To be a family caregiver to a loved one with a serious mental illness is very challenging. Several major emotions can impact upon the caregiver as she/he looks around for support and information. These emotions could be confusion about the challenges faced by their family member and what to expect moving forward. And also hurt, rejection and misunderstanding from a sadly fragmented and inadequate mental health system when the caregiver attempts to reach out. The ongoing grief of having an adult child who has lost the future that had been hoped for and the readjustment to a different future also weigh in. Most significant is the ongoing empathy of seeing a loved one struggle each day to overcome the barriers caused by the illness and those that have been developed in our society reflected in stigma and lack of appropriate services. Each situation is different depending upon the unique challenges our loved ones face, the skill of the psychiatrist (if you are lucky to get a psychiatrist), and his or her willingness to include the family in decision making.
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 difficulties that they had no part in making.
Coping tips for families: https://mentalillnesspolicy.org/coping/coping-tips-mentally-ill.html
Books: “Family Care giving in Mental Illness” by Harriet Lefley. 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.
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
This book was read one of our members whose son has schizophrenia and she found it helpful :
Shot in the Head A Sister’s Memoir, A Brother’s Struggle
Indie Book of the Day Winner
A real life Wally Lamb – Goodreads
“enlightening and educational work!” New York Journal of Books
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
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.
The Burden of Sympathy: How Families Cope with Mental Illness
In this vivid and thoughtful study, David Karp chronicles the experiences of the family members of the mentally ill, and how they draw “boundaries of sympathy” to avoid being engulfed by the day-to-day suffering of a loved one.
Here is a research article supporting the fact that many people with mental illness value the support of their family.
Articles: Jane Milliken has written a number of articles which describe the experiences of parents of those with seriously mentally ill adult children. Here is 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
Because the ability of people with schizophrenia to achieve anticipated success and independence is compromised, many of their parents assume responsibility for protecting, nurturing, and directing care for their offspring. The emotional, social, and financial challenges of caregiving, extended beyond the usual child-rearing duration, are complicated by the societal designation of their children as adults. Decisions about caregiving involve many practical and moral dilemmas. In this article, we examine several dilemmas encountered by parents who try to fulfill their perceived responsibility to care for adult children with schizophrenia. After exploring the related concept of moral agency, we close with some reflections on the assumptions surrounding psychiatric care and parental responsibility.
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:
- 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.
Family intervention, same tactics as above but with whole family or available members, or a specific family member with influence.
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.
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.
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….
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.
- 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.
- 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.
- Calm, soothing words
- Safe environment (could mean outside, large room, hallway)
- Low stimulus
- Parallel sitting
- Instruction to breathe, focus, relax
- Routines of coffee, tissue
Here is a link to a recent Globe and Mail article to describe how the current mental health system can improve by Dr. David Goldbloom and Dr. David Gratzer.
David Goldbloom is a psychiatrist, senior medical adviser at CAMH, and former chair of the Mental Health Commission of Canada. David Gratzer is a psychiatrist at the Scarborough and Rouge Hospital.
For those wishing information on Bipolar Disorder, please see Dr. Sethna’s video presentation under the Robert Veltheer Lecture Series.
Susan Inman’s Presentation “What families need from the mental health system”. Susan gave this talk on Monday, June 20/2016 at the Richmond Hill Centre for Performing Arts. Please see the video under Robert Veltheer Lecture Series.
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: http://www.omh.ny.gov/omhweb/cogdys_manual/CogDysHndbk.pdf …
Dr. Rus Sethna’s Lecture presented in November, 2015 on Psychotic Illnesses:
Home on the Hill Newsletters
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.
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Canada’s Homelessness Partnering Strategy: http://www.hrsdc.gc.ca//
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/
Raising the Roof: http://www.raisingtheroof.org/
Recreational Respite: http://recrespite.com/
Toronto Community Housing: http://www.torontohousing.ca/
Wellesley Institute: http://www.wellesleyinstitute.com/