Balance support
•
advocacy
Taking Care supporting a loved one with a mental disorder
Jumping through hoops
Finding the right mix of education and boundaries
Family matters
Dealing with grief and mental disorders Also in this issue: How to advocate for yourself or someone else
•
awareness •
winter 2011
6 th An nu al
by
ou fT l Go
nt & Fly-Fishing De me a r rn
$120,000 raised on September 9, 2010
Thanks to our sponsors, donors, golfers & anglers! Your participation in the 2010 Fish & Chips event and outstanding support helps Horizon Housing Society and CMHA - Calgary Region bring safe, supportive housing and community-based mental health programs to Calgarians. Presenting Sponsor
First place anglers! Bob Schuett, Chris Wallace (presenting) & Chris Graham
Honorary Chair Jim Dinning (2nd from left), Larry Krause, Mark Love, Martin Bunting & Darol Hamilton
First place golfers! Davis Elliott, George McKenzie, Brock Robillard & Dave Gregory
Honorary Chair
Special thanks to:
Jim Dinning Chair, Western Financial Group & Canada West Foundation Chancellor, University of Calgary
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Join us for the 7th Annual
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winter issue 2011 Publisher
Canadian Mental Health Association – Calgary Region in partnership with RedPoint Media Group Inc. General Manager
Carmen Wyatt
Managing Editor
Abby Miller
Editorial Committee
Science Advisor – Dr. Deborah Dobson, Jaimi Thomas, Ruth O’Driscoll, Carmen Wyatt, Trudy DeBecker, Kimberley Feist Creative Director
Anders Knudsen Art Director
David Willicome Production artist
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Nicole Dunsdon, Susan Pederson, Jocelyn Strickland, Carmen Wyatt Illustrations
David Willicome Subscriptions: $10.00/year Contact: RedPoint Media Group Inc.
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Balance magazine is published three times a year, with 11,000 copies distributed on newsstands throughout the city and 2,000 copies distributed by the Canadian Mental Health Association – Calgary Region. The information contained in this magazine is not intended to be a substitute for professional/medical advice. Always seek the advice of your physician or a qualified health professional before starting any new treatment. Statements, opinions and viewpoints expressed by the writers of this publication do not necessarily represent the views of the publisher. Copyright 2010 by RedPoint Media Group Inc. No part of this publication may be reproduced without the express written consent of the publisher.
Canadian Mental Health Association – Calgary Region
Suite 400, 1202 Centre Street S.E. Calgary, AB T2G 5A5 Telephone: (403) 297-1700 Fax: (403) 270-3066
Balance 4 p.
visit www.cmha.calgary.ab.ca
Caring for the Caregiver Supporting and caring for a loved one with a mental illness must include taking care of yourself. Message from the Executive Director
p.
5
6
p. Feature story Jumping Through Hoops
Caring for a loved one with a mental disorder.
10 p.
Taking Care Burning Yourself Out Caregivers must
remember to take care of themselves.
Resources Top 10
When advocating for yourself or someone you care about, it is best to have a plan.
p.
12
Family Matters When the Dream Must Change
Grieving is a natural part of having a family member with a mental disorder.
14
p.
Getting Involved Giving Back Volunteer with local programs.
winter 2011 / Balance 3
Message from the Executive Director
Caring for the
aregiver c
1
A
number of years ago, I had the pleasure of attending the CMHA Family Support Program’s weekly Drop-In Peer Support group. The group is led by family members of individuals experiencing a mental disorder. I was struck by the care, compassion, love and concern expressed by family caregivers. Yet, at the same time, people expressed frustration, helplessness, feelings of being overwhelmed and, at times, feeling at wits’ end. Providing care for a family member can be daunting at best, but for families who provide care for a loved one with a mental disorder, there can be additional challenges. The fear of stigma and judgment often associated with a mental disorder frequently prevents individuals and families from seeking help or support until the situation becomes a crisis. Families try desperately to cope on their own, doing their very best, but aren’t sure when and how to best support the person, no matter how much they care about 4 Balance / winter 2011
their loved one. People may have had life examples of how to offer care and comfort to someone with a physical ailment, but may not recall an example of caring for and comforting someone with a mental disorder. If the right treatment and support plans aren’t in place, families and friends may feel stressed to the breaking point while they provide care, time and financial resources for their loved one’s well-being. Who cares for the caregiver? Is it OK to ask for help? Will I be perceived as weak and uncaring if I ask for help? These are critical questions that will be addressed in this issue of Balance. This issue offers healthy and helpful strategies caregivers can use to provide appropriate support and advocacy while maintaining their own health and well-being. On behalf of the CMHA – Calgary Region, we hope you find that this edition of Balance offers hope, useful information, and practical strategies for those who share the journey of a loved one’s path to recovery.
Hansen Photography
Supporting and caring for a loved one with a mental disorder must include taking care of yourself.
Judy Martin
Executive Director Canadian Mental Health Association – Calgary Region
Resources
Top 10 tips on advocating for
someone you care about – or yourself
It’s best to have a plan and a well-understood goal if you want to help empower someone to get the support and treatment they need.
1 5 By Carmen Wyatt
Talk to the person you are advocating for, so you are both clear on your roles and have a common goal.
Document conversations about care, commitments and treatment plans. Write down who’s speaking, who they work for, topics discussed and any follow-up or action plans.
2 3 4
You can advocate in many ways, from attending appointments as an observer or note-taker to coaching the person on how to speak for him/herself or, as a last resort, speaking for the person. Together, decide which is best for the situation. Write down concerns or important information before meetings or appointments so these items aren’t forgotten. Be clear, calm and organized when communicating. The best way to make your point is by using respectful language and a calm tone of voice.
8 9
The best option for your loved one may not be the easiest option for you, other caregivers or family members, but helping the person achieve their goal may also benefit the people who care for them in the long run.
6 10 7
Don’t get sidetracked at appointments or meetings. Talking about unrelated topics eats up time and distracts from the goal.
Advocate for realistic actions or options the person understands completely, agrees with and can follow.
If, as a caregiver and/or advocate, you need support for yourself, remember to ask for it and take time for it.
Learn what resources are available for your loved one or yourself in your community, including CMHA – Calgary Region’s Family Support or Advocacy programs and Alberta Health Services’ Patient Relations. winter 2011 / Balance 5
Feature Story By Jocelyn Strickland
hoops
Jumping through
Caring for a family member with a mental disorder takes the right mix of education, communication and self-care. 6 Balance / winter 2011
Feature Story
y poor mother. There she was, lying on my couch, head in hands, unable to speak. I brought her a cup of tea; I told her everything would be OK and that we would get through this. But it was too much for even me to bear, and I headed off to bed, worried that I had not done enough to take care of her. It was less than an hour since I’d returned from the hospital, where I had just had a miscarriage and spent the night until they could control the hemorrhaging. That is why my mother could not function. That is why I had to take care of her. It is a scenario that has played out countless times during our lives together, as my sister, father and I struggled to understand a mother who was living with a mental disorder — in her case, borderline personality disorder. Sadly, in those early days, the disorder was not something anyone had even heard of, so treatment was virtually non-existent. Among other symptoms, like crippling depression and “black and white” thinking, my mother’s mental disorder left her with few resources to empathize with the pain of others. Basically, when one of us was experiencing an emotional, medical or other crisis, it became my mother’s crisis, and we soon learned to take care of her needs over our own. But as my father said, “It was never enough. Nothing anyone ever did for her ever made her happy.” After years of trying to do just that, he gave up, and they divorced when I was 13, leaving my sister and I to try to grapple with a rather sizeable elephant in the room that still didn’t have a name. Looking for just the right hoop to jump through over the years — from behaving like a perfect angel when I was a small child to attempting to rescue her from the
consequences of myriad poor choices as an adult — became the defining theme for our relationship. We were not alone. Family members of those struggling with severe mental disorders are forced to live in a world that is at once frightening, overwhelming and isolating. Aaron Korneychuk, counsellor with the Family Support program and Suicide Bereavement program at CMHA, says that having a member of the family who is living with a mental disorder impacts the entire family unit. Depending on the type of illness and how long a family has been affected by it, family members will face different struggles and need to work on building different resources. “With children who have grown up with a parent who has a mental illness, there is usually a lot of confusion, especially if it isn’t talked about,” says Korneychuk. “Their sense of reality and the way things should be has been affected because things were not ‘normal,’ and they don’t know what the mental illness means. And they don’t learn that they should have set boundaries around caring for that parent, because often they didn’t have a choice.” Setting boundaries is a key component in caring for a loved one with a mental disorder and central to the Family Support program at CMHA. Boundaries can include things like no longer “doing everything” for the person winter 2011 / Balance 7
Feature Story
“We still don’t talk about it, except once my mom referred to it as ‘his little oopsy.’” Korneychuk says that it is still extremely common for people not to talk openly about mental illness, especially among families, because they are often blaming themselves or each other as the cause of the illness. “Blame can also be put on the person with a mental illness, but if people would learn to communicate and educate themselves about the disorder, they can avoid a great deal of pain, learn some new skills as far as being a caregiver, and move forward as a family, where this doesn’t have to be how they are defined.” Linda Thompson* says that the past 10 years living with her husband have been “quite an education” as she has had to learn to navigate the highs and lows of his bipolar disorder. “Some days are better than others,” she says. “I find myself getting frustrated or angry with him, and I have to remind myself that this isn’t personal; it’s his illness.” Thompson, now in her 60s, has never known her husband without the disorder (he was diagnosed in his 30s) and says that while time has mellowed the symptoms, maturity and educating herself about his illness have mellowed her reactions to those things that may have triggered her in the past. My mother has gotten older, too. Now in her 70s, she has found some resources to manage her disorder, while we both still struggle with breaking old patterns of rescuing her. I realize now, perhaps too late, that I was doing her a disservice by not allowing her to find the resources to help her begin to recover. I also see, like many family members who have been affected by a loved one’s mental disorder, that my role as her caregiver gave me a certain power, a sort of “one up” over my mother that persists to this day. It has coloured my view of her, and I still tend to see her as “less than” when she deserves to be seen as the vital, competent survivor that she is. After all, it has taken so much strength for her to get to where she is today — more than I’ll ever know.
“Set boundaries about how much you will do for them, and allow them to feel empowered by doing things for themselves.” and setting personal boundaries about how that person may speak to you. “If someone is in a crisis, and you are picking up after them and making all their meals, that’s fine while they need that help,” Korneychuk says. “But when the crisis period is over, it is actually better for their recovery if you begin to set boundaries about how much you will do for them, and allow them to feel empowered by doing things for themselves.” It is important to remember that mental disorders are varied. Some people will go through treatment and find their way to a healthy, balanced life. The more severe the disorder, however, the more likely the situation is to persist and require the family to learn, grow and adjust. Children, like myself, who grew up “parenting” a parent often have different sets of skills they must learn, compared to a parent, for example, who is experiencing a teen going through mental illness for the first time. 8 Balance / winter 2011
While I had to learn to address the effects of growing up in a home impacted by mental illness for decades, many families may be taken out at the knees when a mental disorder diagnosis first hits their home. Samantha Reece* says her family was at a complete loss as they watched her young brother deal with substance abuse and then became completely derailed when he attempted suicide. “He used to have terrible fights with my parents, but because I was out of the house by then, I never heard about it from them. I’d come over there and the closet door would be ripped off or the coffee table would be broken. When he tried to kill himself, they didn’t even tell their supposed best friends,” she says angrily. “In fact, he tried to kill himself on Friday, and on Sunday they just went ahead and had their Grey Cup party, just like they had been doing for 15 years, while he was in the psychiatric ward.
*names have been changed
Feature Story
Caregivers’ wish list
1 2
Family members who are the caregivers of those with mental disorders want many things, namely for the illness to go away and for life to return to “normal.” Since mental illness is a part of life, here is a wish list for caregivers that is attainable and will have a positive impact in your lives.
3 4
Time away — A chunk of time to go for a swim, take a walk, or just do something to care for and nourish yourself. It may seem impossible to think about leaving a loved one, even for a few hours, but the best way to help them is to care for yourself. Help — You may need help to navigate the mental health care system, and to know where to find help and resources for your loved one.
Information — Accurate, thorough
information about a loved one’s disorder. Support network — Friends and family who are not afraid to talk openly about the disorder and, while they may not be able to offer expert advice, are there to listen — without judgment and without trying to “fix” things.
CMHA offers a six-week program called Capable Carers, which begins to look at these and other caregiver needs. It offers hope to families who are in the midst of dealing with a mental disorder diagnosis. For more information, visit www.cmha.calgary.ab.ca or call (403) 297-1700.
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CMHA- Calgary Region’s fund-raising goal for fiscal year 2010/2011 is $5.37 million. The estimated cost of raising these funds is 8% of CMHA’s total expenditure budget. Proceeds will be used to provide supportive programs for people living with a mental illness, public education, and advocacy, unless otherwise directed by the donor. If you have questions, please call Donor Relations at (403) 297-1700.
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winter 2011 / Balance 9
Taking Care By Susan Pederson
out
Burning yourself When caregivers focus too much on others without practising self-care, it can lead to compassion fatigue.
10 Balance / winter 2011
Taking Care
R
achel Davis* had had enough. After months of supporting her friend Kayla* through episodes of severe self-harm, which eventually led to diagnoses of several mental disorders, Kayla was back from a $25,000 stay at a recovery centre. Now Rachel found herself on the other end of the phone line with Kayla, who had just burned herself — again. “I felt like I had tried everything,” Davis says. “I had spent so many hours and days on the phone with Kayla, helping her through each crisis, and one day I just couldn’t take it anymore. “I just stopped answering her calls,” she says, saying that at the time she felt “nothing” toward her friend. Caring for a loved one who is living with a diagnosis of mental disorder can be frightening, draining and overwhelming. Maintaining a healthybalancethroughthesetimes can seem impossible, as many caregivers struggle just to get through each day. Some do find a balance and support system that enable them to manage the effects of their loved one’s illness, but for others, burnout or compassion fatigue becomes the price they pay for caring too much. “Some people get so focused on caring for the other person that they forget their own needs, and they get to a point where they just can’t do it anymore,” explains Aaron Korneychuk, counsellor with the Family Support program and Suicide Bereavement program at CMHA. Symptoms of compassion fatigue may include physical effects, such as fatigue and exhaustion, frequent headaches or frequent indigestion. There are cognitive effects, like difficulty focusing, feeling “spaced out” or pessimistic thinking. Caregivers can also experience emotional effects of compassion
fatigue such as feeling detached, angry and hopeless, or becoming negative and sarcastic. They may question their purpose on a spiritual level, or have a sense of disbelief about the whole situation. Volunteers and professionals who work in the mental health field are just as susceptible to compassion fatigue as others in the care services. Practising self-care and setting boundaries with those who are struggling with mental disorders is critical, stresses Korneychuk. Boundaries are the “comfort zones” of human interaction and include appropriate and inappropriate ways to relate to each other. People with certain mental disorders can
support friends or family, have trouble coping. Regaining that control over your own life choices takes time and hard work, but making that commitment to yourself, whether you are a mental health professional or not, allows you to gather enough strength to truly be of assistance to the person struggling with mental illness. And, hopefully, burnout can be avoided. “At the time, I just felt numb when I stopped taking her calls,” says Davis. “But now I see it as a symptom of having been too involved and not setting those boundaries I needed to keep myself healthy… It’s easy to say that you have to set boundaries, but it was the last thing she wanted me to do, and felt impossible at the time. So because I hadn’t done it before, then I
“At the time, I just felt numb when I stopped taking her calls, but now I see it as a symptom of ... not setting those boundaries I needed to keep myself healthy.“ make a lot of requests for help, crossing into the comfort zones of the people around them, especially their family and those taking care of them, making it difficult to practise normal self-care. For example, if your family member is frequently suicidal, angry and sad, it is easy for their needs to become more important than your own. Boundaries can be crossed in many ways, and sometimes caregivers don’t notice it has happened until they find themselves exhausted. Even the best-intentioned mental health workers and volunteers who think they are taking care of themselves may need to take a complete break from their field, and may also benefit from counselling. So it’s no wonder that those who aren’t trained in the mental health field, but who are desperately trying to
ended up shutting her out completely, which, once I regained some strength and perspective, I felt terrible about.” Davis says she now understands the limits to her ability to help — for example, that she cannot help “cure” Kayla — and that she can also communicate her feelings of helplessness to her friend, something she never felt she could do before. “Really understanding that I am not the cause, or the cure, for this has been very helpful,” says Davis. “It doesn’t mean that I don’t care about her just as much, just that I'm learning where my limits are and to set those boundaries so I don’t get burned out again.”
*names have been changed winter 2011 / Balance 11
Family Matters By Nicole Dunsdon
When the dream must
change
Dealing with grief and mental disorders
H
e knows she goes back to bed after she kisses him and their children goodbye. He sees her tears as she turns silently back into the house. The kids see them, too. They’re quieter lately, somehow unwilling to give themselves permission to have fun, when she so obviously can’t. His wife is one of 2.6 million Canadians — eight per cent of the population — who will suffer from major depression at some point
12 Balance / winter 2011
in their lives. And while she is still physically there, her family is experiencing grief and loss for the mother and wife who has seemingly disappeared. Caregiver grief is as common in the family members of a person diagnosed with a mental disorder as it is in families with a loved one diagnosed with terminal cancer. The difference is there is no concrete loss to mourn. And the stigma associated with mental disorders often turns a family’s support network away, rather than rallying it around them. “People don’t tend to think of it as grief be-
cause no one is dead, but it is important to acknowledge that there is a grieving process for a family dealing with a mental illness,” says Ruth O’Driscoll, program manager for the CMHA’s Family Support and Education. “The person with the diagnosis is trying to figure out what this means for them, just as their family may have to mourn the loss of some of their hopes and dreams for their loved one as they adjust to a new set of circumstances.” Fred Bowen, coordinator of the Lasting Impressions program at Hull Child and Family
Family Matters
Services, works with families in which a parent has a mental disorder. He says, “Grief and loss are a large part of what families deal with,” but the natural human propensity can be to focus on logistics first, rather than acknowledge the emotions associated with a mental disorder diagnosis. O’Driscoll says this focus on researching the disorder, taking the person to medical appointments,andgettingtherightmedications and counselling is a normal initial reaction, but at some point, families need to address the emotions they are experiencing: grief, sadness, fear, confusion, anger and guilt. A manual created by the Canadian Mental Health Association for the Family Support program’s Capable Carers psycho-educational group says, “People may feel, once they understand everything there is to know about obsessive compulsive disorder, bipolar disorder, anorexia, or whatever their loved one’s illness is, they will be able to fix the problem. Unfortunately, this is not the case.” As a result, it is important to acknowledge that the experience of caregiver grief will ebb and flow. “Mental illness is cyclical. Things are good, the person can be functioning as a strong parent and then things can go downhill again,” says Bowen. “As a result, the issues of grief and loss become cyclical, too.” After a mental health issue is diagnosed, while it is hard for family members to change their dreams for their loved one and for their
family, it is important to make accommodations. “Instead of being released back into the same expectations and circumstances,” Bowen says, “the person with the diagnosis needs to make changes in their life to adjust, and their family members’ expectations need to change as well.” While grief is a natural reaction to a mental illness diagnosis, there are some tools families can use to experience that grief in a healthy, rather than destructive, way. “A lot of it is just acknowledging that there is a grieving process and that different indi-
such as those offered in the Family Support program are important. “That allows people to experience an understanding of what they are going through and the chance to sit down in groups of people and realize how common their struggles are and that they are not alone in facing them. That gives them a sense of hope.” Bowen says the Lasting Impressions program focuses on what families have going for them, rather than against them, and offers in-home support and social opportunities such as family outings and kids’ day camps
“People don’t tend to think of it as grief because no one is dead, but it is important to acknowledge that there is a grieving process for a family dealing with a mental illness.” viduals will have different reactions at different times,” says O’Driscoll. “People need to allow themselves to cry if they need to, be angry if they need to, and also allow themselves to get on with things and have a normal life without feeling guilty.” While some people who struggle with a mental disorder, like depression, do make full recoveries, family members of those with more severe and persistent problems benefit from reaching out to deal with their feelings. O’Driscoll says social programs
to bring people out of isolation and into an environment where they can share, feel understood and tap into the resources that exist in the community around them. “Talking about the hard-to-discuss topics is important,” he says. “After a mental illness diagnosis, families often experience a sense of confusion and rejection. Breaking that down through understanding and education is key. That fosters the conversations needed around the emotional side of things.”
Strategies for coping with caregiver grief
1 2 3 4
Allow time to grieve without getting angry or frustrated with yourself. Acknowledge that you don’t experience grief just for a week and that it can take a while. Seek and accept support from people who are supportive and understanding. Don’t hesitate to access professional counselling.
5 6 7 8
Write in a journal or draw to express your feelings. Engage in a hobby or activity that provides you with time for reflection and quiet thought. Take care of yourself. Treatments can be effective and many people make improvements following a diagnosis of a mental disorder. Be hopeful.
winter 2011 / Balance 13
Getting Involved
Giving back By Susan Pederson
Family Support — This program offers support, education and resources for the friends and family of those diagnosed with a mental disorder. Volunteers support and help participants who are finding their way as caregivers.
K
atherine Pederson started volunteering with CMHA’s Survivors of Suicide program (a program for those who have lost loved ones to suicide) years ago, for the same reasons that many CMHA volunteers get involved — personal experience. “I had personally experienced the loss of two people to suicide,” she says. “I received so much help from the program with something that had been such a huge negative impact on my life that, after a time, I wanted to give back.” Becoming a co-facilitator for Survivors of Suicide groups “made my life more complete and full,” she says. “I felt I was already healed, so I wanted to let others know that it is possible to get help and to have a good life, that this will not always be what they are about. They will realize that they will get their old life pretty well back. It will be a new normal.” Pederson took a break from the program a few years ago in order to keep her own life in balance, but has continued volunteering with other organizations as time — and a balanced lifestyle — allow. 14 Balance / winter 2011
Get involved with a community program If you are interested in getting involved and giving back, CMHA - Calgary Region has several programs that work with volunteers. If you’re interested in volunteering, please call CMHA’s Volunteer Coordinator at (403) 297-1713. Continuing Connections — In partnership with Alberta Health Services, this program strives to enhance quality of life for adults under the age of 65 who have a mental illness and reside in continuing care facilities. Volunteers spend time with participants and take part in a variety of activities, including bowling and art classes.
Peer Options — Aimed at helping adults with mental disorders build their social skills, volunteers have a variety of peer groups they can become involved with, including working on social anxiety and developing skills for the workplace. Peer mentoring is an important part of this program, with volunteers offering inspiration and support to individuals in the program. Suicide Bereavement — This program helps family and friends who have experienced a suicide-related loss deal with the emotions and stigma often attached to this type of death. In addition to a formal bereavement group that is co-facilitated by professional counsellors and volunteers, this program offers individual peer support, where trained volunteer survivors can provide supports to those who have recently suffered a loss by suicide. Volunteers are also welcome to get involved with Community Education and Leisure and Recreation programs through the CMHA. For more information on all of the programs, visit www.cmha.calgary.ab.ca/programs or call (403) 297-1700.
An employee might FEEL: Tired, confused, unfocused, stressed, irritable, depressed.
Management might SEE: Lack of motivation, high absenteeism, low productivity, a job vacancy!
Mental health issues affect EVERYONE. Employees, Business Operations, and the Bottom Line.
Help break the silence before it’s too late. Start the conversation on workplace mental health. Book your educational workshop today! For more information, contact the Canadian Mental Health Association - Calgary Region’s Workplace Wellness Specialist at 403.297.1410 or visit www.cmha.calgary.ab.ca
Fatigue Anxiety Despair Depression
Seasonal Affective Disorder... More than just the winter blues. Visit www.cmha.calgary.ab.ca for more information. winter 2011 / Balance 15
Mental Health for Youth w w w.gotabrain.ca