Caregiver Resources


 

 

 

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.

http://pathwayssmi.org/information/books-resources/

 

 

For information about anosognosia training you may want to contact the LEAP Foundation at lfrp.org

The LEAP Foundation is is a non-profit organization dedicated to serving family caregivers of persons with serious mental illness (SMI).  Several Home on the Hill family caregivers have taken the training and found it very helpful.   Please see the testimonial below:
Here is the the book by Dr.Xavier Amador who leads the LEAP sessions. The book is helpful to those who support a loved on with a serious mental illnesss.

I Am Not Sick, I Don't Need Help CoverI Am Not Sick, I Don’t Need Help!

“This book fills a tremendous void…” wrote E. Fuller Torrey, M.D., about the first edition of I AM NOT SICK, I Don’t Need Help! Ten years later, it still does. In this new 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. You will learn why so many people with serious mental illness are in “denial” and refuse treatment. Whether you are a health care professional, family member, friend or law enforcement professional, you will learn how to build trust and succeed at helping someone with mental illness to accept treatment and services. I AM NOT SICK, I Don’t Need Help! is a must-read guide.

 

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Any comments regarding the Mental Health System may be addressed to Associate Minister of Mental Health and Addictions, Michael Tibollo. See staff list below.

Please note that Gilbert Sharpe who developed the Mental Health Act also works in this office.  Messages to him can be sent through Kara Johnson listed below. If you wish to arrange a meeting with the Minister Tibollo, contact Kara Johnson.

 

Allan R. MacDermid |

Chief of Staff
Office of the Hon. Michael Tibollo
Associate Minister of Mental Health and Addictions
99 Wellesley Street W, Whitney Block, Room 1618 | Toronto Ontario, M7A 1A2
(437) 242-7081

Allan.Macdermid@ontario.ca

 

Kara Johnson

Director of Stakeholder Relations

Office of the Honourable Michael Tibollo

Associate Minister of Mental Health and Addictions

Room 1618, 1st Floor, Whitney Block, 99 Wellesley St. W.,

Toronto, ON  M7A 1A2

(437) 213-9526

kara.johnson@ontario.ca

 

Brett Weltman

Director of Communications
Office of the Hon. Michael Tibollo, Associate Minister of Mental Health and Addictions
Ontario Ministry of Health

T: 416-627-3266

Brett.Weltman@ontario.ca”FOR THE PEOPLE”

 

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BELOW ARE PICTURES OF A PRESENTATION, DISCUSSIONS AND INFORMATION SHARING WITH FAMILY CAREGIVERS.

 

 

 

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.

 

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This is a link to the current Mental Health Act of Ontario:  https://www.ontario.ca/laws/statute/90m07#BK31

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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This article first published in Journal of Ethics in Mental Health illustrates the difficulty that families have in trying to get the information that they need to support their family member:

https://jemh.ca/issues/v9/documents/JEMH_Open-Volume_Frontline_Perspectives_Sharing_Information-November20-2015.pdf

Sharing Information with Families that Carry the
Burden of Care for Relatives with Severe Mental
Illness
R. O’Reilly MB FRCPC
Professor, Department of Psychiatry, Faculty of Medicine,
Western University, London, Ontario, Canada
J.E. Gray PhD CPsych
Adjunct Professor, Department of Psychiatry, Faculty of Medicine,
Western University, London, Ontario, Canada
J. Jung BSc (student)
Faculty of Science, Western University, London, Ontario, Canada

 

Abstract 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.

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The following articles are written by Dr. David Dawson, a psychiatrist, and 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.

 

Books By Professionals about the Family Experience:

 “Family Care giving in Mental Illness” by Harriet Lefley.

https://us.sagepub.com/en-us/nam/family-caregiving-in-mental-illness/book5435

Even though this book was 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.

 Sources of Stress for Family Caregivers
Lefley Sources of Stress

 

 

 

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Articles: Jane Milliken has written a number of articles which describe the experiences of parents of those with seriously mentally ill adult children.  Here are one article:

Issues in Mental Health Nursing, 24:757–773, 2003 Copyright c Taylor & Francis Inc. ISSN: 0161-2840 print / 1096-4673 online DOI: 10.1080/01612840390228031

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

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Here is a research article supporting the fact that many people with mental illness value the support of their family.

J Soc Work Disabil Rehabil. Author manuscript; available in PMC 2016 Apr 18.
Published in final edited form as:
J Soc Work Disabil Rehabil. 2011; 10(1): 49–65.
“Who believes most in me and in my recovery”: The importance of Families for persons with serioous mental illness living in structure community housing: Myra Piat, Judith Sabetti, Mariae=Josee Fleury, Richard Boyer, and Alain Lesage.
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Strategies in how to cope with your family member who is living with mental illness:

By Dr David Laing Dawson

posted with permission from the blog Mind You by Dr David Laing Dawson and Marvin Ross

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. It may be part defensive in nature; it may be more a denial of the consequences imagined; it may be more about the power relationship at hand. Some of it may be merely human, the unwillingness to give up a longstanding belief, whether that be of the second coming,  CIA surveillance and persecution, or of being chosen, special, destined for greatness.  Some of it may be a distorted form of the normally complex parent – adult child relationship.

But almost every family with a severely mentally ill member must deal with, at least once, that time when the ill member claims to be fine when obviously not, and refuses to take medication or go for an appointment to the doctor.

How to approach this. What options do you have. Below is an outline for talks I have given on the subject:

Stage 1

  • Calm and slow
  • Non-threatening (posture, position (e.g. side by side), distance, tone, pace)
  • Aim for a negotiated reality. (not the acceptance of your reality)
  • i.e. He may not be willing to admit he is ill or delusional or needs medication but may be willing to agree that he is in trouble, anxious, not well, in pain, not sleeping, and that in the past the pills have helped with that. He may by his behavior be willing to take pills or come for an appointment as long as he doesn’t have to admit to need or illness.
  • Gently find out what he or she fears.
  • Gently find out what his objections are.
  • Allay these objections and seek a “negotiated reality”.
  • Stay away from labels, declarations, and you defining his reality.
  • Offer pill with glass of water without saying anything.

Stage 2

Family intervention, same tactics as above but with whole family or available members, or a specific family member with influence.

Stage 3

Ultimatums. (You can`t live here unless…..)

But before doing this you should assess the level of risk (provoking violence, and/or leaving and putting self at risk). Discuss in family plus with a professional. Must also assess realistically your tolerance for confrontation, anxiety, worry, guilt. And ultimatums are only effective if truly meant, if you are truly willing to carry through with the ultimatum. If the ultimatum works, do not reiterate it unnecessarily.

Stage 4.

Form 1, J.P., Court order, Police intervention.

Before doing this decide on desired outcome, assess odds of achieving this desired outcome as best as possible (i.e. is there a treatment that works? Will they keep him or her long enough? Does the trauma of this kind of intervention justify the long-term outcome?)

Having decided on desired outcome, use all resources to achieve this. Learn the wording of the Mental Health act to get desired outcome. Use this wording to your advantage. Find family mental health friendly lawyer. Discuss with the health professionals who will be receiving the family member.


De-escalation and Crisis Intervention Principles.

By Dr. David Dawson for Home on the Hill De-escalation Training Nov 8 2017

A prerequisite for crisis intervention is that at least one person not be in crisis.

Someone needs to take the lead and be the only communicator. That someone must be calm and focused. To achieve this one needs to take a minute or five minutes to dispel all other preoccupations, to call home, to cancel other appointments, to clear the mind. This includes clearing the mind of prejudice, assumptions, and personal needs.

Things can be replaced.

Never intervene to protect property. If property is being destroyed wait until the man or woman has finished, is spent, has quieted. All property can be replaced. Your eye and his eye cannot.

True emergencies requiring immediate action are rare.

Slow down. The only time speed is required and time is important is on the rare occasion when one person is actually harming another. Not threatening. Actually harming now. Words are just words. This includes threat to jump or hurt oneself.

Time is on your side.

Slow down. There is no hurry. This may take all day. A good outcome is far more important than a speedy conclusion. Learn to ignore the pressures to intervene, to “get this over with.” These pressures come from inside, from supervisors, from colleagues, from bystanders. Ignore them. Accept that this may take a while.

There are rhythms and patterns to emotions.

Slow down. A man in a rage will eventually sate his rage. He will have moments of calm, of anxiety, of despair. Emotions wax and wane. Anger eventually dissipates unless repeatedly provoked.

Aggression is (almost always) a response to fear.

  • Do not do or say anything that might be perceived as threatening.

This means monitoring boundaries: physical, interpersonal and emotional boundaries.

  • Do not intrude on his or her space.
  • Maintain a pleasant, non-threatening, but also not excessively expressive face and tone of voice. Maintain a neutral, patient, mildly empathic demeanor. Do not use the overly empathic and falsely understanding tone seen on good cop routines on television. This will trigger suspicion and fear.
  • Do not touch. Do not gesture or reach out. Speak calmly and slowly. Move slowly.
  • Use few words. Listen.
  • Address this person formally. If you know the person’s name use Mr. Mrs. or Miss and the last name. That means even if the ward nurses have been in the habit of calling this man Joe, he is now Mr. She is now Miss or Mrs. If you do not know the person’s name he is now “Sir” and she is “Ma’am.”
  • Introduce yourself with full name and title or job.
  • Ask permission before doing anything, or moving. Wait for permission before moving, before entering a room, before sitting.
  • Never block the door or his escape route with your body. If permission is granted to enter a room (seclusion room, bedroom, front door of house, or other room) enter and move to the side.
  • Keep your distance. Large men should always sit on the floor or a chair if possible.
  • If possible sit so you can converse in parallel fashion, e.g. side by side, rather than face to face.
  • Women may ask if it is all right to bring in a chair. Always sit away from the door.
  • Exercise stillness.
  • If opportunity arises feel free to talk with the person about anything he wishes or is willing to talk about. It needn’t be about the actual situation.
  • Be meticulously honest in your responses.
  • Pay close attention to your own emotional responses.
  • Do not argue with a delusion.
  • Do not argue, period.
  • Listen to the non-textual communication. Ignore verbal threats, denials, and refusals.
  • But if you see increased agitation ask the person if he would like you to back up, stop talking, leave room, fetch a coffee….

Your Goal

Each situation and context defines your goal. It may be to have this man go peacefully with the police officers, or walk with you back to the ward, or walk with you back to a bedroom and to take a pill, or to assess for safety and be allowed to leave or not. He will know and understand your goal. You do not have to verbally insist upon it or even speak it. Ignore verbal refusals. Do not argue or give choices.

You have presented yourself as non-threatening, as empathic, as honest, as calm, sane, receptive. You have listened. At some point you will see by his demeanor, by his non-verbal communication, by his body posture, his facial expression, that he may now be receptive to your goal. At this time you may verbalize your goal, but quietly, not forcefully, and not in a way that implies anything but choice on his part. If you want him to take medication this can now be offered without words spoken.

……..

A show of force and an authoritative command may work well when the subject for this is relatively calm and sane, and interpreting external information in a rational manner. It is often ineffective when the target is mentally ill, not interpreting information rationally, and it may exacerbate the situation.

Psychotic and paranoid (delusional)

  • Don’t argue with a delusion
  • You may be perceived as a foe, part of the delusion
  • Apart from all the general principles, you may achieve the goal (go to hospital etc) by not directly saying or implying that the subject is ill, crazy, or mental.
  • You may be able to interpret upward, meaning without colluding with the delusion, empathize with the feeling and general implications, and be perceived as an ally.
  • Be very careful with physical and emotional boundaries.

Manic

  • This person may feel invulnerable, powerful, and even immortal. He will be talking quickly. He may want to get his message to the world. Again the goal (take a medication, go to hospital, back to a ward) may be achieved by physically in timely manner offering these without overtly stating the need or the reason.
  • Use few words. Do not argue.
  • Be very careful with physical and emotional boundaries.
  • Walk with, parallel conversation.

Dementia

  • Provide security without threat.
  • Be prepared to repeat over and over what the situation is.
  • Provide orientation (I am, you are, you’re here, this is…..)
  • Do not react to the lewd and crude
  • Help with a physical task (let me get that for you)
  • Touch may be welcome, gentle arm touch eg.
  • May be able to distract with activities that are routine.

Anxiety/Panic

  • Calm, soothing words
  • Safe environment (could mean outside, large room, hallway)
  • Low stimulus
  • Parallel sitting
  • Instruction to breathe, focus, relax
  • Routines of coffee, tissue

Books By Family Caregivers:

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

Shot In The Head

 

A bittersweet memoir about life and loss. When her mentally ill brother developed lung cancer, author Katherine Flannery Dering had to overcome her reluctance to deal with the troubled man and step up to help in his care. While maneuvering through the maze of our mental health system, she (and her eight siblings) got to know social workers and the employees of nursing homes on a first name basis, saw friends and family less often, missed work, and ate fewer meals at home and more fast food.  Along the way, she changed in unforeseen ways, and her perception of her ill brother, Paul, changed as well.

“Dering unspools her story with urgent compassion and grace.” Elizabeth Eslami, author of Bone Worship and Hibernate and the 2013 winner of the Ohio State University Prize in Short Fiction

“So powerful and emotional” – Ann Cloonan, Director, Bedford Free Library, Bedford, NY

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After Her Brain Broke: Helping My Daughter Recovery Her Sanity

After Her Brain Broke: Helping My Daughter Recover Her Sanity

This book chronicles the journey of a mother’s experiences as her daughter becomes ill with serious mental illness.

(A Must have book on Schizophrenia Healthy Place)

Susan Inman’s memoir describes her family’s nine year journey to help her younger daughter recover from a catastrophic schizoaffective disorder.  “…one of the best accounts I have read of serious mental illness as told by a mother.” and “Highly  recommended” E. Fuller Torrey, MD author of Surviving Schizophrenia.

Recommended by NAMI in the US, EUFAMI in Europe and The Mood Disorders Society of Canada. With an introduction by former Senator Michael Kirby, Chair Emeritus, Mental Health Commission of Canada.

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For resources regarding psychosis:

http://www.heretohelp.bc.ca/workbook/dealing-with-psychosis-a-toolkit-for-moving-forward-with-your-life

Find out more about cognitive dysfunction related to psychotic illnesses:

publication

Presentations:

The Relationship Between Marijuana and Psychosis – ppt

The Relationship Between Marijuana and Psychosis – ppt

Dr. Rus Sethna’s Lecture presented in November, 2015 on Psychotic Illnesses:

Schizophrenia & Psychotic Illness Presentation – Nov 26 (1)

Home on the Hill Newsletters

February 2018 Newsletter

August 2017 Newsletter

November 2015 Newsletter

March 2015 Newsletter

September 2014 Newsletter

April 2014 newsletter

The Mental Health Commission released its Guidelines for Family Caregivers in June 2013. Let us hope that Guidelines get implemented.

Home on the Hill released its Needs Assessment (Final) document (pdf) in April 2012.

Home on the Hill on Facebook: HomeOnTheHillSupportiveHousing

Home on the Hill on Twitter: @homeonthehill1

Canada’s Homelessness Partnering Strategy: http://www.hrsdc.gc.ca//homelessness/

Canadian Homelessness Research Network: http://homelessresearch.net/

Canadian Mental Health Association: http://ontario.cmha.ca/

Centre for Addiction and Mental Health: http://www.camh.ca/

City of Toronto, Shelter, Support and Housing Administration: http://www.toronto.ca/housing/

Homeless Nation: http://homelessnation.org/

Homelessness Hub: http://www.homelesshub.ca/

Housing Services Corporation: http://www.hscorp.ca/

Jackson Therapeutic Recreation: http://www.jacksonservices.ca/

Ontario Human Rights Commission: http://www.ohrc.on.ca/

Ontario Ministry of Health and Long-Term Care: http://www.health.gov.on.ca/

Ontario Ministry of Municipal Affairs and Housing: http://www.mah.gov.on.ca/

Psychiatric Patient Advocate Office: http://www.sse.gov.on.ca/mohltc/ppao/

Raising the Roof: http://www.raisingtheroof.org/

Recreational Respite: http://recrespite.com/

FACT SHEET: What Causes Schizophrenia? (pdf)
Dr. Patricia Boksa, Professor, Department of Psychiatry at McGill University, Montreal, Quebec

Toronto Community Housing: http://www.torontohousing.ca/

Wellesley Institute: http://www.wellesleyinstitute.com/