What can I do to help?
- Role of family members
- How can you support your relative's recovery?
- Helping your family member get help
- What helps people recover?
- Working with service providers
- Dealing with crisis and emergency
- Taking care of yourself
Role of family members
Families are usually the main support network for a person struggling with a major mental illness and substance use disorder. They are the ones who help their family member deal with the illness on a daily basis.
Playing this role is far from easy. It is often not recognized or supported by the service system, and it can be frustrating and isolating, not to mention physically and financially demanding. The final section, section G, "Taking care of yourself" will address these kinds of caregiver needs and issues, and what to do about them.
Despite the burden, the support of family and friends is crucial for a person experiencing schizophrenia and substance use problems. Research has shown that when families are given the knowledge and skills to deal with mental illness and substance use, the ill family member is better able to cope and has a higher quality of life.1
|"A common denominator of recovery is the presence of people who believe in and stand by the person with mental illness. It is in this context that families can significantly aid in recovery2
We know that people with chronic illness do much better when they have a strong social network. Additionally, people who have major health problems recover more quickly and stay well longer when they have family members around to help them solve problems and deal with stressors in their lives. It is estimated that 40-65% of adults with a serious mental illness live with their families and many more have ongoing contact with their family.3
b. How can you support your relative's recovery?
Families can motivate their relative to access professional help and can educate service providers about approaches that are helpful for their relative. Family members can also help their loved ones locate community-based self-help or peer support groups. Double Trouble.
In order to effectively help and support your ill family member, you can:
• Avoid blaming your relative for behaviors that may not be totally under their control
• Try to understand why your relative is using substances and make every effort to keep communication channels open
• Maintain a home where use of illegal or dangerous substances is not tolerated. Family members may find that they must walk a fine line between serving as a supportive "helper" rather than an "enabler" who either implicitly or explicitly condones substance use.
• Learn to be aware of the ups and downs of serious mental illness and substance use
• Try to be positive about managing your relative's illness
• Take a realistic approach to relapse and developing a plan to handle relapse when it happens
• Acknowledge the tough times or setbacks and remind them of past successes
• Take care of yourself
What helps families cope?4
• Being informed
- Learning as much as possible about the facts of schizophrenia and substance use
• Having access to practical advice and information about how to deal with the illness and access to quality services
• Joining a self-help or support group of other families who have been through similar experiences
- There are predictable journeys that people make when they become ill, but, especially in the early stages, everything can seem confusing and overwhelming, and families may feel alone in their struggles.
- Self-help groups (run by the members) or support groups (facilitated by a professional) can help people by giving them access to the wisdom and experience of other families who have successfully dealt with similar situations.
- These groups also provide a platform for advocacy, the chance to help others, and the comfort of social support.
• Accessing practical support with regard to managing finances, housing support, services that offer respite for their duties as caregivers
• Sometimes, access to counselling re: dealing with the challenges of parenting/ supporting a loved one with schizophrenia and substance use, marital/relationship counseling to help deal with the strain that caregiving puts on families
c. Helping your family member get help
The decision to seek help for a relative or friend can be a difficult one for many reasons:
• The person may not wish to get help, or may not see that there is a problem;
• It can be unclear how to proceed and where to go for help;
• You may not know exactly what the problem is
It is immensely challenging and frustrating to deal with someone who is in distress but refusing to get help. If you suspect your family member or friend has a mental health and/or substance use problem, it's important to be open and honest when speaking with them about it. Here are some guidelines that can help5:
• If the person appears to be in danger to self or others, seek help immediately.
• Let the person know that you have noticed changes in their feelings and behaviour and ask if they are having difficulties.
• Listen to what they have to say and try to solve the problem together.
• Encourage the person to speak with their doctor or mental health professional. Offer to accompany them to the appointment.
• If the person does not believe that they have a problem, encourage them to speak with someone else they trust.
• Allow the person to stay in control by offering choices of ways you can help them.
• Offer to help the person find out about where they can get assistance.
• Reassure them that it's okay to seek help, even if they think they can cope without it.
• Stay positive about the future and reassure them that things will improve.
To read about people's experiences getting treatment and services for their relative, please see Section 4, Stories and Experiences.
d. What helps people recover?
The first step to recovery can occur in any number of situations, circumstances and/or events, which may lead a person to seek treatment or a self-help alternative.
It is important to note that recovery occurs as a result of a person's internal desire to change their life. Family members and service providers may facilitate, but not force this process.
In this section we'll look at some of the approaches that have helped people with concurrent disorders in their recovery.
i. Integrated treatment
Because people with schizophrenia and substance abuse issues have a complex set of interlinked problems and treatment needs, an approach that combines both mental health and addiction services in one program is the most effective.
Treatment programs for people with schizophrenia and substance-use disorders are more effective if they involve a range of interventions addressing the various biological and psychosocial problems associated with having concurrent disorders.6
Consumers (a term used to refer to people who use services for mental illness and substance use problems) have emphasized the importance of nonjudgmental acceptance of all symptoms and experiences related to both schizophrenia and problem substance use. When treatment is provided in a way that respects and values people and their responsibility to choose, it can play a major part in providing a person with the foundation they need to needed to achieve recovery.7
Consumers have said, and research has shown, that the most effective way of approaching the treatment of concurrent disorders is through a single provider who can be trusted to understand and address mental health and substance use problems simultaneously.
Integrated treatment is a way of making sure that treatment of both the mental health and substance use problems is smooth, coordinated and comprehensive. It helps to ensure that the client receives help not only with the mental health and substance use problems, but also in other life areas, such as housing and employment. Ongoing support in these areas helps to8:
• maintain treatment successes, like improvements in the symptoms of mental illness and reductions in substance use
• prevent relapses
• ensure their basic life needs are being met
• remain engaged in treatment
• make progress in their recovery
Common features of integrated treatment programs include:
• Assertive outreach to engage people who are often reluctant to come forward for help, support and treatment
• Motivational interviewing-based approaches to therapy designed to help people progress toward goals they define for themselves
• Behavioural approaches to therapy in which therapists help consumers to identify unhelpful thoughts and behaviours and learn healthier skills and habits
• Family intervention and support
- Therapists often work with one family at a time, but sometimes therapy is offered in a group setting with other families in similar situations.
- Group members can share feelings and experiences with other families who understand and support them.
• A readiness-to-change approach
- Treatment needs to match where people are at in terms of their substance use: are they ready to acknowledge that it's a problem? Are they ready to begin to consider ways of making changes in their use? Are they motivated to take action?
• A focus on a range of areas that go beyond eliminating symptoms of schizophrenia and substance use, including social, work and housing support
• A long-term perspective based upon a belief in the possibility for recovery and toward improving people's quality of life and including realistic, long-term goal setting
• in most cases, a tolerant, harm-reduction focused approach to substance use rather than a confrontational, strictly abstinence-focused approach
When people have concurrent disorders, abstinence (completely refraining form using substances) is often the best long-term substance use goal. Continued use of alcohol and/or other drugs may worsen emotional or mental health problems and threaten a person's overall physical and psychological well-being.
However, many people may, at least at first, lack the confidence and skills to decrease or stop their substance use. So, when clinicians work with someone who is struggling with both major substance use and mental health problems, the short-term goal is often to reduce the most harmful effects of substance use while developing a strong working alliance with clients. This trusting relationship can help clients understand the negative effects of their substance use and develop the motivation to change it. This approach - not requiring the person to commit to abstinence as a condition for help - is called harm reduction. Centre for Addiction and Mental Health. Concurrent Disorders: A Resource for Families. 2006
ii. Self management
One of the most important things families can do is to encourage their family member to take an active role in managing their illness.
Self management is a critical component of an approach to health care that has become very influential over the past decade or so. This approach, known as chronic disease management, was initially developed to improve the care of chronic disorders such as diabetes, arthritis and asthma. Chronic disorders are illnesses
• involving recurrent episodes
• with residual symptoms between acute episodes
• for which the traditional 'cure model' was inadequate.
Mental illness can be seen to fit into this category, and, for people with mental illness, self management is clearly an important way of working.
Self management means different things to different people. For some people, self management is "whatever we do to make the most of our lives by coping with our difficulties and making the most of what we have". For others, it means "avoiding or minimizing mental health crises through recognizing and acting on danger signals". For many, self management is a key element in their recovery journeys. In this section we'll explore what a self management approach can offer to people with schizophrenia and substance use problems.
In dealing with chronic disorders like schizophrenia and substance use, a person's ability to self-manage is an important factor in moving toward recovery. People become informed about their disorders, and they learn strategies for improving their mental and physical health and avoiding a relapse.
Is this approach realistic for people with schizophrenia and substance use problems?
The question of insight is an important consideration in thinking about self management for people with mental health and substance use problems. For someone with concurrent disorders, the degree insight and the ability to make sound decisions about treatment of won't be consistent, but will vary over time.
Most people with mental illness, most of the time, are able to understand information when it is clearly explained, apply this information to making rational decisions and acquire the skills needed to manage their disorders.
Someone who is in the middle of an acute psychotic or substance- related crisis may not be capable at that time of grasping relevant information or balancing the relative costs and benefits of different treatment options.
When people are acutely ill they may need a certain amount of decision-making done for them. This is because:
• They may not have insight into their condition
• They may be ill-informed
• They may have an negative attitude and think recovery is impossible
• They may not be in touch with reality
However, once people become more stabilized and well-informed, they should be encouraged to take an increasing degree of responsibility for their own mental health.
Elements of a self management plan can include:
• Self assessment and monitoring- identifying your own strengths, weaknesses, triggers, talents and needs, e.g. journal writing
• Coping strategies, stress reduction techniques, e.g. Self-help manuals, tapes, and videos produced by people in recovery on topics such as coping with voices and a description of what helped others heal, exercise, diet, meditation, stress reduction, visualization, etc.
• Goal setting - both long and short term, realistic and manageable, being organized and planning small steps toward larger goals
• Relapse management and crisis planning
Relapse is common for people with psychotic disorders, particularly those struggling with problem substance use. Relapse can happen for a variety of reasons. In some cases, it can occur because of factors outside anyone's control.
Relapse prevention usually involves a number of steps:
• Identifying ways to reduce stress or other factors that may lead to the worsening of the illness
• Identifying triggers of symptoms and relapse
• Recognizing the signs of possible relapse
• Managing medication and side effects
• Applying skills and techniques learned through treatment, such as methods for managing symptoms
• Developing healthy lifestyle habits
• Controlling one's environment to minimize stress
• Taking action early when warning signs first appear
Managing schizophrenia and problem substance use is an ongoing process. It involves thinking about many aspects of a person's life and the kinds of changes that would be helpful. Understanding the things that can trigger symptoms and possible relapse is an important first step in relapse prevention.
You can help your relative complete a relapse prevention worksheet located in the Tools section
The family's role in supporting self management
• Identify strategies to recognize the onset of relapse
A relapse is an expected part of the recovery process. It's important that everyone involved in illness self management recognize that relapse is common and that it does not mean failure.
• Look at your own substance use
Is there anything you can do to set an example or help your family member in their use? It may be that certain changes have to occur in the home or perhaps families have to seek help themselves.
• Watch your tone
In approaching your family member's use, try to express concern rather than disapproval. The important message to convey is not condemnation or disapproval of drug use, but rather your concern about the way it is impacting their illness.
• Support their commitment to change
Support and facilitate positive lifestyle changes.
• Set some house rules
Families need to be clear about their rules and expectations for their ill family member in terms of substance use and the unacceptable behaviour that may be connected to it. You might need to set clear limits and boundaries. Setting limits will also help your relative, especially if your expectations for his or her behaviour are clearly stated and consistently reinforced.
Communicating with your relative
People who are dealing with concurrent disorders are experiencing symptoms and characteristics that can interfere with their interpretation of words and situations. This will require adaptations in the way you communicate in order to increase your chances of being understood.
The following table shows some of the symptoms your relative may be experiencing and suggests appropriate ways to adapt your communication style.9
|Symptom or Characteristic
• Confusion about what is real
• Difficulty in concentrating
• Poor judgment
• Preoccupation with internal world
• Fluctuating emotions
• Fluctuating plans
• Little empathy for others
• Belief in delusions
• Low self-esteem
• Be simple and straightforward
• Be brief; repeat
• Limit input; don't force discussion
• Don't expect rational discussion
• Get attention first
• Recognize agitation and allow the person an exit
• Don't take words or actions personally
• Stick to one plan
• Recognize as a symptom
• Initiate conversation
• Don't argue
• Stay calm
• Be loving and accepting
• Stay positive and respectful
iii. Self-help and peer support groups
A peer support group is a group of people who all have similar experiences or problems. Group members can share their struggles in a safe, supportive environment. People who have recently been diagnosed with concurrent disorders can benefit from hearing about the experiences and coping strategies of others, and many eventually get to the point where they themselves are helping new members. Group members usually develop strong bonds.10
In addition to offering essential tools to assist people with their recovery journey, self-help is a valuable approach to establish positive relationships in the community and maintain connections with other people who have first-hand experience with recovery.
Self-help groups like Double Trouble, which are specifically geared toward people with concurrent disorders, have helped many people move toward recovery.
Family members can not only help their relative find a self-help group that meets their needs, but families themselves will also find a high level of acceptance, understanding and support from others with similar experiences and problems. The Schizophrenia Society offers "Strengthening Families Together"(SFT), a ten-week course that offers up-to-date information on many aspects of schizophrenia in the supportive context of a group experience. For more information on SFT, please see the website, or contact your local chapter of the Schizophrenia society. Organizations like the Family Association for Mental Health Everywhere (FAME) has groups for families. For more information on peer support groups, please see the Resources section.
e. Working with service providers
Families need to know what to expect of the mental health system, and be prepared to be assertive in seeking appropriate care for their relative. The following is a list of questions that family members may want to ask of a treatment agency11.
• What is your treatment philosophy and method?
• Do you refer clients to other agencies for some substance use and/or mental health services? If so, who is responsible for overall coordination of services?
• What is your policy about using medication as a treatment option?
• What percentage of your clients has concurrent substance use and mental health problems?
• Does the program support a full range of needs, such as social and medical?
• What role do family members play in their relative's treatment?
• Do you offer services and referrals for family members?
Families often provide the ongoing day-to-day care for their relative, so they should be involved in treatment planning if possible. Families often have information they would like the treatment team to consider as part of the planning and treatment process.
Many family members have been frustrated by unclear confidentiality policies. A treatment provider cannot share case-specific information with you without your family member's agreement.
Treatment providers should ask clients if they agree to their family participating in planning and treatment. However, many providers don't ask, so it's best if you talk to your family member and let the treatment team know what you have jointly agreed to. Try to get this agreement added to your family member's treatment record.
Learning about substance use and schizophrenia will help you recognize what type of information will be useful to the treatment team. It often helps to organize your questions and concerns into a document. Keep the document concise and the tone neutral. If possible, you and your family member should work together to decide what type of information to include12. Please see the Tools section for a Sample family information document.
Questions to ask about the treatment plan
• What is the preliminary diagnosis?
• What is the recommended treatment for the problem?
• What other treatments are available?
• What's the evidence that the treatment works?
• Who offers this type of treatment?
• What are the adverse effects?
• How will these effects be monitored?
• How long will the treatment be required?
• When will it take effect?
• What are the options if this treatment doesn't work?
• What is the cost of treatment?
• What is the relationship between the cost of treatment and effectiveness? (i.e. coverage issues)
• What happens if my family member refuses treatment?
• What can I expect in terms of communication between different service providers about my family member's care?
• How will the client, the provider and the family work together?
Even if your family member hasn't agreed to share treatment information with you, the treatment team can still talk to you about:
• The nature of mental health and substance abuse issues
• How to respond to disturbing behaviours
• How to get help in an emergency
• How to get help for yourself
The treatment provider can also listen to your observations. Avoid making treatment recommendations. Instead, frame your ideas as questions. Allow the team to draw conclusions from the information you present13.
f) Dealing with crisis and emergency
In a crisis, it is very important to try to stay in control of your emotions and reactions. Maintaining this control will enable you to cope and help your ill relative through this difficult time. At times like this, it is very helpful to seek support from people with whom you feel comfortable.
GUIDELINES THAT MAY HELP IN A CRISIS:
Try to remain as calm as possible
Speak slowly and clearly in a normal voice. Make statements about the behaviour you are observing: For example, "You are afraid/angry/confused. Please tell me what is making you afraid." Repeat questions or statements when necessary, using the same words each time.
Decrease other distractions
Turn off the television, radio, etc. If other people are present, ask them to leave the room. Talk one at a time. Try saying, "let's sit down and talk," or "let's sit down and be quiet."
Allow the person to have personal "space" in the room
Understand that too much emotion on your part can upset the individual further.
Ask if you can help
If the person appears not to be listening to you, it may be because other "voices" are louder.
The individual cannot be reasoned with at this point.
Don't challenge the person into acting out.
Don't make continuous eye contact
Don't block the doorway
Don't argue with other people about what to do.
What are Family Crisis Plans?14
These are plans designed by and with the person who experiences mental illness and his/her family to assist in the management of a crisis if and when it occurs.
It is helpful to have a crisis plan to follow and support teams in place to help you according to your wishes, in the event of a crisis.
Tips on preparing your Family Crisis Plan Form
• Prepare your plan when your family member is well and thinking clearly.
• Discuss your plan with your family and members of your support teams.
• Be sure to sign and date the Individual Crisis Plan Form.
Your Information Release and Confidentiality Form
• This form must be signed by the family and each support team member.
• Keep the originals in a safe place.
• It is advisable to revise this form every 6 months to a year.
Working with your support team
Give each member of your team a copy of your Family Crisis Plan Form and the Information Release and Confidentiality Form when completed so they can give you the support you wish as you resolve your crisis.
How this works
When you phone any members of your support teams because your family is in a crisis due to the mental illness of a family member or loved one, these forms ensure that everyone:
• Knows your plan as you have laid it out
• Can help according to your wishes
• Knows who else is on your support team and can work with them to help you
• Knows they are legally protected as they work to help you resolve the crisis
When your Crisis Plan may not work
If your crisis situation is life threatening or could possibly cause you or others bodily harm, the family's wishes as outlined in the Individual Crisis Plan may not be respected.
For worksheets on crisis planning that you can complete, please see the Tools section of this site.
g. Taking care of yourself
Caring for someone who is living with concurrent disorders is often even more
challenging than a having a physical illness. Due to the fears and stigma associated with mental illness, people can often feel alone or isolated, and afraid of sharing frustrations with others.
|What helps families cope?
• information & education
• social and emotional support
• skills that will increase coping ability
• hope that recovery can occur
Dealing with stress
Because schizophrenia and substance use problems are usually chronic disorders, families, and especially caregivers, need to learn to cope with long-term stress.
• Long-term stress can have many unwanted effects. A few of these are: exhaustion
• physical illness.
Three effective tools to help manage stress are:
• using your support networks
• creating personal boundaries
• finding someone to take over for you once in a while (respite)
Creating support networks
It is important for all members of the support network to learn everything they can about the illness, and to educate themselves about the services and resources available to them in their community. A support system is vital. It can include other family members, friends, co-workers, professionals, and advocacy groups such as the Schizophrenia Society of Canada, Mood Disorders Association of Canada, and/or the Canadian Mental Health Association-just to name a few.
Building a set of skills
• Family members need a number of particular skills. Some of these are: coping skills
• communication skills
• stress management skills
• problem-solving skills.
These skills can grow through interactions with your support network, or with the help of particular programs provided by advocacy groups such as the Schizophrenia Society of Canada.
Getting serious about self-care
Just as your relative living with mental illness has a treatment plan for recovery, your self-care plan can assist you in preventing burnout and help you maintain healthy emotional and physical health.
"Caregivers are most likely to feel stressed in terms of their emotional health, but also experience problems with their finances and physical health."
i. What is Self Care*
Self care has been defined as "the right and responsibility to take care of your physical, emotional and spiritual well-being"15. Self care may also be thought of as anything that contributes to your emotional, spiritual, physical, and/or social rejuvenation, enabling us to create balance in your life while providing care for your family member or friend with a mental illness.
ii. Creating a Self-care plan
Creating a self-care plan will help you ensure that you find ways of keeping a balance in your life. Following are some suggestions for different areas of life that other caregivers have included in their self-care plans.
• Participate in a caregiver self-help group or one-on-one peer support with another caregiver for practical information-sharing and emotional support
• Seek emotional support for yourself from family and friends and/or from professional counselors
• Take time for regular spiritual rituals that are important to you (such as meditation or attending organized religious services)
• Take time to enjoy nature
• Maintain good nutrition
• Exercise regularly
• Seek services to relieve you of some physical caregiving tasks (e.g., home and yard maintenance and cleaning services)
• Take time to maintain regular contact with other family members and friends to maintain these important relationships
• Take time for regular participation in your favourite recreational activities
• "Knowledge is power". Seek out information about mental illness, available resources, etc., so that you are well-equipped to deal with the challenges of supporting someone living with a mental illness
What can stop you from expressing your needs and caring for yourself?
- You may feel awkward or uncomfortable in asking for what you want.
- In stating your need, you become vulnerable to the possibility that the listener may say no.
Fear of being selfish
- You may be uncertain if your request is "reasonable." You may convince yourself that your needs are somehow less important than those of your family member.
- You may be tempted to give all of your energy (resources, time, money, etc.) to the family member. In so doing, you can lose yourself, and that strategy will eventually backfire. You may even forget that you have personal needs that you are neglecting.
• Guilt can drive yo u to ignore your own needs
• The consequences of ignoring your own needs over time usually are anger and resentment. These emotions can be expressed in one or more of the following manners:
- Displaced onto the children, co-workers, other family members, the family dog, etc.
- Directly expressed to your ill relative
- Passive-aggressively expressed to the family member you are struggling with (e.g., coming home late with no explanation; making meals that you know he/she dislikes)
- Turned inward on yourself, which can result in depression or self-destructive behaviour
Things to keep in Mind16
Learn to handle stress. Stress may increase depression and make everything seem worse, while learning to handle it will help with your own recovery.
earn effective coping skills. Develop a self-care plan, including activities you enjoy doing. Refer to the plan whenever you are stressed.
Do not blame yourself for the illness.
Separate the illness from the individual.
Do not take the illness personally.
Forgive yourself for any mistakes you feel you might have made. Be kind to yourself.
Allow yourself to grieve for what you may have assumed the future would have been.
Set boundaries and clear limits for what you feel you are capable of, and stick to them.
Get the right amount of sleep. When you are tired from lack of sleep or groggy from oversleeping, things can seem worse.
Develop better eating habits. Good food can give you more energy to face the day.
earn to take some time to relax. It will help you relieve unwanted stress. Set aside some personal time for yourself. Treat yourself well-you're worth it!
Please see the Section 4: Tools for more information on developing a self-care plan.
1 BC Partners for Mental Health and Addiction Information. How You Can Help: A Toolkit for Families. http://www.bcss.org/Get_Information/Resource_Materials/FamilyToolkit.html
2 BC Partners for Mental Health and Addiction Information. How You Can Help: A Toolkit for Families. http://www.bcss.org/Get_Information/Resource_Materials/FamilyToolkit.html
3 BC Partners for Mental Health and Addiction Information. How You Can Help: A Toolkit for Families. http://www.bcss.org/Get_Information/Resource_Materials/FamilyToolkit.html
4 Sarah Hamid-Balma. For Better or Worse: The impact of a child's mental disorder on the family. A review of the Literature. In Visions: B.C's Mental Health and Addictions Journal. Vol. 2. No. 3
6 Centre for Addiction and Mental Health. Concurrent Substance use and Mental Health Disorders. 2004 camh.net
7 New York State Office of Mental Health: Integrated treatment for co-occuring mental health and substance use disorders http://www.omh.state.ny.us/omhweb/ebp/adult_integratedtreatment.htm
8 Centre for Addiction and Mental Health. Concurrent Substance use and Mental Health Disorders. 2004 camh.net
9 Adapted from: When Someone You Love Has a Mental Illness by Rebecca Woolis, MFCC, 1992
10 Concurrent Disorders: A resource for families. Centre for Addiction and Mental Health, Pilot Version, 2006
11 Concurrent Disorders: A Guide for Families. Pilot Version. Centre for Addiction and Mental Health, 2006.
12 Concurrent Disorders: A Guide for Families. Pilot Version. Centre for Addiction and Mental Health, 2006.
13 Concurrent Disorders: A Guide for Families. Pilot Version. Centre for Addiction and Mental Health, 2006.
14 Family Mental Health Initiative of Simcoe County, 5 Bell Farm Road, Barrie ON L4M 5G1 Ph: 705-725-0363
15 Salvucci, 2001
16 Caregiver Stress: The Impact of Chronic Disease on the Family by Elisa Sonnenberg, MS Ed, Swedish Medical Centre