People Behind BCSS: Rosemary's Story
We all know how BCSS helps families find support. We all know that BCSS is there when people need them. But who are the people who make BCSS what...
BC Partners for Mental Health and Addictions Information and BC Schizophrenia Society gratefully acknowledges the many family members and volunteers who assisted in the development of this handbook, while providing care their loved ones. This guide also references The Workshop Manual by T.E.C. Network of Pennsylvania. The original handbook was developed by the Schizophrenia Society of Ontario Schizophrenia Information & Family Support Centre in Hamilton, Ontario.
“A Guide for Spouses of Partners with Serious Mental Illness.” ©2004 (Updated 2018) BC Partners for Mental Health and Addictions Information. Permission is granted to reproduce this material for non-profit educational purposes. Updates have been completed by B.C. Schizophrenia Society.
Funding for this project was provided by BC Mental Health and Substance Use Services, an agency of PHSA.
With the onset of mental illness, family members experience a number of emotions and strains. Parents step in to do as much as they can to protect their child, siblings wonder if they too will develop the mental illness and countless other feelings, from betrayal to worry, run through the minds of spouses and partners.
When it is a spouse, it can place undue strain on a couple’s relationship and create different challenges specific to them and their entire family. This guide was developed for family members who have a spouse living with schizophrenia to share information specific to their needs.
The goal of this guide is to acknowledge the impacts of mental illness and help spouses and partners build coping skills for daily living.
“This manual is a welcome addition to the reading materials currently available. When schizophrenia affects a partner it poses unique issues and problems that the couple must deal with. Any person can better equip themselves to live with this illness by educating themselves through reading and attending education and support groups. Informing ourselves in this way gives us the knowledge and the confidence we need to cope and also to dispel the myths attached to this illness.”
– Spouse of a partner with schizophrenia
To access additional information and support resources, visit the HeretoHelp website at: www.heretohelp.bc.ca
When your spouse has a mental illness, you will likely experience a range of emotions in response to their diagnosis and the changes that occur in your relationship. Some spouses feel guilt and shame – sometimes even blaming themselves for causing the mental illness, while others may feel angry or frustrated trying to cope with the challenges they encounter. Both partners may experience sadness and grief over the loss of the life they had envisioned together.
Whatever you are feeling about your spouse’s mental illness, know that all feelings are acceptable. Feelings are natural human reactions like sweating or blushing. While you can’t control how you feel, you can make decisions about how to cope with your feelings.
It’s not what you feel, but what you do that can make a difference in a situation.
Other people may have strong emotional responses to your spouse’s mental illness, particularly other family members. Sometimes their reactions may be based in a lack of understanding about the mental illness.
Remember that all feelings are acceptable and feelings are neither right or wrong. You can’t change how someone feels, but you can help them to better understand the situation.
Be extremely patient with yourself in trying not to judge other people’s feelings. It is very difficult to give others permission to have feelings that differ from our own or make us uncomfortable.
Before you can acquire the techniques and skills for coping with your spouse’s mental illness, you need a better understanding of what your spouse is experiencing. Imagine the following:
YOU are so tired that you just don’t have the energy to take a shower.
YOUR mind keeps wandering no matter how hard you try to concentrate on what your spouse is saying.
YOU can’t stand to be around your children. Everything they say and do irritates you and you can’t help snapping at them.
YOU feel wonderful and just bursting with energy, but your spouse keeps nagging you to take medication that will slow you down and take away those feelings.
YOU have been told you have a mental illness.
The Medication Dilemma
Answering these questions as honestly as you can will give you some idea of how your spouse might feel at times. Remembering these feelings will make it easier to understand their feelings and behaviour. This doesn’t mean that you can’t encourage and support your spouse to take their medication, but it helps to be aware of their perspective.
Sometimes people with mental illness don’t take their medication because they are not aware they are ill. Lack of insight into their mental illness, known as anosognosia, is a common symptom of mental illnesses like schizophrenia or bipolar disorder.
Imagine being told to take medication for an illness you do not think you have.
Talk to your spouse’s doctor if you are concerned they might be experiencing anosognosia.
For many spouses, the key to living with the illness is being able to ACKNOWLEDGE that their partner has a mental illness, a medical condition that involves behavioural symptoms. This means that, at times, they have little or no control of behavioural symptoms even during treatment.
Acknowledging the illness does NOT necessarily mean that you accept the illness. For most people, coming to accept a loved one’s mental illness is a process that can take years and involves going through many different emotional reactions. It is not uncommon for a person to experience a series of reactions similar to the process one goes through when grieving the loss of a loved one. This process is outlined in the next section.
Once you have acknowledged that your spouse has a mental illness, you may find it helpful to learn more about the mental illness and how it affects people. This can help you understand when to attribute your spouse’s behaviour to the mental illness. Here are some places to start looking for more information:
Make it your responsibility to learn as much as you can about the mental illness.
It is important to learn effective ways of asking for information from your spouse, the professional treating them, or their treatment team (i.e. physician, nurse, case manager, social worker). Be specific about what you need to know and why it is important to you.
Identify which symptoms of the diagnosed mental illness apply to your spouse, such as:
If your spouse is displaying violent or severely disruptive behaviour, recognize that you should NOT tolerate this kind of behaviour even if you attribute it to the mental illness.
You may accept that your spouse’s insomnia is a symptom of the mental illness, but you do not have to tolerate them keeping you up at night.
Once you have acknowledged the presence of a mental illness, another challenge is learning to cope with it. Here are three different approaches to coping:
Always avoiding your spouse, avoiding conflict with your spouse or avoiding any painful feelings associated with your spouse. This approach may bring short-term relief, but it usually does not resolve issues and may create other problems, such as:
Constantly trying to rescue and/or control your spouse. This approach may be comfortable at first, but usually leads to frustration, anger and a sense of being defeated and unappreciated:
Balancing your needs and your spouse’s needs:
This means being able to separate your needs/responsibilities from your spouse’s needs/responsibilities, and knowing when to put your needs first. This approach is best for everyone long term, although it may be difficult and requires self-discipline:
Take care of yourself, go to activities that are important to you even when your spouse does not support you doing so.
Coming to terms with a spouse’s mental illness takes time. It is common to experience feelings of loss for the life you imagined and you may find yourself going through a process of grieving before you can accept what has happened. The five stages of grief outlined by Elizabeth Kübler-Ross describe how people move through different stages as they come to terms with a loss. It is important to note that everyone handles grief differently and these stages may not match with your experience.
Denial & Shock
Denial and shock are common initial reactions that help people cope by numbing their emotions. Sometimes people deny the reality of a situation as a defence mechanism against overwhelming emotions.“It can’t be true!! I don’t believe it!! That wouldn’t happen to us!!”
Following denial, a person may express intense feelings of anger at the unfairness of the situation. This anger may be directed towards other people or unrelated situations.“Why me? Why did this have to happen to my spouse?”
In an effort to change the situation, a person may attempt to bargain with a higher power or consider what they could do differently to “fix” their spouse.“If we spend enough money on the best doctor, my husband will get better.”“I’ll try to spend all my free time with her to get her back to the way she was.”
As potential impacts of the situation set in, it can bring feelings of sadness and loss. This may include:
When a person comes to accept that their spouse has a mental illness, they are able to learn to cope with the new “normal.”
“I’ve been in shock, enraged, guilty, depressed and even hopeless since I learned my spouse has a mental illness. Lately, I’ve been feeling better.”
“I’m not happy about what’s happened and I’m still hopeful of a cure, but I’m getting on with my own life. My old interests are returning and I’m taking better care of myself and the children.”
Good communication skills will help you and your spouse work through challenges that arise. Even at the best of times, it can be difficult to discuss sensitive topics and make requests for your spouse to change their behaviour. Communicating can become even more challenging when your spouse has a mental illness, because their ability to think clearly or concentrate on the conversation may be affected.
When you have a realistic, reasonable and productive request to make, try the following suggestions when you make your request:
Try to use the following steps when making a request of your spouse:
When making your request, use “I messages”, not “you” statements. The “I message” is a basic communication tool that can be used to express negative feelings or make a request without coming across as accusatory or judgemental. It clearly communicates your needs to your spouse and expresses how their behaviour is affecting you.
The “I message” works like this:
I _____________________, when you ___________________.
“I feel relieved, when you take your medication.”
“I get scared, when you raise your voice.”
“I worry, when you come home late.”
Don’t expect the other person to be happy or comfortable about your assertiveness. If this is something new for you, it may take some time for them to get used to this type of communication. Expect that you may get some negative reactions in response to your request, for example:
Remember that you have decided that your request is reasonable and important to you. Remain calm and firm if you encounter a negative reaction. Do not judge or try to change the other person’s negative reaction. You could say, “I’m sorry you feel that way, but I think what I am asking you to do is reasonable and it would mean a lot to me if you would do it. I’m not going to argue about it.”
If the other person changes the subject, re-focus the conversation back to your request.
“I’ll be glad to talk about that later, but first I would like to finish discussing what we were talking about.”
Good listening skills are critical to good communication. Listening attentively to your spouse will help you to better understand their thoughts, feelings and concerns which will enable you to work together to solve problems. Listening involves both paying attention to the other person while they are speaking and ensuring that you understand the message they are trying to communicate.
To listen effectively when your spouse is talking, try to do the following:
Other people may have questions about your spouse’s mental illness. Here are some suggestions to keep in mind when communicating with others about the mental illness:
Be honest about your feelings and what dealing with the illness has been like FOR YOU.
Solving or managing problems effectively requires approaching them strategically:
Define the problem before trying to tackle it:
Once you have selected one specific problem, use the P.O.W. formula on it:
“P” For Past Experience: List everything you and others have tried to solve the problem. Cross out any attempted solutions that have not worked at all, after a fair trial, and stop using them!
“0” For Options: List every idea you and others can think of for solving the problem. Be creative! Circle your favourite idea. Be sure to clarify with each person involved, what exactly it is that you want them to do to carry out the plan. Now try it!
“W” For What If: Check your second favourite idea and use it as a back-up plan if your first choice becomes impossible or does not work. Having a back-up plan prevents you from feeling helpless if your first plan fails.
Violent or destructive behaviours should not be tolerated, even if they are part of the mental illness. The following are examples of behaviours that should not be tolerated:
Allowing yourself or other members of your family to become a victim of any of these behaviours poses danger and creates an extremely stressful atmosphere for the entire family, including the person with mental illness.
Trying to stop any of the following behaviours in someone with a mental illness can be like trying to stop someone with a cold from sneezing.
The reasons for these behaviours are much more complicated than a person trying to manipulate others. They are symptoms of their mental illness or attempts to cope with their symptoms. It is very unlikely that your spouse will be able to stop these behaviours upon request.
Even if a behaviour is a symptom or an attempt to cope with a symptom, you do not have to tolerate it if it is destructive or severely disruptive, or if it is causing harm to someone else in the household. For example:
For people with schizoaffective disorder or bipolar disorder, symptoms of mania can cause them to engage in destructive behaviours that may be extremely harmful to themselves and/or others. Both schizoaffective disorder and bipolar disorder typically involve swings in mood from depression to mania. During an episode of mania, feelings of euphoria or irritability combined with an increase in energy may cause a person to engage in harmful behaviours without consideration of safety or potential consequences. For example, they may display irresponsible sexual activity or reckless spending.
If your spouse experiences episodes of mania that cause them to act destructively, you may need to make difficult decisions about what you are willing to tolerate and how to set limits on their destructive behaviours.
Your spouse may not be able to control their symptoms, but they can control their reactions to them.
The following suggestions may be helpful if some of your spouse’s behaviours are not destructive, but are annoying:
If you decide you should not or cannot tolerate a particular behaviour, you need to use limit setting. You have the right to take care of yourself and your children.
What is limit setting?
Limit setting can be thought of as taking measures to protect yourself or your children from unacceptable behaviour from your spouse.
When do you use limit setting?
Use limit setting for any of the destructive or severely disruptive behaviours listed at the beginning of this section. You can also use limit setting for any behaviour that you have tried to tolerate, but just can’t.
What can you expect when you use limit setting?
How to set limits as a partner?
1. Pick ONE problem behaviour. Be as specific as possible about the problem behaviour. i.e. Instead of saying, “He’s lazy”, define the problem as “He never picks up his clothes.” It is impossible to set limits on laziness, but it is possible to set limits on someone who does not clean up after themselves.Be specific about what you will and will not tolerate in terms of that specific problem behaviour. i.e. You will tolerate your spouse watching TV late at night when they can’t sleep, as long as they watch it in a separate room and keep the volume low enough to avoid disturbing others.
2. Think of a consequence that meets the following conditions:
3. Inform your spouse of what you will and will not tolerate, as well as the consequences for the intolerable behaviour, preferably when you are BOTH emotionally calm.
4. Emphasize to your spouse that you know you cannot control their behaviour but you have to take measures to protect yourself and/or the children.
5. Answer your spouse’s questions to clarify the plan, NOT to defend or argue about it (unless part of your plan is to negotiate it with your spouse before you decide on a final plan).
6. Consistently check on whether or not your spouse is behaving within the tolerable limits you explained to them.
7. Make every effort to consistently carry out the consequences you explained to your spouse whenever they exceed the limits of what you said you would tolerate. Consistently and successfully carrying out your plan will make your spouse more likely to be respectful and responsive next time you set limits.
When you and your spouse are BOTH calm, explain to them what kinds of behaviours you will not tolerate, and the specific consequences that you and other family members have decided and agreed upon for specific violent or disruptive behaviours.
“Next time you threaten to harm any of us, the police will be called.”
Get to know and recognize signs that your spouse is becoming violent or disruptive. Your own uneasiness or fear is usually an indicator.
Tell your spouse that their behaviour is scaring or upsetting you. This feedback can defuse the situation, but proceed with the next suggestion if it does not. Saying you are scared does not mean you act scared.
If you and other family members have made a plan for dealing with a particular behaviour, now is the time to carry out the consequences. If you have not already warned your spouse of the consequences when they were calm, use your judgment and past experience to decide whether to warn them or to just go ahead with the plan without saying anything.
Give your spouse plenty of space, both physical and emotional. Never corner a person who is agitated. Verbal threats or hostile remarks constitute emotional cornering and should be avoided.
Give yourself an easy exit and leave the scene immediately if they are scaring you or becoming violent.
It is sometimes helpful to call other people from outside your home. Describe what has happened and ask two or more people to pay a visit to your spouse. Just bringing in other people, particularly the police, can quickly defuse the situation. It also sends a clear message that there are consequences for losing control. If you send the police, make sure they understand that your spouse has a mental illness.
If you, or someone else, has witnessed your spouse committing a violent or dangerous act and your spouse refuses treatment, the police may be able to intervene. Under the B.C. Mental Health Act, police can intervene in certain circumstances to take a person to be evaluated by a physician for involuntary admission. The evaluating physician will decide whether or not your spouse should be involuntarily admitted to the hospital for treatment based on specific criteria.
According to the B.C. Mental Health Act, there are four criteria that must be met before a person will be involuntarily admitted to hospital.
– Guide to the Mental Health Act, Ministry of Health
If the physician decides your spouse meets these criteria, they will complete a medical certificate that allows your spouse to be admitted for a 48-hour period. Two medical certificates by different physicians are required for hospitalization beyond 48 hours.
Do not try to ignore violent or disruptive behaviour. Ignoring the behaviour may cause your spouse to believe that this kind of behaviour is acceptable and repeatable.
Do not give your spouse what they want if they are trying to get it through bullying you. Giving in only reinforces this behaviour and makes it likely that they will use it again. ONLY give in if it is the only way out of a dangerous situation.
Do not try to lecture or reason with your spouse when they are agitated or losing control.
Never be alone with someone you fear.
Do not drive them to the hospital by yourself.
Mental illness is a major risk factor for suicide, therefore it is important to be aware of warning signs that your spouse may be thinking about harming themselves.
Remember your limitations:
Nobody has the power to make a person attempt or commit suicide. Also, nobody has the power to stop a person if they really want to end their life.
Recognizing warning signs:
The following are warning signs that a person may be at risk of suicide.
If you suspect your spouse may be suicidal, try to talk to them about it.
Ask: “Are you thinking about killing yourself?” You will not be putting ideas in their head by asking this question. Most people who are thinking about suicide are willing to talk about it.
Ask: “Do you have a plan?” and, “Have you taken any steps to carry it out?”
Show interest and understanding:
Stay with them or ask someone else to stay with them and contact a mental health professional, suicide prevention worker or police.
Get professional help, even if they have sworn you to secrecy or claimed they will get help.
Petition for an involuntary commitment if:
Even if you suspect the suicidal threat is manipulative, getting a professional involved is important for three reasons:
Do your best to remove anything they could use to harm themselves from your home.
Pills, razor blades, knives, guns.
When your spouse has a mental illness, you may encounter challenges with household finances. Your spouse’s mental illness may affect their ability to get or maintain employment due to symptoms of their mental illness, periods of hospitalization or stigma. If your spouse is unable to work due to their mental illness, your family may experience financial difficulties. Other common challenges you may face include increased medical expenses or financial mismanagement. This section offers suggestions for managing these challenges.
It is a good idea for you and your spouse to discuss whether to disclose their mental illness with current or future employers and when to make such a disclosure. Informing employers of their mental illness can have both advantages and disadvantages.
Points to consider if your spouse has a choice about disclosing their mental illness:
Potential advantages to disclosing once your spouse is hired:
Potential disadvantages to disclosing:
Here are some tips you and your spouse can use for speaking with an employer or co-worker about the mental illness:
Hospitalization due to mental illness disrupts in a person’s ability to work and can be a major obstacle to maintaining employment. The following are suggestions for dealing with an employer once a hospitalization due to the mental illness has occurred:
It can be challenging for someone with a mental illness to maintain employment. Symptoms may make it difficult for them to work and frequent hospitalizations may disrupt employment.
Here are some tips for financially surviving your spouse’s unemployment:
1. Assess whether your spouse is really too ill to work.
2. If your spouse is unable to get or keep a job due to their mental illness, consider asking them to apply for financial assistance from the government. Your spouse may qualify for Canada Pension Plan disability benefits or provincial disability benefits. Generally, a person is considered disabled under the Canada Pension Plan if they have a physical or mental disability that is both severe and prolonged and prevents them from working on a regular basis.If you decide that you would like your spouse to pursue government assistance, find out which type of assistance would be the most appropriate. Then make a firm “I message” statement to them about your desire that they apply for financial assistance.You can support them in the application process:
Learn more about available government assistance:
You and/or your spouse may be eligible for a credit on your tax return through the Disability Tax Credit. To find out more, contact Canada Revenue Agency or visit the Government of Canada website at:
3. If your spouse is not eligible or refuses to apply for government assistance, take a hard look at the reality of your situation and your priorities.
If your spouse loses a job or their employer drops employee medical benefits, ask your spouse to convert the group policy to an individual or family policy. Do this during the “grace period” because there will be no physical exams and no questions asked. Although you will have to pay for the benefits, you will not lose them.
Ask your spouse to check if their employer has, or is willing to get, a waiver from the medical insurance company so that coverage will not be withheld due to pre-existing illness.
If your spouse is able to apply for government assistance, they may be automatically entitled to medical coverage.
Your spouse may have difficulty managing finances or may engage in reckless spending as a result of their mental illness. The cognitive symptoms that accompany many mental illnesses make it difficult for a person to concentrate, remember and problem-solve, which are all skills involved in managing finances. As mentioned previously, some mental illnesses may cause a person to engage in behaviours without consideration of safety or potential consequences, including reckless or unusual spending.
Having your own source of income will greatly expand your options and protect you from financial mismanagement by your spouse.
Familiarize yourself with the family’s assets and debts.
Make a note of what time of the month each of these bills normally arrive. If your spouse is intercepting these bills and will not comply with your requests to let you see the bills and bank statements, you can get a post office box. Have the bank transfer the account to your name and send the bills to you there. Most creditors will not make this change unless you assume responsibility for the unpaid balance.
If there is any history of financial mismanagement by your spouse, use your communication skills to request that your spouse cancel credit cards and ATM cards and put all accounts and insurance policies in your name.
Whether or not your spouse agrees to the above requests, you can:
If you want to earmark any of your assets for your children or anyone other than your spouse, consult a bank or a lawyer about putting accounts in trust for the designated individual(s).
It is a good idea to consult a lawyer for technical assistance in order to protect yourself financially, including “living wills” and “power of attorney.”
While financial mismanagement is very stressful for you, consider that it is also stressful for your spouse.
Imagine how you might feel if you blew $3,000 over the weekend and then didn’t have money to buy the family groceries or pay the rent/mortgage.
Children are often confused when their parent shows symptoms of a mental illness, because they don’t know what is happening. Explaining the mental illness to children can help alleviate this confusion and clear up any misunderstandings.
Some advantages to explaining the mental illness to children include:
1. Start with yourself. Assess your attitudes and knowledge about the illness.
2. Build on what children say:
3. Use language and explanations that are appropriate to each child’s age and developmental stage.
4. Set a positive example for your children.
Children usually learn more from what their parents do than from what their parents say. Try as much as possible to practice using whatever information or attitudes you are telling your children to use.
As outlined above, children may experience a variety of feelings in response to their parent’s mental illness. Predominant feelings may vary depending on a child’s age and level of understanding. For example, guilt or fear are often the predominant feelings for younger children, while anger and embarrassment tend to be common for adolescents.
Whatever feelings your child may be experiencing, here are some suggestions to help them cope with these feelings:
1. Create an atmosphere that encourages children to talk about their feelings:
2. When your children do try to express their feelings show them that you are listening:
3. Help your child develop skills for handling strong feelings:
Practical suggestions for helping children to respond to their parent with mental illness:
Practical suggestions for helping children respond to others
Find out what community agencies are available to help your child
Kids/Teens in Control are support and education programs offered through B.C. Schizophrenia Society for children and youth ages 8-18 who have a family member with mental illness. These programs help children and youth understand mental illness and develop healthy coping strategies while connecting with peers who share similar experiences. Find out more at www.bcss.org/kidsincontrol.
If you are feeling “trapped” in the relationship, it may be helpful to consider why you are staying. Identify what your reasons are for staying.
If you think your only options are to stay or leave, remember that there is always a third option – staying in a different way. How might you do that?
Here are some tough questions to ask yourself:
Could some be caused by:
Learning more about the mental illness and finding support from others can help you cope with challenges that arise in your relationship. You might find it helpful to:
B.C. Schizophrenia Society offers educational programs and support groups for family members and friends who have loved one with a mental illness. Find out more at www.bcss.org.
Online support groups for family and friends who care about someone with a mental illness are also available through the Reaching Families Project at www.reachingfamiliesproject.org.
BC Schizophrenia Society (BCSS) is proud to be affiliated with HeretoHelp. HeretoHelp is a project of the BC Partners for Mental Health and Addictions Information, a group of non-profit agencies providing good-quality information to help individuals and families maintain or improve their mental well-being. The BC Partners members are Anxiety Canada (formerly AnxietyBC), BC Schizophrenia Society, Canadian Institute for Substance Use Research, Canadian Mental Health Association’s BC Division, Institute of Families for Child and Youth Mental Health, Jessie’s Legacy eating disorders prevention and awareness (a Family Services of the North Shore program) and Mood Disorders Association of BC (a branch of Lookout Housing and Health Society). The BC Partners are funded by BC Mental Health and Substance Use Services, an agency of the Provincial Health Services Authority. For more information, visit www.heretohelp.bc.ca.
Additional information and resources are available through the member organizations of the BC Partners for Mental Health and Addictions Information:
Anxiety Canada (formerly AnxietyBC) | www.anxietycanada.com
British Columbia Schizophrenia Society | bcss.org
Canadian Mental Health Association – BC Division | cmha.bc.ca
Canadian Institute for Substance Use Research | cisur.ca
FamilySmart | familysmart.ca
Jessie’s Legacy – Family Services of the North Shore | jessieslegacy.com
Mood Disorders Association of BC | www.mdabc.net
BC Partners for Mental Health and Addictions Information:
905-1130 West Pender Street, Vancouver, BC, V6E 4A4
1-800-661-2121 | www.heretohelp.bc.ca | firstname.lastname@example.org