CAREGIVER RESOURCES

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-10 years-

CAREGIVERS WITH

LIVED EXPERIENCE

A safe community to share, feel validated and get stronger together.

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To improve mental illness literacy 

by BCSS CEO Faydra Aldridge. 

The most recent podcast episode, “Hearing Voices,”  features psychiatrist,

Dr. Randall White describing common symptoms of psychotic disorders in general and schizophrenia in particular. 

 Mental Illness Resource List 

by Pathways Serious Mental Health Society 

A resource list for families which is courtesy of Pathways, a family helping families organization in North Vancouver: This list gives the reader information about serious mental illness.

Anosognosia Training

 by LEAP Foundation 

Dedicated to serving family caregivers of persons with serious mental illness (SMI). Dr. Xavier Amador leads the LEAP sessions. The book is helpful to those who support a loved one with a serious mental illness.

I Am Not Sick, I Don’t Need Help!

by E. Fuller Torrey, M.D

“This book fills a tremendous void” about the first edition of I AM NOT SICK, I Don’t Need Help! In this edition of Dr. Amador’s best-selling book, 6 new chapters have been added, new research on anosognosia (lack of insight) is presented, and new advice is offered from lessons learned from thousands of LEAP seminar participants. Learn why so many people with serious mental illness are in “denial” and refuse treatment

CAREGIVER DISSCUSSIONS

The following information has been placed here to help family caregivers gain a perspective on their situation and learn strategies to cope and to help them realize that they are not alone in facing the challenges of supporting a loved one with serious mental illness.

Mental Health Act of Ontario

Misuse of the law regarding privacy may be reported to the Information and Privacy Commissioner of Ontario. https://www.ipc.on.ca/privacy-individuals/filing-a-privacy-complaint/

One example of a questionable use of privacy legislation is when an agency did not respond to a family caregiver’s phone calls when the family member could not be located and was possibly in imminent physical danger.  She was told later by the agency that the family member had stated, unbeknownst to the family caregiver, that “no information was to be shared without his presence” and that was the reason that they had not returned her calls.  This actual case later was discussed with a former Privacy Commissioner who suggested that a complaint could be filed.  Misuse and different interpretations of confidentiality laws have unfortunately been a reality that families have faced for decades. Families can perceive that citing privacy can be a means of evading accountability. Please see “clinician deficits” in chart below developed by Harriet Lefley which cites misuse of confidentiality as a factor causing stress.

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Sharing Information with Families that Carry the Burden of Care for Relatives with Severe Mental Illness PDF.

by R. O’Reilly MB FRCPC, J.E. Gray PhD CPsych & J. Jung BSc (Department of Psychiatry at Western University)

Most individuals suffering from severe and persistent
mental illness, who are unable to live independently, are
cared for by their families. These families provide both
support and clinical services for their ill relatives. Families
complain that the clinicians involved in their relatives’
care frequently fail to provide information needed for the
family to safely and eff ectively fulfi ll their responsibilities.
Clinicians usually respond that their ability to divulge
information is constrained by privacy legislation. This is
true, but we suggest that clinicians have a duty to their
patients’ relatives, and that clinicians regularly fail to take
available practical and legal steps to ensure that families
receive the information that they need.

Family Challenges in Mental Health System

by Dr. David Dawson, psychiatrist & 

Marvin Ross, writer, publisher and father

They touch on the challenges which families have experienced withing the current mental health system.  These articles are re-printed here with the explicit permission of Bridgeross.com.

Hospital Employees

 Family Caregiving in Mental Illness (Family Experience Book)

by Harriet P. Lefley 

 First published in 1996 and is from the States,  the experience of families that is described is still relevant today in Canada.  Reading this book allows the reader to appreciate that her/his experience has all been covered before and that they are not alone.  The treatment of families of those with serious mental illness has been well documented in the literature.  Please see below for a chart developed by Harriet Lefley in 1990 documenting the sources of stress for those family caregivers supporting a loved one with mental illness.

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Experiences of Parents of Seriously Mental Ill Adult Children

PARENTS AS CAREGIVERS FOR CHILDREN WITH SCHIZOPHRENIA: MORAL DILEMMAS AND MORAL AGENCY P. Jane Milliken, RN, PhD Patricia A. Rodney, RN, PhD University of Victoria, Victoria, British Columbia, Canada

“Who Believes Most in Me and in My Recovery”: The Importance of Families for Persons With Serious Mental Illness Living in Structured Community Housing

by Myra Piat., et al. Journal of Social Work Disability Rehabilitation

In this article, the authors report on qualitative findings on the role of family in supporting recovery for mental health consumers living in structured, community housing in a large Canadian city. Despite living separately from families and relying heavily on formal services, residents identified their families more often than mental health professionals, friends, and residential caregivers as those who most believe in them and their recovery. Families supported recovery by providing affection and belonging, offering emotional and instrumental support, and by staying actively involved with residents. Families are a vital, untapped resource for social workers in promoting independent living.

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Strategies in how to cope with your family member who is living with mental illness

by Dr. David Laing Dawson

Anosognosia is an unwieldy word meaning lack of insight, or, literally in translation, `without- disease- knowledge`.  In the case of some brain injuries or stroke, the brain may become quite specifically unaware of what is missing. The part of the brain that would perceive this is damaged. With mental illness, schizophrenia, bipolar, the apparent lack of insight or denial of obvious impairment or implausible grandiosity may be more nuanced and variable.

De-escalation and Crisis Intervention Principles 

by Dr. David Dawson for Home on the Hill De-escalation Training 

This means monitoring boundaries: physical, interpersonal and, emotional boundaries. You have presented yourself as non-threatening, as empathic, as honest, as calm, sane, receptive.

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BOOKS

Read the struggles, resilience, support, and resources available below: 

Shot in the Head A Sister’s Memoir, A Brother’s Struggle

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After Her Brain Broke: Helping My Daughter Recovery Her Sanity

Resources for Psychosis

Materials, websites, and presentations

Dealing with Psychosis: A Toolkit for Moving Forward with Your Life

website by HeretoHelp

The relationship between Marijuana and Psychosis

Presentation by Dr. Amir Barsoum

Schizophrenia & Psychotic Illness 

Presentation by Dr. Rus Sethna's Lecture 

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    Mar 26, 2021
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