Spouses Handbook

 

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Contents

  1. Introduction
  2. Feelings
  3. What It’s Like to be Mentally Ill
  4. Tips For Living With The Illness
  5. Communication Skills
  6. Problem Management
  7. Limit Setting as a Partner
  8. Managing Violent and Disruptive Behaviour
  9. Stages Of Accepting Illness
  10. Financial Issues
  11. Helping Children Cope
  12. The Future

Material in this handbook may not be reproduced without permission of the HAMILTON CHAPTER – Schizophrenia Society of Ontario Schizophrenia Information & Family Support Centre, 191 James St South, Hamilton, Ontario L8P 3A8 (CANADA), Tel: 905/523-7413. Fax: 9O5/523-8345


Acknowledgements

  • Family member/volunteers who, despite their care giving responsibilities, assisted in the development of this handbook.
  • The Workshop Manual, T.E.C. Network of Pennsylvania

1. Introduction

This booklet was published due to requests from family members who have a spouse ill with schizophrenia, for information specific to their needs. It covers topics that we hope will assist you with your knowledge, coping skills and day-to-day living.

This manual is a welcomed 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 ill with schizophrenia

The information and guidelines found in this publication apply to spouses of either gender.
For simplification, however, masculine pronouns are used throughout the text. The production of this booklet was funded by
The Ministry of Health/Province of Ontario

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2. FEELINGS
Try not to judge feelings

Feelings are neither right or wrong, just natural human reactions like sweating or blushing.

Examples:

  • It is natural to feel angry towards someone who is ill.Try not to say: “You shouldn’t’t feel that way.“Instead, say: “I can understand why that would make you angry. Please remember that he has an illness.”

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 ours or make us uncomfortable.

Examples:

  • When your mother expresses her anger towards your spouse you say: “Don’t be angry, he can’t help it. “Instead say: “I appreciate your concern, but we are coping just fine.
  • Your children get anxious in an anxiety provoking situation and you say: “Don’t worry.“Instead say: “Are you worried Daddy isn’t feeling well, and that is why he is cross.

Your feelings do not have to control your actions

It’s not what you feel, but what you do that can make a difference in a situation.

Examples:

  • If you are feeling angry with your spouse, do you verbally abuse him or back off until you are calm enough to think?
  • If you are feeling guilty about your spouse being ill, do you take measures to protect yourself or do you allow yourself to be abused?
  • Try to train yourself to calm down and think before you act. That way you have a chance to evaluate the best course of action for a particular situation.
  • The more knowledge and skills you have for dealing with a particular situation, the more choices you will have for choosing an effective course of action.

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3. WHAT IT’S LIKE TO BE MENTALLY ILL
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, you just don’t have the energy to take a shower.

  • Would a “pep talk” give you more energy?
  • Would nagging or threats make you feel better?
  • What might you do?

YOUR mind keeps wandering no matter how hard you try to concentrate on what your spouse is saying.

  • How would you feel?
  • What might you do?

YOU can’t stand to be around your children. Everything they say and do irritates you and you can’t help snapping at them.

  • How would you cope with your irritability?
  • Once you’re feeling better, how would the memory of your behaviour towards your children make you feel?

YOU feel wonderful and just bursting with energy, but your spouse keeps nagging you to take medication that will slow you down and rob you of those feelings.

  • What would you do?
  • How would you feel towards your spouse?

YOU have been told you are suffering from a mental illness.

  • What would you do?
  • How would you feel?
  • Possible reactions may include:
    • Withdrawing from people
    • Denial – “there is nothing wrong with me.”
    • Excessive drinking
    • Drug abuse
    • Blaming others – “you’re the one that’s crazy.”
    • Spending money on things that make you feel better temporarily
    • Abandoning old interests or anything that reminds you of your life before the illness

The Medication Dilemma

  • Did YOU ever not finish medication that was prescribed for you?
  • Did YOU ever have medication that made you feel sick to your stomach? Did you continue to take it?
  • Did YOU ever feel drugged or controlled by the medication you were taking? What did you do?
  • Did YOU ever take a medication that did not make you feel better? What did you do? How do you think it would have felt if people had insisted that you continue taking that medication for your own good?

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 your spouse’s feelings and behaviour.

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4. TIPS FOR LIVING WITH THE ILLNESS

Acknowledge the illness

For many spouses, the key to living with the illness is being able to ACKNOWLEDGE that their husband or wife has a brain illness involving 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 you accept the illness. For most people, coming to accept the illness (especially a mental illness) in a loved one is a process that can take years. It often involves going through many types of emotional reactions.

Once you have acknowledged that your spouse does have an illness of the brain, you may find the following tips useful in learning when to attribute your spouse’s behaviour to the illness:Understand that you may have some doubts about what is causing the problem.

    • read printed material
    • watch documentaries/dramas about mental illness
    • attend educational or family training programs
    • join support groups i.e.. Schizophrenia Society (in Canada), National Alliance for the Mentally Ill (in the U.S.)

Example: You may need to ask yourself is he really ill or does he just have a bad temper?Make it your responsibility to learn as much as you can about the illness.

It is important to learn effective ways of asking for information from your spouse, his treating professional or the 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 illness apply to your spouse, such as:

  • disturbed sleep patterns
  • decreased sexual desire – withdrawal
  • financial mismanagement

If your spouse is displaying violent or severely disruptive behaviour, realize that you should NOT tolerate this kind of behaviour even if you attribute it to the illness.

Example: You may accept that your husband’s insomnia is a symptom of the illness, but you do not have to tolerate him keeping you up at night.
Once you have acknowledged the presence of an illness, another challenge is learning to cope with it. Here are three different approaches to coping:

Avoidance: 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 anything and may create other problems, such as:

  • Staying away from home
  • Giving-in to your spouse
  • Compulsive behaviour, such as substance abuse, workaholism etc.

Co-dependency: 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:

  • Believing you have the power to save your spouse from the illness – always putting your spouse’s needs ahead of your own
  • Nagging
  • Losing touch with yourself and your own needs
  • Taking over all responsibilities when it is not necessary

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 yours first. This approach is best for everyone in the long run, although it may be difficult and at times require self-discipline:

  • Do not do things for your spouse that he can do.
  • Set limits on any of your spouse’s behaviours that you can’t or should not tolerate.
  • Take care of yourself, go to activities that are important to you even when your spouse does not support you doing so.

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5. COMMUNICATION SKILLS
Good listening skills are critical to good communication.Learn to make requests effectively.

  • Be assertive.
  • Be clear in your mind exactly what you want and from whom i.e.. spouse, psychiatrist, family physician, therapist etc.
  • Make an effort to develop a clear and open relationship and communication.
  • Be realistic and reasonable
    i.e.. Don’t expect a very shy person to attend a social occasion when he is not well.
  • Decide if what you want is likely to be productive.
    i.e.. Your spouse agrees to attend a social outing even while not doing well. Do the potential risks outweigh the potential benefits?

When you have a realistic, reasonable and productive request to make, try the following suggestions when you make your request:

  • Try to make your request when both of you are calm and not distracted if possible.
  • Limit your request to one specific issue.
  • Make eye contact if you are face to face.

Use “I” statements, not “you” statements.

  • State what you would like the person to do. The more specific you can be, the less chance there is that the other person will misunderstand or misinterpret your request.
  • State how the other person’s behaviour is affecting you.
  • Say what it means to you or why it is important to you if the other person complies with your request. i.e..”I just need you to listen to me blow off steam about what has been going on at home. I feel hurt and angry when I try to talk about my experiences and you change the subject or give advice. It would really be a big help to me if you could listen and try to understand what I have been going through.”

Don’t expect the other person to be happy or comfortable about your assertiveness. If this is something new for you, don’t expect praise for it from people who are used to your old ways.Be realistic about the kind of reactions you may get in response to your request. You may get:

  • Threats
  • Accusations of being demanding or pushy
  • Attempts to evoke guilt or shame
  • Attempts to change the subject

Remember that you have decided that your request is reasonable and important to you. Remain calm and firm if you meet with a negative reaction. Do not judge or try to change or control 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 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.”

Learn to communicate effectively with others about the illness:

  • Before talking to others about the illness, assume they may be uncomfortable and unknowledgeable.
  • Be selective about whom you talk to. Don’t choose people who are defensive unless you have no choice.
  • Keep the conversation about the illness short and contained.
  • Be matter-of-fact as if you were talking about any illness.
  • Find out what they know about the illness, correct any false ideas and fill in any in­formation gaps.
  • Be honest about your feelings and what dealing with the illness has been like FOR YOU!

Strategies to manage common behavioural problems of persons suffering from serious mental illness

Obtain information and educate yourself about the illness:

  • Use good communication skills
  • Make reasonable requests
  • Express feelings and concerns effectively
  • Develop special communication skills for when your spouse isn’t doing well -develop skills for talking to others about the illness and its impact on you.

Utilize problem management skills:

  • Focus on one behaviour at a time – be specific
  • How is it a problem for you?
  • What have you tried?
  • What are your options?

Use calm conditions.

  • When you are both calm, explain to your spouse the plan for dealing with a problem behaviour.

Plan for threatening conditions.

  • Develop skills and a plan for responding to violent, destructive or suicidal behaviour.

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6. PROBLEM MANAGEMENT
Research indicates that people who cope effectively do the following when faced with problems:

  • Work on one problem at a time.
  • Learn from mistakes. Abandon what does not work. Keep trying new approaches to the problem.
  • Use flexible and creative thinking in looking at options.
  • Stay open to suggestions from others.

Set yourself up for success in solving or managing problems. Define the problem before trying to tackle it.

  • Try to work on one problem at a time. Start with the most urgent or the simplest problem, focus on that problem only. Try to put other problems aside.
  • Be specific about your one problem. The more specific you can be in stating a problem, the easier it is to address. Vague or general problems are usually impossible to solve.
    i.e.. Rather than: “My husband is up all night” say: “My husband plays the TV too loud for us to sleep at night.”

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 whom you want to be 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 and hopeless if your first plan fails.

7. LIMIT-SETTING AS A PARTNER

Behaviours that should not be tolerated

Even if they are part of the illness, the following behaviours should not be tolerated:

  • Physical abuse
  • Clear emotional abuse
  • Sexual abuse
  • Destruction of property i.e.. punching holes in the walls
  • Setting fires or creating fire hazards i.e.. smoking in bed
  • Stealing
  • Illegal drug abuse
  • Financial mismanagement i.e.. spending sprees
  • Severely disruptive or tyrannical behaviours i.e.. Insisting all family members eat only certain foods. Refusing to let anyone use the phone.

Allowing yourself or other members of your family to become a victim of any of these behaviours not only poses danger, but also sets up an atmosphere of waiting for a ticking bomb to go off. Such an atmosphere is extremely stressful for everyone, especially your ill spouse.

Behaviours that are typical symptoms of mental illness

Trying to stop any of the following behaviours in someone who is mentally ill can be like trying to stop someone with a cold from sneezing.

  • Periodic departure from normal eating habits
  • Unusual sleep/wake cycles i.e..: Sleeping all day and staying up all night.
  • Delusions or disordered thinking
  • Hallucinations
  • Withdrawal to a quiet private place
  • Inappropriate social behaviour
  • Compulsive rituals

The reasons for these behaviours are much more complicated than an ill person’s attempts to manipulate. They are symptoms of their illness or attempts to cope with symptoms, in which manipulation may play only a small role, if any.

Even if a behaviour is a symptom or attempt to cope with a symptom, you should not tolerate it if it is destructive or severely disruptive, OR if it is driving you or someone else in the house absolutely “up the wall.”

  • You should not tolerate your husband’s excessive drinking which often leads to abuse, even though his drinking is his way of coping with his depression.
  • You do not have to tolerate your husband discussing his delusions if this is distressing to your children, even if discussing his delusions helps your husband cope with them.

Your spouse may not be able to control his symptoms, but he can control his reactions to them.

The following suggestions may be helpful if some of your spouse’s behaviours are clearly not destructive, but are annoying:

  • Change your attitude. i.e.. If your husband refuses to go out socially, try to get comfortable with the idea of going alone.
  • Do something that makes the behaviour more tolerable. i.e.. If your husband is not keeping the house as clean as usual, you might want to lower your expectations.

If you decide you should not or cannot tolerate a particular behaviour, you need to use limit setting.

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?

For any of the behaviours listed in section 7.
For any behaviour that you have tried to tolerate, but just can’t.

What can you expect when you use limit setting?

  • Your spouse will probably get angry.
  • Your spouse will test your limit-setting skills.
  • You may have your own emotional reactions like sadness or anger at having to set limits. It can feel like being a parent to the person who used to be your partner.
  • You cannot expect that you have the power to control your spouse’s behaviour. This unrealistic expectation will only serve to leave you feeling defeated, angry and frustrated.
    i.e.. You can set limits on your spouse’s cigarette smoking in your house, but you will not be able to stop him from smoking.
  • You have the right to take care of yourself and your children.

How to set limits as a partner

1. Pick ONE problem behaviourBe 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 husband watching TV late at night when he can’t sleep, if he watches it in a separate room and keeps the volume low enough to keep from disturbing others.

2. Think of a consequence that meets the following conditions:

The reason for selecting a particular consequence should be to protect yourself and/or the children. i.e.. When your spouse goes off his medication, either he has to leave or you will leave until you have proof that he is back on it. Though you would like your spouse to maintain himself on medication, the primary motivation is protection from the abusive behaviour that happens when he is off medication.

It will be possible for you to carry out this consequence when your spouse tests you. Remember, drastic consequences are very tough to carry out. i.e.. Threatening to leave.

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 his 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 him.

7. Make every effort to consistently carry out the consequences you explained to your spouse whenever he exceeds 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.

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8. MANAGING VIOLENT AND DISRUPTIVE BEHAVIOR

What can you do to manage violent or disruptive behaviour?

When you and your spouse are BOTH calm, explain to him what kinds of behaviours you will not tolerate, and the specific consequences on which you (and other family members) have decided and agreed upon for specific violent or disruptive behaviours.

Example: “Next time you threaten to harm any of us, the police will be called.”

Get to know and recognize cues that your spouse is becoming violent or disruptive. Your own uneasiness or fear is usually a good cue.

Tell your spouse that his behaviour is scaring you 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 he was calm, use your judgment and past experience to decide whether to warn him 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 unless you have the ability to restrain him. Verbal threats or hostile remarks constitute emotional cornering and should be avoided.

Give yourself an easy exit and leave the scene immediately if he is 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, whoever witnessed that act can petition for involuntary commitment. Once the police have this petition, they can take your spouse to be evaluated* for hospitalization. Find out the place and procedure in your area.

*The evaluating psychiatrist has the option of not hospitalizing your spouse if they think it is not warranted.

What you should NOT do

Do not try to ignore violent or disruptive behaviour. Ignoring only leads your spouse to believe that this kind of behaviour is acceptable and repeatable.

Do not give your spouse what he wants if the way he is trying to get it is through bullying you. Giving in only reinforces this bullying behaviour and makes it likely that he 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 he is agitated or losing control.

Never be alone with someone you fear.
Example: Do not drive him to the hospital by yourself.

Managing self-destructive behaviour

Remember your limitations: Nobody has the power to make a person attempt or to commit suicide. Also, nobody has the power to stop a person if he really wants to end his life.

Recognizing warning signs: Severe depression, especially when it is lessening.
Some signs of major depression include:

  • Expressions of hopelessness.
  • Perceptions of life as unbearable.
  • Feelings of personal worthlessness.
  • Sense of responsibility for an unforgivable sin.
  • Biological signs:
    • Appetite and weight increase or decrease
    • Increased or decreased sleep
    • Increased or decreased activity
    • Decreased sexual drive
    • Loss of energy and interest in usual activities
    • Decreased concentration and ability to make decisions

Hallucination or delusions that encourage the person to harm/kill himself or convince the person that he is immune to harm.Sudden changes in usual behaviour.

Examples:

  • Unexplainable brightening of a depressed mood. Withdrawal from others.
  • Sudden lack of motivation in usual role at work, school or home.
  • Making final arrangements.
  • Giving away personal possessions.
  • Patching up troubled relationships.
  • Seeing a lawyer to make a will.
  • Making suicide threats, particularly if the person has mentioned a specific plan or has attempted suicide in the past.
  • Making statements that reveal a desire to die.

What to do if you suspect someone is suicidal

Ask: “Are you thinking about killing yourself?” You will not be putting ideas in the person’s 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.

  • Statements like: “You should appreciate how lucky you are!” or “But you have everything to live for!” can make the person feel more guilty, worthless and misunderstood.
  • Remain available to talk. Try not to turn off the discussion.
  • Try to remain calm.

Take it upon yourself to immediately contact a mental health professional, suicide prevention worker, clergyman or police.

Get professional help EVEN IF THE PERSON HAS SWORN YOU TO SECRECY OR CLAIMED HE WILL GET HELP!!!

Encourage the person to get professional help.

Petition for an involuntary commitment if:

  • the person has made any self-destructive acts.
  • you have any doubt that the person can be trusted to seek help for himself.

Even if you suspect the suicidal threat is manipulative, getting a professional involved is important for three reasons:

  • It will show the person that there are serious consequences for this way of trying to get what he wants.
  • Even non-serious attempts can end in death or serious injury by mistake.
  • If anything unfortunate does happen, you will not have to be burdened with the guilt that you didn’t seek professional help.

Do your best to remove anything the person could use to harm themselves:

Examples: Pills, razor blades, knives, guns.

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9. STAGES OF ACCEPTING ILLNESS

Shock

” It can’t be true!! I don’t believe it!! That wouldn’t happen to us!!”

Anger

” Why me? Why did this have to happen to my spouse?”

Bargaining

Making deals with God or sacrifices that are unlikely to work…
Examples: “- If we spend enough money on the best doctor, my husband will get better.
– “I’ll try to spend all my free time with him to get him back to the way he was.”

Depression

Past Losses: “My spouse has lost so much… his career, his self esteem and many of his old friends. I’ve lost a lot too … some of my friends, my ability to be the parent I wanted to be, my sense of my self!”

Impending Losses: “It’s possible that my spouse will never be the same. He may not be the kind of husband and father I thought he’d be. Marriage is going to be different than what I expected.”

Guilt: “If I would have done some things differently, maybe this would not be happening.”

Damaged Self Esteem: “Why did I choose this person?” “How could I have let things get this out of control?”

Acceptance

” I’ve been in shock, enraged, guilty, depressed and even hopeless since my spouse has been ill. 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.”

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10. FINANCIAL MANAGEMENT

Managing illness-related medical expenses

If your spouse loses a job or the employer drops its 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 his employer either 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 unable to get or keep a job due to the illness, and your income and assets are modest, consider asking him to apply for government assistance, which will automatically entitle him to medical coverage.i.e.. Contact the Ministry of Health and Ministry of Social Services regarding long-term assistance.

Maintaining income

Should your spouse talk about the illness with current or future employers? Points to consider IF your spouse has a choice:

  • No disclosure about the illness is usually better than minimal disclosure. This runs the risk that the employer will make assumptions that the situation is worse than it is.
  • Disclosure before hiring can decrease the chances of getting the job due to stigma.
  • Potential advantages to disclosing once hired:
    • No need for secrecy
    • Greater likelihood that job will be held during hospitalizations
    • Co-workers can inform you and your ill spouse when they see warning signs of relapse
    • Employers and co-workers may be more supportive and make fewer demands.
    • It will clarify your spouse’s illness and make employers and co-workers more likely to trust him. They will probably sense something is wrong without being told.
  • Potential Disadvantages:
    • Employers and co-workers may overreact to spouse’s normal anger or “bad days”.
    • Increased risk of being “laid off”.
    • Increased risk of being stigmatized by employer and co-workers.

Tips you and your spouse can use for speaking with an employer or co-worker about the illness.

  • Arrange a time when you will both have uninterrupted time and privacy.
  • Choose wording carefully.
  • Answer questions in a straightforward manner, drawing analogies to diabetes or high blood pressure.

Tips for dealing with employer once a hospitalization due to the illness has occurred.

  • Employers will probably feel more reassured if they hear directly from your ill spouse.
  • Your spouse or you can tell the employer that there has been a hospitalization, he is being evaluated, and the employer will be notified as soon as it is clear what will happen and how soon he can return to work. Don’t say much else until the facts are known.
  • If the employer or co-workers want to send something to your spouse ask them to send cards or flowers to the home.

Options for financially surviving your spouse’s unemployment:

  • Assess whether your spouse is really too ill to work.
  • If you are not convinced, it may be helpful to learn more about the condition by talking to the treating professionals i.e.. physician, nurse, social worker, case manager, or reading more about the illness.
  • If you are still unable to understand your spouse’s problems with employment as illness-related, you will probably be paralyzed with resentment.

Decide whether you want your spouse to apply for financial assistance from the government if he is eligible.

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-statement” to him about your desire that he apply for either disability allowance or public assistance.

You can support him in the application process:

  • Offer to go with him when he applies.
  • Offer to call the appropriate office well in advance of the appointment to find out exactly what you need to bring and what you can expect.

If your spouse is not eligible or refuses to apply for government assistance, take a hard look at the realities and your priorities.

  • If you are not already employed, would you consider getting a job to help with the family finances?
  • If you are already employed, would you consider looking for a better paying position?
  • What are you willing to sacrifice to lower expenses?
  • Could your ill spouse do temporary work to help generate income?
  • Would you consider borrowing money?
  • Would marital separation or leaving the marriage help or hurt your financial situation?

Dealing with financial mismanagement

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.

  1. Make a list of all assets with identifying information. Consider institutions, branch, agent, account number, policy number, vehicle identification number.
    Examples: Property (Home, Car), Bank Accounts, Insurance Policies
  2. Make a list of all creditors, again with identifying information.
    Examples: Mortgage (or rent), Monthly utility bills, Credit card accounts

Make notes 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 agrees to cancel credit cards and automatic teller cards, and put all accounts and insurance policies in your name.

Whether or not your spouse agrees to the above requests, you can:

  1. Have the bank take your name off the accounts.
  2. Open new bank accounts jointly with someone other than your spouse, so that these accounts are protected.

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 individuaI(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.”

Force yourself to think of what it must be like 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.

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11. HELPING CHILDREN COPE
Some basic questions children may be asking themselves (either consciously or unconsciously) when a parent shows symptoms of mental illness:

  • Why is Dad acting this way?
  • Is this my fault?
  • Will things stay like this?
  • Do Mom and Dad still love me?
  • What will happen to me if our family falls apart?
  • Will this happen to me, will I get this illness?

Helping children to understand the illness and develop healthy attitudesSome advantages to explaining the illness to children include:

  • Children often imagine that things are worse than they really are.
  • Being honest with children helps them to trust you.
  • Understanding that there is an illness involved can help the child empathize with and respect the ill parent.
  • Possibly reducing some of the anger and guilt about what is happening.
  • Reducing any anger and mistrust toward you if left to discover on their own the ways that their family life differs from their friends’ during episodes of the illness.
  • Reducing some of their vulnerability, sensitivity, confusion and surprise when con­fronted with negative comments from others about their ill parent.
  • Research indicates that information aids coping.

Tips for explaining the illness to children:

Start with yourself. Assess your attitudes and knowledge about the illness.

  • The more you know, the better you can answer the questions matter-of-factly.
  • The more you believe that the illness is somebody’s fault, the greater risk you run of saying and doing things that can:
    1. Put your children in a loyalty conflict.
      Example: “Mom says it’s Dad’s fault. Dad says it’s Mom’s fault. Whose side should I take?”
    2. Teach children to blame others when bad things happen.
      Example: “Mom says it’s Grandma’s fault that Dad can’t handle any­thing.”

Build on what the children say:

  • Acknowledge any truth in what they say.
  • Respectfully correct anything that is based on wrong information or fantasy. Example: “Daddy isn’t acting this way because of anything you or I have done.”

Use language and an explanation that is appropriate to each child’s age and intelligence. Use examples that are familiar to them.

Example: (for a 5 year old)
” Do you remember when you had the chicken pox? You cried a lot, you didn’t feel like doing anything and you were grouchy toward all of us. It wasn’t because you didn’t love us or wanted to be that way, but because you didn’t feel good. Well, right now Daddy doesn’t feel good. That’s why he’s crying a lot, not doing anything and acting grouchy. He still loves you and me, but he can’t show it right now.”

Example: (for a 10 year old)
” You know how parts of our bodies get sick sometimes, like when we get stomach aches or sore throats. Well some people get sick in the part of their brains that controls feelings. That’s what is wrong with Dad. He has a sickness in that part of his brain that controls feelings. This sickness has a name. It’s called schizophrenia.”

If a child has seen violent or suicidal behaviour, situations requiring police intervention or any other traumatic incidents, don’t underestimate how terrifying the experience can be. The following is an example of an explanation for any forcible removal of a parent from the home.

Example:
” Daddy didn’t know just then what was best for him. He didn’t know that the hospital is the safest and most comfort­able place to be in while he is getting well. You know, there were times when you too had to do things you didn’t want to, but which we knew were good for you. It was that way with Daddy, too. Other people needed to decide what was best for him.”

Find out what community agencies are available to help your child.

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 them to use.

Examples:
As your child’s role model, be matter-of-fact when talking with others about the illness or relating to your ill spouse.

Be a good role model by protecting yourself from unacceptable behaviour even though your spouse’s behaviour is illness- based.

If you can be firm and clear about your need to set limits on their ill parent, it may help children through any temporary distress and teach them that marriage does not mean sacrificing one’s safety.
Helping children with their feelings

Predominant feelings may vary depending on a child’s age and level of understanding.

Example: Guilt or fear are often the predominant feelings for younger children. Anger and embarrassment tend to be common for most adolescents.

Create an atmosphere that encourages children to talk about their feelings.

  • Talk about your own feelings so that they have a role model.
  • Take advantage of moments that provide an opportunity for discussion of feelings.
    Example: Watching a TV show about a parent who becomes disabled may be an opportunity for discussion.
  • Be available to listen, but don’t pressure a child to talk about feelings if he is not willing.

When your children do try to express feelings:

  • Give your full attention. Make eye contact.
  • Check out what you are hearing in their words or interpreting from their behaviour.
    Example: “So you’re really angry at your father and me because of how much of my attention he takes?”
    Instead: You could say: “You’ve been slamming doors all night. Are you angry about something? I’m here if you want to talk.”
  • If the feelings shared by your children arouse strong feelings in you (i.e.. anger, sadness, guilt), resist the temptation to join in the conversation.
  • Getting judgmental or emotional might stop them from talking, now and in the future.
  • It is very difficult not to judge your children’s feelings if you don’t agree with them.
    Example: Don’t say: “You shouldn’t be angry with me. You should be thankful. I’m the one keeping the family together.”
    Instead: You could say: “I know you are angry, would you like to talk about it?”
  • You can spare children unnecessary disappointment by not telling them about planned events too far in advance.

Provide your children with skills for handling strong feelings:

  • Explain that feelings are neither right nor wrong. It’s OK and natural for them to have the feelings they are having.
  • Emphasize that talking about feelings can be helpful, and that you will al­ways try to make time when your children need to talk.
  • Explain that feelings do not have to control what we do. Give examples.
    Example: “It’s OK that you are angry at your father and I, but the way you are acting towards us now is not OK.”
    Example: “Being embarrassed about your father’s illness does not stop you from explaining it to your friends.”
  • Humour can help to make the whole communication seem positive, but do not use it to discount or ignore your children’s feelings.

Helping children learn effective verbal and behavioural responses

Practical suggestions for helping children to respond to their ill parent.

  • Share with your children any of the discoveries or skills you have learned about what works and doesn’t work in dealing with your ill spouse.
    Example: “I know it is upsetting when Daddy talks about the food being poisoned, but arguing with him about it doesn’t help.”
  • Make sure your children understand that even though their parent is ill, it is OK for them to protect themselves from any behaviour that seems scary or dangerous.
  • Give specific suggestions for how to protect themselves.
    • Make a rule that your children tell you whenever a situation involving your ill spouse has scared them or made them uncomfortable.
    • Teach your children to tell the ill parent whenever he is scaring or up­setting them.
  • Let your children know that showing their ill parent they still love him is very important.

Practical suggestions for helping children respond to others regarding their ill parent:

  • Involving children in keeping the illness a secret can be extremely burdensome to them.
  • What YOU say and do with others about the illness will probably influence your children more than anything you tell them to do.
  • Explain to your children that many people don’t understand the illness:
    • It may scare them.
    • They may try to make fun of it.
    • They may have ideas that aren’t true.
    • They may change the subject or say nothing.
  • Teach your children how to explain the illness to others. The more your children understand, the easier it will be for them to explain it to others.
  • Practice with them how to respond to other people:
    • “That’s the way God made my Daddy.”
    • “I wouldn’t make fun of your Dad if he was sick.”
    • “If you understood what is wrong with my father, I don’t think you would say what you are saying.”

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11. THE FUTURE

If you are feeling “trapped” in the marriage, it may be helpful to look at why you are staying. Asking yourself what is holding you, what are 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.

  • Have I mourned my unrealistic expectations for the marriage. Am I still trying to bring back what was or what I hoped would be, even though it is highly unlikely?
  • Do I make decisions that affect my spouse without involving him?
  • Am I doing more for my spouse than I really have to do?
  • Do I expect my spouse to know what I need without my having to tell him? How well do I communicate?
  • How often do I make time to try to emotionally connect with my spouse?
  • How well do I balance my needs with my spouse’s needs?
  • Are my arguments constructive?
  • Are my spouse’s criticisms of me valid? Maybe they are.
  • Are my spouse’s requests of me realistic and reasonable? Maybe they are.
  • Do I come across as a partner or a parent when I try to set limits with my spouse?
  • Do I see my spouse as a whole human being with strengths, talents, limitations, etc. who happens to have an illness, or do I see him only in terms of the illness?
  • Is there anything I still love about my spouse?
  • Of the things I dislike about my spouse, how good am I at distinguishing which are due to the illness and which are due to other factors?

Are some things caused by:

  • Unresolved issues with my own family
  • My spouse’s unresolved issues with his family
  • Medication side effects
  • Our relationship dynamics
  • Outside stresses

I can improve my ability to make these distinctions by:

  • Reading books or magazines
  • Attending educational programs
  • Attending support group meetings
  • Considering seeing a therapist.

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SCHIZOPHRENIA SOCIETY OF ONTARIO HAMILTON CHAPTER


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