Common Questions from Husbands/Wifes and Boyfriends/Girlfriends of people who have Schizophrenia

The following are questions commonly posted on our discussion boards, along with answers and advice from responding members. In many cases, member answers have been expanded on from other sources, and relevant links have been added for more information. These answers are meant only as a helpful guide and a resource for further information; each individual situation is unique and may need a tailored solution. Your loved one's treating psychiatrist is always a good person to ask when you have specific questions pertaining to your own case.

If you don't find what you're looking for here, please visit the Schizophrenia Husband/Wife Discussion Board (see the righthand menu column on the Schizophrenia.com homepage ) and post your question. Long-term partners, fiances, and boyfriends/girlfriends also routinely use this board. Our members are usually very generous with their advice and support. See also the General FAQs for extensive information on diagnosis, treatment, medication compliance, coping strategies, and practical matters for living with schizophrenia.

Index of Questions:

How can I relate to what my spouse is going through? How can I be supportive and understanding?
How can my partner have spells where they seem perfectly normal and loving, while at other times they are completely irrational?
If it comes to the point of involuntary commitment, will they ever forgive me?
What level of responsibility can I logically expect from my partner?
How much is "enough"? Setting limits, deciding when to stay and when to leave
How can I best take care of my own physical and mental well-being, without making my partner feel neglected or abandoned?
How can I cope with my partner's extreme emotional withdrawal?
The symptoms are affecting our physical and sexual relationship - is there anything to be done?
Living with a mentally ill partner is affecting my own thoughts - I have to remind myself who's delusional! Is this common?
Considering children and parenting
How can I help my children cope with mommy/daddy's illness?
Considering a long-term committed relationship with a boyfriend/girlfriend who has schizophrenia

How can I relate to what my spouse is going through? How can I be supportive and understanding?

Many partners struggle to understand what their ill loved one deals with every day, so that they can better support and understand them. One of the best things to do is find out as much as you can about schizophrenia as an illness. Check out recommended books and/or other media, visit a local mental health center or hospital, find a support group, and talk to others with first-hand experience. Arming yourself with information about how a person with schizophrenia relates to their world can make it easier for you to interact with and understand them.

Due to the symptoms of the illness itself, medication side-effects, frequent hospitalizations, or a host of other things (both physical and emotional), your partner's moods and reactions may change rapidly; they may reject or seem to not appreciate your efforts to help. This is always painful and difficult to deal with; however, it can help to recognize that many components of the illness contribute to this behavior, rather than a character flaw or unloving ambivalence in your partner.

Other resources to help you understand and cope:

1. '60 Tips for Communicating with a Mentally Ill loved one'
2. British Columbia Schizophrenia Society's Handbook for Spouses (online) - includes a section on the experience of being mentally ill, as well as tips for communicating with a mentally ill partner, handling common symptoms, and helping children cope.
3. 'The Sights and Sounds of Schizophrenia' - an NPR report with a virtual-reality simulation of what a person with schizophrenia might experience in day-to-day life.
4. Four Lives - Personal experiences with Schizophrenia and Mental Illness (The Infinite Mind radio)

How can my partner go through spells where they seem perfectly normal and loving, while at other times they are completely irrational?

As one husband put it, "I have been dealing with my wife's SZ for 10 of our 20 years of marriage, and the one thing that I can tell you is this disease is so unpredictable. Just when you think things are stablizing a relapse occurs, or just when you think things can't get any worse they can suddenly take a turn for the better."

Although living with schizophrenia is a life of trial-and-error and unpredictability, there are certain things you can do to help your partner effectively manage their illness, and make day-to-day living a calmer experience for both of you. It's always a good idea to have a "get better" and "get worse" plan in case your partner's illness takes a turn one way or the other - know your resources, who you can call on for help, and what you will do in each case.

Getting a treatment plan and sticking to it is a vital part of symptom control - medication is the best tool we have right now to deal with schizophrenia symptoms. Working and communicating with your partner's treating psychiatrist is also important - because of the lack of insight that often affects people with schizophrenia, they sometimes don't share everything about their illness experience with their doctors. You can report symptoms and behavior to the doctor that he/she may not know about, and make sure that your partner gets the best treatment possible.

Avoiding relapses is something that both you and your partner can work on together; you by providing a calm and secure home environment, and your partner by staying in treatment and learning the best ways to self-manage their illness.

If it comes to the point of involuntary commitment, will they ever forgive me?

Involuntary commitment is a terrible choice to make, but sometimes a necessary one (see Hospitalization - when and why it's necessary). It can be particularly difficult for you as a spouse to "force" a mentally ill partner into treatment, someone who is a legal adult in their own right, and also your equal and partner in life. However, the lack of insight that is a hallmark of schizophrenia, as well as ambiguous and narrowly defined legislation (in some countries) on mental illness, makes it very difficult to keep someone in treatment without their cooperation. Due to this, and a lack of mental health services and support in general, often a mentally ill person will become more and more out-of-control without ever getting treatment intervention. Sometimes the only option left after they have descended so far is involuntary commitment, for their own safety and for yours.

It's important to know the current laws for your state or country (if you are outside the United States) that govern when a person can be involuntarily hospitalized for treatment against their will. Knowing the criteria ahead of time will greatly smooth the process if it ever comes to that point; you will know what you need to demonstrate under the law to get the commitment, and it will save a lot of unecessary pain and grief.

The consensus among spouses on schizophrenia.com who have had to commit their loved ones (some of them several times), is that although it may be terribly hard and hurtful at the time, the patient generally does not stay mad. Once they have received adequate treatment, they are better able to recognize their own illness and your efforts to help them. Most of the time, patients who have been committed and recieved good treatment are grateful afterwards.

These spouses also reiterate that once the choice is made, it was the right thing to do. In our current healthcare system, sometimes you have to truly wait for a crisis to occur before you can get treatment that actually makes a difference. They suggest reminding yourself that your spouse is now in good hands and getting the help he/she needs, and to remember not to neglect your own mental health during this difficult time. Take the time off and do some special things for yourself - plenty of time to go back to being a caregiver in the future.

If your situation is not at the point of involuntary commitment yet, consider other assisted treatment options to help your loved one get the care they need.

What level of responsibility can I logically expect from my partner? Is he/she capable of household chores or contributing to income?

Everyone's case is individual; the level of functionality and independence that your partner can eventually achieve will depend on a number of factors, including the severity of the illness, the age of onset (earlier onset usually means a more severe prognosis), how well the symptoms are controlled through medication, and whether your partner is cooperative and receptive to treatment and therapy. It's important to recognize that learning to live and cope with schizophrenia takes as much time and effort as rehabilitating from any other chronic illness such as multiple sclerosis, cancer, or diabetes. However, as time goes on and you both become more familiar with the course of the disease, you will need to make your own choices regarding what your limits are as a caregiver and a partner, and what responsibilities your partner needs to take for themselves and their behavior. Dr. E Fuller Torrey (author of Surviving Schizophrenia) indicates that although the spectrum varies widely, most patients have some degree of control and can be held at least partially responsible for their behavior.

A good indicator of what functional level your partner can eventually reach is how functional they were before the onset of the illness. A person who was employed, a good and caring parent and partner, and a responsible contributor to the relationship, can reasonably be some of these things again with the right treatment and long-term therapy. Of course, expectations should be kept to reasonable levels; they will likely never be the "same person" (in terms of promise or productivity) that they once were. But a person who will never be able to hold a full-time job again may still be able to act as a caring partner in a relationship.

Learning to phrase your requests effectively to someone with schizophrenia can be an important part of easing your partner back into domestic responsibilities. The BCSS Handbook for Spouses suggests some of the following tips for communicating a reasonable 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.
--If you get a negative response (which is probably to be expected, at least the first time), remain calm and firm. Restate that the request is reasonable, and is important to you.

Establishing routines with small, achievable tasks is a recommended way to help a person with schizophrenia reintegrate back into daily life, and provide a "reason to get out of bed" to combat the apathy and lack of motivation that often accompany the disorder. Dr. Torrey emphasizes in his book that "solitude and structure" are two essential elements for a peaceful home environment. He suggests that most people with schizophrenia function better with regular hours for meals, chores, and other tasks. That being said, it's important to be adaptive if the person veers from these routines. Try to be flexible and find a creative solution that still accomplishes the goal but meets your partners needs at the time.

As far as returning to work is concerned, the best predictor is (again) whether the ill person was regularly employed before the onset of schizophrenia. To learn more about returning to work, vocational rehab, and income support for families with disabled members, see General FAQ - employment issues.

How much is "enough"? Setting limits, deciding when to stay and when to leave:

A key difference between partners and family members of the mentally ill are that partners are in the relationship not by blood, but "by choice." Anyone in a long-term relationship depends on their life partner for certain things: emotional and social support, financial contribution, participation in the house and family. For partners of the mentally ill, they may find themselves not only in the role of primary caretaker, but primary parent and primary breadwinner as well. This is an enormous and stressful burden, and it can seem to the well partner that there are few options in the way of emotional or financial support.

So many partners have battled long and hard with their vows of "in sickness and in health," forced into choosing between their own physical and mental well-being, and that of their loved one. Guilt, self-blame, and self-imposed obligation to care for the ill partner traps them in a situation where they sacrifice and ignore all their own needs, running the risk of physical and emotional burnout.

Each couple's situation is for both partners to evaluate on its own merits; however, a few factors must be in place if a relationship with a mentally ill partner is going to last:

1) The ill partner MUST be cooperative and receptive to treatment. They must stay in a treatment program that works and self-manage their own illness to help avoid relapses. A long-term commitment is impossible if symptoms remain uncontrolled, and medication is the best way to do this.

2) The ill partner must make a committment to stay away from all street drugs and alcohol. Substance abuse is a major problem among schizophrenia patients, and significantly worsens psychotic and erratic behavior. A substance abuse problem will undermine other treatment, and can lead to non-compliance, violence, or crime as symptoms continue to develop unchecked.

3) The well partner MUST be a willing and informed support for the ill loved one. He/she must understand the illness, the symptoms, the treatment, and ways to maximize rehabilitation and recovery. He/she should recognize that schizophrenia does not have a cure, and that although symptoms can go into remission for long periods of time, the disorder will never go away. He/she must be flexible and make certain concessions to assist the ill partner with their treatment and recovery.

4) The well partner must establish for his/herself personal limits - what behavior is and is not acceptable. Although schizophrenia causes people to behave in ways that are not normal to their character, the well partner must recognize which behaviors are symptoms of the illness, and which are by-products of the illness (emotional stress, shame, denial, etc) and/or honest-to-god character traits. Even some behaviors that may be a symptom of the illness are unacceptable under any circumstances (these include: physical abuse, destructive/harmful behavior to self, others, or property, financial mismanagement, extreme emotional abuse, or criminal actions). Your partner may not have control over his/her symptoms, but he/she can control their own reactions to them. This means they should be committed to staying in a treatment program that works, and committed to working with you as their partner to find reasonable solutions to problem behaviors. For an excellent explanation on limit-setting as a partner, see the British Columbia Schizophrenia Society's Handbook for Spouses.

An indicator to help assess the long-term health of a relationship with a mentally ill partner is capacity of your partner to return to his/her functional level before their illness. Many spouses married their ill partners before the first onset of schizophrenia, and so remember all too well the person they were before. Someone who was a committed and caring partner, a contributor to household and income, a sociable person with friends and hobbies before the onset will have a greater chance of achieving these things again with the proper treatment. Even if your partner can never hold a job again or go out much due to the illness, they may be able to resume domestic roles as parent and partner.

Well partners also have a responsibility to their own health and well-being. Primary caretakers of the mentally ill always have to find other outlets and support for themselves - through therapy, support groups, social or community activities - to avoid becoming completely overwhelmed by their loved one's sickness. In Victoria Secunda's book When Madness Comes Home, she states: "Virtually all of the partners of the mentally ill I have interviewd have had to construct parallel lives to find a sense of emotional gratification and respite from the strain of caregiving."

How can I best take care of my own physical and mental well-being, without making my partner feel neglected or abandoned?

Husbands, wives, and partners of schizophrenia patients on our boards all agree that it's vital for caretakers to give themselves "break time" away from their spouse, the illness, and their lives at home. As one member said, "it's so important to take care of ourselves in situations such as this. Even counselors are required to have 'mental health check-ups.' " Here are some things you can try:

1) Find a therapist, counselor, or support group, different than the one your spouse uses. Our members generally agree that having a group to talk to, vent with, and share stories and advice with is invaluable to the health, well-being, and sanity of a caretaker. See national and international support groups on schizophrenia.com. One member posted: "The spouses of the mentally ill are asking for medicine from their doctors to combat the depression, etc. that happens when always exposed to such psychological trauma. The spouses are asking for counseling, too." Don't be afraid to give yourself the help you need.

2) Have other emotional and social outlets for yourself. Continue to see friends and do things outside the home that you enjoy, even if your partner is not supportive of you doing so. Some spouses worry that their ill partners get overly anxious when they leave; some things you can do to help their anxiety is give a definite time when you will be home, and carry a cell phone so they can call if they get worried.

3) Education and advocacy are tools to help you "know your enemy" - that is, the illness itself and a mental health care system and legislation that fail to serve patients and their families. Many family members find personal satisfaction in using their own expertise and experience to advocate change in their community. Check out some of the recommended books on schizophrenia.com, and go through your local NAMI to find activist groups and resources in your area.

How can I cope with my partner's extreme emotional withdrawal?

Many partners are hurt by a feeling that their loved one is emotionally withdrawing into themselves, and sorely miss the closeness and mutual support of a reciprocal relationship. Even as the more visible symptoms of schizophrenia start to diminish with medication treatment, social and emotional withdrawal can persist to the point that the ill partner responds to questions with monosyllables, avoids eye contact or touching, and doesn't ask about or seem interested in your day. One spouse described her own experience by saying: "...now I just hope for some normalcy in life. His medications have brought back the normalcy for the most part. He still at times is nto as attentive and "there" emotionally as he used to be."

Emotional withdrawal/flatness is one of the negative symptoms of schizophrenia. Some of the newer antipsychotic medications can help alleviate these negative symptoms; however, they are not 100% successful, and the response is different from every patient.

Schizophrenia patients often have trouble with common social cues that most people do and recognize without thinking - body language, eye-contact, gesturing, varying the tone of the voice, etc. They don't realize they are missing these basic cues, and their absence can make the person seem much more withdrawn and cold than they intend to be. 'Coping with schizophrenia: social deficits' from mentalhealth.com has good explanations and suggestions for dealing with this.

Experienced members suggest finding other emotional outlets for yourself - make time to go out with other friends or just you, and spend another time with your loved one. Another thing you can do is specifically bring to the person's attention the fact that you want to share something with them. Sometimes you may have to simply, lovingly, request their attention, even if it feels odd to phrase it as a direct request. As one member said of her ill partner, "" It isn't that he doesn't care, but he just needs to be aware and told when he is not fully "there" for me."

For more information and ideas about how to cope with the common symptoms of schizophrenia, see the General FAQ - coping with symptoms.

The symptoms are affecting our physical and sexual relationship - is there anything to be done?

There are a couple reasons why a partner might be less receptive to physical and sexual touching than before. One is the symptoms of the illness themselves - emotional withdrawal (see above), apathy, paranoia, and others can all reduce sexual desire. Some antipsychotic or antidepressent medications may also reduce sexual desire as a side-effect - risperdol, zyprex, and zoloft are especially noted for this, although they are certainly not the only ones, and medication affects everyone a little differently. The stress of the disease and being a full-time caregiver can also profoundly affect both your and your partner's mood and drive for sex.

If medication is the issue, you can discuss with the psychiatrist the possibility of switching medications or lowering the dosage of the current one. Other couples have found alternative solutions to rediscover their physical sides. One wife with schizophrenia said that it helps her to get in touch with her emotional responses if her spouse does some less-sexual things to relax her first, such as a backrub, neckrub, or a shared bath together. Others suggest that using viagra the first couple of times can help your body "wake up" after a long time without sex.

If nothing seems to help, and sometimes nothing does, many spouses have made peace with the fact that it is infinitely better to have sanity in their lives than sex.

Living with a mentally ill partner is affecting my own thoughts - I have to remind myself who's delusional! Is this common?

Many people who live with mentally ill loved ones find themselves "questioning their own sanity", largely because the paranoia and hallucinations of the sick person are so integrated into their normal daily life. This does NOT necessarily mean that you have schizophrenia (see 'How Can I Tell If Someone Has Schizophrenia'), especially if you are able to distinguish between the real thoughts and the delusional ones.

Talking to a therapist, counselor, or peer support group can give you a good reality check, and relieve some of your daily stress burden. It's important for someone to care for the caregiver.

Considering children and parenting:

Many couples already have children by the time the first schizophrenic episode appears; others may want to consider the possibility of someday starting a family. Every couple is an individual case, based on the severity of the disease, how well it is managed with medication/therapy, the commitments of both partners, the outside support and financial situation, etc. There are some general things to consider first:

--Medication must be stabled and monitored. There should be a long-term treatment plan in place.

--As in any marriage, having a child is a gift in itself, and not a way to make other things in the marriage "better." The marriage must be strong by itself, and both partners strong in it, before bringing a child into the equation.

--Consider your financial situation - who is currently earning an income, whether it is stable, and whether it is enough to support a family. Consider how you could divide up financial and child-rearing/household responsibilities in a way that both partners can reasonably manage.

--Schizophrenia is partially a hereditary disorder; learn about the risks of passing it on to your children, and seek advice from your psychiatrist or a genetic counselor

--Talk to families with children that are affected by mental illness; get a sense of how they and their children cope, and how the illness affects parenting and home life. See the following article on how a sever mental illness can affect parenting.

How can I help my children cope with mommy/daddy's illness?

Children of parents with mental illness naturally have their own set of questions, concerns, and emotional issues to deal with. Depending on the child's age at the onset of the illness, they will have different abilities to understand and cope, and have different specific needs to address. In her book Troubled Journey, PhD Diana T Marsh points out that major traumatic events in any person's life can disrupt their development and "arrest them," to some degree, with unfinished business at that stage in life. Very young children are coming into their own self-concepts, bonding with parents and caregivers, and learning how to socialize and trust others. Older children are further developing a self-identity outside the home, establishing peer relationships, and attempting to chart their own path into the world. A severe mental illness in the family can affect any or all of these developmental landmarks, and it's important to recognize the unique ways that your children are experiencing the illness, and give them special support to help them cope.

The following are some things that adult offspring members of parents with schizophrenia wish that someone had told them about their parent's illness:

"Your [mother/father] has an illness called schizophrenia. It makes it hard for her/him to think straight, and so they act very oddly sometimes [examples of times the child has experienced or heard about]."

"Deep inside, your mother/father loves you very much, but this isn't easy to see because the illness gets in the way. Just remember that what you're seeing is symptoms of an illness. We're all doing our best to help her/him get well, but this is a very serious illness and hard to treat."

"Right now there is no cure for this illness. We really really really hope there will be a cure someday, but right now there is none. The mommy you have known and loved might never be the same again."

"Just know that I [and etc. etc. relatives, friends] love you very much."

See the Offspring FAQ guide to read about special issues or concerns that offspring of parents with mental illness often deal with. Other good resources include books written for children to help them understand mental illness, books for famlies affected by mental illness, the BCSS Handbook for Spouses with a special section on helping children cope, and 'Children of Parents with Mental Illness' provided by UACC4families.

Considering a long-term committed relationship with a boyfriend/girlfriend who has schizophrenia:

Many boyfriends and girlfriends are deeply committed to their ill partner. If you met and fell in love before the illness, or if the illness is well-managed and mostly controlled, you may be considering making a greater commitment - marriage and a future together. Know that your future together would inevitably also be a future with schizophrenia - it is not a disease that can be cured or goes away. Spouses on schizophrenia.com, when asked for their advice on this issue, all recommend doing LOTS of reading and LOTS of talking with other people about what a life with a mentally ill partner would mean for you. The following are some of their suggestions and experiences:

"I have been dealing with my Wife's SZ for 10 years and I promise you it doesn't get easier. It is very admirable for you to want to be a part of this person's life and try to help them, however it takes an extremely strong and selfless person to take on a person with SZ. The reality is there will be very little in the relationship for you. 99% of your time will go into the other person. As caretaker, because that is what you will become, you will find very little time for friends, hobbies, family, and even work. SZ will affect every part of your life. If you desire a family and a "stable" home, it is nearly impossible while caring for someone with SZ. Please carefully consider what you are getting yourself into. Research and learn all you can, talk to as many people as you can before making any lifechanging choices."

"Your relationship can work if he is committed to continuing treatment with a psychiatrist and to taking meds, and if he is willing for you to be involved in his treatment. Medication, no drugs or alcohol, and inclusion of me [the well partner] in the treatment plan are the very minimum I would recommend for staying with someone long term."

"Some people successfully have children with a mate with sz. I myself wouldn't want to do it, because I find just dealing with the illness to be overwhelming. Additionally, my husband couldn't cope with the stress of children. But he is very severely ill. There are gradations of this illness, as there are with most illnesses."

"I wouldn't automatically end the relationship because he has sz., but I would give it a long trial run. No one should go into a relationship with a schizophrenia patient expecting to fix them, or to love it away. It is a disease and it does not go away."

"Please just realize that if your life is only filled with grief from this situation, you're not going to be of much use to anyone, not your partner or your children. Take care of yourself first, before all else. And if you decide to stay together, you have to make sure there are hard and fast rules that he/she needs to comply with, or it's over, such as taking meds, fidelity etc. Don't forget that you DO have a choice whether to stay, and you CAN leave if YOU think it's for the best."