18, 201820Caregiving, 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.