The Family as Caregivers
Knowing the System
Taking Care of Yourself
Problems, Complaints and Grievances
If a Family Member Refuses Treatment
Legal Services / Legal Aid
The Public Curator
Family Associations in and around Montreal
The Family as Caregivers
The family of a person with mental illness must often weather problem situations and events that can be somewhat dramatic. The family needs to be directed and supported. The information on the following pages will assist you in coping with mental illness and helping your ill relative, while maintaining as much normalcy as you can within your family.
As part of the shift toward a more balanced healthcare system, there is growing recognition of the role of families as primary caregivers or partners in care in both the hospital and the community. This is a welcome change of attitude. Families are generally deeply involved with their ill relative, but their insights and particular needs have often been overlooked. At one time professionals tended to blame the family for the person’s becoming ill. Today more and more professionals realize the importance of building a healthy link with family caregivers.
Relatives have the right to ask questions. It is important to build a partnership with at least one professional member of the team in order to have these questions answered. Learn all you can about the illness. The patient may refuse to allow professionals to disclose information due to his state of mind. Nevertheless the family may request general information on the illness. It may be helpful to ask the following questions:
- What is the diagnosis?
- What is the treatment plan?
- Which symptoms are you most concerned about?
- What do they indicate?
- How are you monitoring them?
- What medication is the person getting?
- Is the response what was hoped for?
- Which side effects should be watched for?
- Has the team discussed with the person the diagnosis, medications, their side effects and the treatment plan?
- How often can we meet to discuss progress?
- What is the discharge plan?
- Will this plan ensure that the person can maintain stability in the community?
- How can I be of help to assure a team effort?
Remember: The attitude of the ill person determines the level of family involvement. Family members need to understand how their behaviour toward their relative can either be supportive or detrimental. If there has been a sufficient exchange of information between the hospital and the family by the time the person is ready for discharge, this will be made clear. The family will know what to watch for, how to respond and how to effectively facilitate quality care by professionals. There must be continued contact between the professional team and the family members for an optimum outcome.
To help your ill relative, consider these suggestions:
- Try to accept the person as he is. Praise him for his courage in dealing with the illness. Try to imagine how frightening it must be.
- Tailor your expectations. Unrealistic expectations may mean a high stress level for your relative, which can be very detrimental. By trial and error and with good rehabilitation programs he will be able to modify his own expectations and get on with his life with a sense of dignity.
- Avoid placing blame and guilt.
- Be honest. Your relative needs to know that you can be trusted. It is crucial that you treat him with dignity and respect. Consult him about everything you plan to do. He may disapprove of your intended action or may wish to handle matters differently. Your actions must inspire confidence.
- Do “normal” things in the house. The illness must not be the central governing force. Allow your relative some “space.”
- Set limits. The rules of the house must be the same for everyone.
- Establish boundaries. If you sacrifice your life and do too much for your relative, it could make things worse, and you risk getting sick. The more responsibility an affected person assumes for himself and the more you distance yourself from moment-to-moment involvement, the better. The less responsibility he assumes, the more entangled you become as you take on the burdens of the illness.
- If your relative is seeing, hearing or feeling things that are not real, do not argue,
deny or try to reason at this time.
- Be alert to early warning signs: changes in sleep or social activities, increased hostility or suspiciousness may be signals that your ill family member is relapsing.
Try to get him to seek professional help.
Knowing the System
Families must know how to be effective in getting help for a seriously ill relative. They need to know what questions to ask, whom to see, and especially where to go when they feel overwhelmed and discouraged.
- Focus on finding one professional on the hospital team you can count on to provide or receive information concerning your relative.
- Do not accept vague answers or confusing statements. Ask for clarification or an explanation of anything you do not understand. If you are not satisfied, you may
ask for a second opinion.
- If your relative is 18 years or over, you will need his written permission to review documents. In some situations your relative may grant only partial permission for you to obtain information such as medication prescribed or the treatment plan.
- Treat your relative with dignity and respect. Consult him about everything that you plan to do. Your actions must inspire confidence.
- Keep careful up-to-date records. List names, phone numbers, dates and circumstances of crisis events, admissions to hospitals and dates of discharge. Make notes of consultations and conferences. Keep copies of correspondence.
- Write letters of criticism where necessary. Send these to the hospital or agency director with copies to anyone else who may be involved. Send letters to local provincial representatives if there is no response. Write letters of appreciation when warranted.
- Be assertive. You are paying for health services either directly or through taxes. You are entitled to information, respect and courtesy. You are not asking for favours; you are simply helping your relative recover.
- Lobby your legislators for mental health services.
Suggestions for coping with a mentally ill family member after hospitalization:
- Try to work out a plan with the therapist or treatment team when the person is at his best. If possible, determine what led to hospitalization and agree on a course of action if acute symptoms reappear.
- Learn to recognize signs of relapse such as changes in sleeping or eating habits, withdrawal or sudden mood swings. A visit to the psychiatrist may help prevent a full-blown relapse, particularly when an adjustment of medications is needed.
- If you feel you cannot cope with a certain situation (aggressiveness, suicidal ideas), do not hesitate to consult a mental health professional or organization.
- Anticipate troublesome situations. If you know someone who cannot handle the relationship, do not extend an invitation when your ill family member is present.
- Do not agree to stop medications because the condition is “cured” or because the drug “makes me feel sick.” Refer these decisions to the treating team.
- Avoid pampering. Set reasonable rules and limits and stick to them. If you find this difficult, ask your relative’s doctor, a counsellor or a support group for help.
- Do not suggest that the affected person “pull himself together.” The illness makes that impossible. Remember that your relative’s suffering and distress are even greater than yours.
- Do not insist that all peculiar habits be corrected at once. Focus on what is accomplished, not what is undone.
- At times a mentally ill person suffers from memory loss or inability to concentrate. This is frustrating and frightening. Do not insist that he try harder. Just repeat the information in a non-judgmental way.
- Do not fall in with delusional thinking. A person having mental health problems needs to be able to depend on someone who is objective and aware of what is really happening. On the other hand, do not argue or try to point out faulty logic.
- Your family member may hallucinate and see, feel, hear or otherwise perceive things not perceived by others. Be honest. Accept the perceptions. If asked, simply point out that you are not experiencing the hallucination. Discuss the hallucinations with the psychiatrist.
- Overly critical communication should be kept to a minimum as it can provoke unnecessary stress on the ill person.
- If re-hospitalization is required, promptly advise the Psychiatric Emergency of your relative’s hospital.
Taking Care of Yourself
Those close to someone ill may become so involved in care giving and so overwhelmed that they allow the quality of their own lives to deteriorate.
Realizing the person is ill does not always overcome the hurt, anger, frustration or dismay felt by relatives and close friends. Guilt is also a common feeling even though the family did not cause the illness. Remember that mental illness is a “no-fault” disease.
These suggestions will help you better care for yourself and your family:
- Think of joining a self-help group for families and relatives. You need the support of those who really understand your ordeal, especially when you feel like isolating yourself from the rest of the world. Some family associations also offer special meetings for brothers, sisters and adult children of the mentally ill.
- Seek the support, understanding and relief you need. You must keep yourself healthy and able to cope because you are often the one who pursues the needed services for your loved one.
- Don’t let guilt feelings keep you from your outside interests. Schedule time for yourself. Exercise, rest and eat well. Remember – there is more to life than mental illness.
- If you live as a couple, it is important to talk over the situation. Allow yourselves some precious time to develop your relationship. Learn to see that each of you is coping in the best way you know how. Be gentle on yourself and on each other.
- Sometimes a weekend away can do wonders. Respite care is available so that you can have some time to yourself.
- Do not neglect other loved ones, especially children, who may be feeling left out.
- Remember that other family members are also affected and they may also be experiencing denial, guilt and depression. Keep communication open by talking with them about these feelings.
- Maintain a support system even when things are going well.
- Do not be afraid or ashamed to acknowledge that you are the relative of a mentally ill person. This is the first step in removing the stigma attached to mental illness.
Problems, Complaints and Grievances
Users of health and social services are often unaware of their rights. Mentally ill people have the right to access their medical record, information on available resources and services, information regarding their state of health and the risks and consequences of a variety of treatment options. They are also entitled to receive services in either official language, either in a nearby institution or one listed in the Access Plan of their Régie Régionale.
In addition, they have the right to adequate and ongoing services tailored to their needs, the right to a choice of healthcare professional(s) and the establishment providing those services, the right to participate in decisions regarding their treatment, the right to accept or refuse treatment, the right to emergency care, assistance and accompaniment in obtaining information or services. They are also entitled to file a complaint.
Family members are often surprised to learn that because of concerns of confidentiality and refusal of consent on the part of their ill relative, they are given very little information. It is important to know that as a principle caregiver you do have certain rights. First, you have the right to lobby, to ensure that your relative receives any information, care or services listed above. If he does not, you have the right to lodge a complaint.
While confidentiality may limit the information professionals pass on to caregivers, you do have the right to present facts you feel are important for treating your relative. If you think you have not been given the opportunity to provide this information, you have the right to lodge a complaint. Feel free to speak to someone from your family association.
Anyone wanting to lodge a specific complaint or grievance may take the following steps:
- Discuss the problem with the treatment team leader.
- If the situation is not resolved, complain, preferably in writing, to the ombudsperson at the institution. Every hospital has an ombudsperson who is responsible for handling user problems in an impartial way.
- Should you require assistance in filing your complaint, or wish accompaniment during the process, you may contact CAAP Montréal (Centre d’assistance et d’accompagnement aux plaintes) at 514-524-0607. CAAP is an independent organization offering help with complaints concerning health and social services.
Should your problem concerning access to services or healthcare received not be satisfactorily resolved, people in the Montreal region can call Service d’aide à la clientèle of the Régie Régionale at 514-286-5615. In the Laval region call 450-978-2000. Calls from other regions should be directed to the local Régie.
The Régies represent the Ministry of Health and Social Services at the local level. Their client services aim at promoting people’s rights and needs in matters of health and social services. They also ensure that institutions and community organizations subsidized by public funds respect users’ rights and needs in compliance with the law.
If you disagree with the Régie’s findings, the decision can be submitted to the Complaints Commissioner, who is designated by the government to examine such issues. If the problem concerns a lack of resources or a reduction of available beds, complaints can be made to your MNA or to the Ministry of Health and Social Services.
If a Family Member Refuses Treatment
Even if treatment is refused, it is very important that family members have access to information and support services.
Those who refuse treatment may not be known to community or institutional organizations, or their file could be closed. In this case, it will be more difficult for you to receive information or services that could help your relative and minimize the undesirable effects of the illness. You can receive support and information from a family association in your area.
Legal Services / Legal Aid
It is occasionally necessary for families to seek legal advice. Common topics of concern are: family law (protection of mental patients), health law, juvenile law, criminal law, wills and estates, landlord/tenant rights, employment law and the right to employment insurance or welfare.
Legal Aid offers free lawyer or notary services to people with low incomes. To find the Legal Aid office in your sector, call 514-864-2111.
If you live in Montreal and are ineligibile for this service, contact the Barreau de Montréal at 514-866-2490. The name of a lawyer will be supplied; you will be charged $30.00 for a half-hour consultation. If you live in Laval, call 450-686-2958 or L’En-Droit de Laval at 450-668-1058.
You may also contact the Chambre des notaires at 514-879-1793.
McGill University Law students run a free public legal information clinic. They can provide information on many issues, but no legal advice. The clinic is open 9-12 and 1-5, Monday through Friday. Call 514-398-6792.
Please consult our resource list HERE for more legal resources.
The Public Curator
There are times a mentally ill individual can benefit from the services of the Public Curator. For instance, if the responsible family members are in ill health or too old to deal with their relative’s affairs and property; or if the family is too divided on the issue of care. In such cases, the court can appoint the Public Curator as legal representative.
In 1990, Quebec established Bill 145, the Public Curator Act. Under this new law, the inability of an adult to care for himself or administer his property may be caused either by illness, deficiency or debility due to age which impairs his mental faculties or his physical ability to express his will (Civil Code, Art. 258 par. 1). This wording is sufficiently broad to cover a host of diverse situations, including mental illness, that disable a person and justify some form of protection.
The Act equally allows all persons of sound judgment to name a mandatary in writing in the event of a future incapacity. The mandatary would make decisions for the affected person regarding his personal affairs and/or his property. The person preparing the mandate can thus express his wishes and have them respected should he become unable to do so.
Apart from this mandate, there are three distinct forms of protective supervision:
· An advisor to a person of full age: Assists and advises the person in the administration of his property. This represents the most moderate form of supervision since the person of full age is generally capable of managing his own affairs. Only a private representative can assume this position.
· Tutorship to a person and/or his property: Provides for a person who is partially or temporarily unable to manage for himself. Whether public or private, the tutor has the task of ensuring the moral and/or material well-being of the protected person of full age. The person’s condition, needs, faculties and all other pertinent factors should be taken into consideration.
· Curatorship to the person and to property: Reserved for a person totally and permanently unable to take care of himself and administer his property. The curator has full administrative powers over the property belonging to the protected person of full age. This type of protection is reserved for the most serious cases of inability. A private representative or the Public Curator can assume this position.
These forms of supervision strive to protect the person and/or the administration of his property. They also protect the person’s need to exercise his civil rights while taking into account his level of inability. They are subject to an obligatory periodic reassessment as provided by the law or determined by the courts.
Only the courts can authorize a mandate or protective supervision. To do so, they must assess the person’s level of inability to determine which level of supervision is best. Further information may be obtained from:
The Office of the Public Curator
600 René-Lévesque Blvd. West, 10th floor
Montreal, Quebec H3B 4W8
514-873-4074 or 1-800-363-9020
These associations in Montreal and Laval comprise parents and friends of people with mental health problems. They offer support and guidance to ensure that families and their ill relatives receive personalized, quality care. Family associations promote the rights of the mentally ill and fight discrimination and stigma through education and empowerment. To prevent burnout often caused by the strain of caregiving, many family associations also offer respite through a variety of programs.
Association québécoise des parents et amis de la personne atteinte de maladie mentale (AQPAMM)
1260 Ste-Catherine Street East, Suite 202A
Montreal, Quebec H2L 2H2
AMI-Québec Action on Mental Illness
6875 Décarie Blvd., Suite 300
Montreal, Quebec H3W 3E4
Association des parents et amis de l’hôpital Rivière-des-Prairies
7070 Perras Blvd
Montreal, Quebec H1E 1A4
Tel. 514-323-7260, ext. 2215
Société québécoise de la schizophrénie (SQS)
7401 Hochélaga Street
Montreal, Quebec H1N 3M5
Tel. 514-251-4000, ext. 3400
Association de parents pour la santé mentale de Saint-Laurent-Bordeaux-Cartierville
1055 Avenue St Croix, Block G, bureau 114
Ville Saint-Laurent, Quebec H4L 3Z2
10780 rue Laverdure
Montreal, Quebec H3L 2L9
Association des parents et amis de la personne atteinte de maladie mentale
1295, chemin Chambly
Longueuil, Quebec J4J 3X1
Association des parents et amis du bien-être mental du Sud-Ouest de Montreal
405 Terrasse Newman, Suite 260
LaSalle, Quebec H8R 2Y9
Friends for Mental Health, West Island / Amis de la Santé Mentale, Banlieue Ouest
750 Dawson Avenue
Dorval, Quebec H9S 1X1
Société de l’autisme de la region, Regional du Montreal metropolitain
4450 rue St. Hubert, suite 320
Montreal, Quebec H2J 2W9
Respite and assistance is also provided by:
Répit ressources de l’est du Montréal
These associations are comprised of parents and friends of people with mental health problems, offering them support and direction. They are independent organizations who cooperate with health professionals and mental health resources for maximum services and information. They strive to give the affected person personalized and quality care. They promote rights and fight prejudice and discrimination for the person diagnosed with mental illness. They also organize information sessions and group discussions.
Anglophone Family associations outside of Montreal
Montérégie (serving the Granby and BMP Hospital regions)
The Mental Health Advocacy for Anglophones
106 Drummond Street
Cowansville, Quebec J2K 3G6
Mental Health and Well Being – Estrie
257 Queen Street, #100
Lennoxville, Quebec J1M 5K7
Tel.: 819-566-5717 ext. 15 or 1-866-566-5717 ext. 15
1250 chemin Sainte-Foy
Québec, Québec G1S 2M6
Tel.: (418) 684-5333 or 1-888-984-5333
French Family Associations – Regional
Fédération des familles et amis de la personne atteinte de maladie mentale (FFAPAMM)
1990 rue Jean Talon Nord, bureau 203
Ste-Foy, Quebec G1N 4K8