In This Chapter
Adjusting to the diagnosis
Breaking the news
Coping with the challenges of caregiving
Keeping the family safe and secure
Planning for the future
When someone close to you has just been diagnosed with schizophrenia, you’re likely to feel as though your world has come to an end. Many families have told us that the day they first heard the diagnosis divided their life into two discrete parts: before and after. Before, they may have only had vague feelings that something wasn’t quite right. After, their worst fears were confirmed: Someone they loved was diagnosed with a serious mental disorder that they knew little about. They came face-to-face with the prospect that their loved one’s strange or unusual behaviors were more than a small blip on the proverbial radar screen and weren’t likely to go away anytime soon on their own.
One mother told us that, after diagnosis, “Things are never the same.” You feel as though life — as you once knew it — has vanished and has been replaced by a strange new reality. You may worry about the impact of the diagnosis on the rest of your family: Will they be able to handle the changes this will bring? Will you ever be able to feel like a “normal” family again, to laugh and live like everyone else? You may also be concerned about what comes next in terms of treatment and think about the long-term consequences.
You may say, “Why me?” or “Why us?” — feeling that life has been unfair. You may look around you and be envious of those whose lives seem perfect in comparison (even though you never know what really lurks behind closed doors). Life is never fair and often throws unexpected curves — what counts most is how you cope with them.
In this chapter, we look at all the ways schizophrenia may impact your family and give you ways to cope with the challenges.
Adjusting to the Diagnosis
A diagnosis of schizophrenia is always frightening, but it doesn’t mean that the future is bleak or hopeless for the person with the illness or for the rest of your family. Instead of thinking the worst, stop and take a deep breath. The good news is that you’re finally able to attach a name and diagnosis to the same disturbing symptoms and behaviors that were worrying you before you knew what they were. Nameless fears are often far worse than a known reality.
Your initial reaction may be based on outdated and inaccurate information from years past. Perhaps you’ve heard stories of a relative who was diagnosed with a mental disorder decades ago and who, as a result of that diagnosis, spent much of his life locked away in a state mental hospital. Less than 50 years ago, people with serious mental disorders were routinely sent to institutions for long periods of time. “Out of mind” literally meant out of sight. Treatment options were limited, and the available medications had side effects that were hard to tolerate. A person being treated for schizophrenia may have looked peculiar, suffering from uncontrollable tics and movements that were common to an earlier generation of medications.
With the development of new treatments, new technologies, and changed social policies and attitudes toward the treatment of mental illnesses, many people with schizophrenia are able to live symptom-free or manage their symptoms. So instead of people being warehoused for long periods of time, hospitalizations (if they’re necessary) tend to be brief and focused on stabilizing acute symptoms, with the goal of returning the individual to the community as soon as possible. With proper outpatient treatment and supports, people with schizophrenia can recover and lead meaningful lives.
By getting a diagnosis (see Chapter 4), you’ve taken the first step in getting help for your loved one and the rest of your family. Understandably, you won’t be able to put all your concerns and fears behind you immediately; you need time to educate yourself and adjust. Initially, you may feel defensive, angry, ashamed, and/or bewildered. Friends and relatives may behave differently toward you, making you feel isolated and alone. All these reactions, while upsetting, are very normal and common. Initial negative reactions don’t mean that your family members will never come to accept the new reality of your life. They need time, as you do, to go through the predictable stages associated with grieving.
When you’re able to accept the diagnosis, you’ll be able to modify your thinking about your loved one’s annoying or vexing behaviors and view them through a new lens: as symptoms of a neurobiological brain disorder that can be treated and managed.
Staying positive and optimistic
For many years, it has been estimated that about one-third of those diagnosed with schizophrenia make a full recovery; another third get better but have intermittent (but treatable) repeat episodes; and the last third have persistent symptoms. As researchers learn more about the causes of and treatments for schizophrenia, there is every reason to be more optimistic about the future.
If your relative was recently diagnosed, the odds that her symptoms can be controlled are even better because of advances that have been made in mental-health treatment and research. Increasingly, relapses can be avoided (see Chapter 14), or recurrences can be managed quickly so that life can get back to normal; and early diagnosis and sustained intervention can help minimize damage to the brain, to self-esteem, and to relationships with family, friends, and neighbors.
Even if the symptoms of your loved one’s illness seem to be persistent or are treatment-resistant now (see Chapter 8), the rapid pace of research and new technologies promise improved treatments. Finally, public awareness of mental illnesses has increased over the last decade, leading to greater acceptance and understanding.
Understanding the nature of the illness and its treatment will help you appreciate the small and large victories you will achieve as a caregiver and the improvements you will see in your loved one. You’ll also learn how crucial it is to convey a sense of hope and optimism to your loved one, who may have experienced a string of losses before getting help. Most families learn that they’re more resilient and resourceful, as individuals and as a family unit, than they could have ever imagined.
Avoiding the family blame game
When a person is diagnosed with any serious illness, it’s natural for others to look for a cause or explanation. Why did she get lung cancer? Did she smoke? Why was she diagnosed with late-stage breast cancer? Didn’t she get routine mammograms?
In the case of schizophrenia, if the person who is ill is someone’s child, adolescent, or young-adult offspring, the tendency is for outsiders to erroneously blame his parents for something they did or did not do. Was his mother too controlling, too soft, or neglectful? Was her father too doting, too distant emotionally, or too involved with his work? Did both parents give mixed messages?
Even more unfortunately, it’s extremely common for one parent to blame the other. Each thinks back about the family tree on the other spouse’s side and invariably remembers someone who had one mental illness or another and pinpoints that as the source of all problems.
Don’t be surprised if you find yourselves blaming each other for things that happened years before. Realize that pain and tension are to be expected, but you need to make every effort to support, rather than undermine, one another.
Schizophrenia is a neurobiologically-based brain disease. Even if there’s a family history of mental illness, it doesn’t mean that someone caused the mental illness.
Even if no one blames you, you may cast blame upon yourself. It’s not uncommon for parents or partners to spend sleepless nights wondering what they did to cause this. Why didn’t you realize what was happening sooner? Should you have divorced or not divorced your husband? Did you favor one child over another? Are you being punished for something you did long ago? If you’re religious, you may find your faith wavering or disappearing completely under the weight of unrelenting guilt and anger.
Heaping blame on yourself, the person with schizophrenia, or anyone else can only have negative effects. Schizophrenia is a no-fault disease. No one wants to have the illness and no one has the formula for creating the perfect mix of genetics and environment that prime another individual for getting it. There is no benefit in looking back — you need to look forward.
Breaking the News to the Family
After you hear a diagnosis, you need to decide who to tell, what to say, and when to tell them. This is generally the case with other physical health problems you or your family members encounter. But because of the myths and misunderstandings about mental illness, it’s often difficult to tell even your closest friends, extended family, and neighbors, the people you ordinarily would lean on when you have a serious problem.
Just finding the right words to explain schizophrenia often presents a challenge. We hope that speaking with your doctor and reading this topic will give you the information, tools, and words you need to feel comfortable explaining it to others.
Before you break the news to others, educate yourself by reading as much information as you can about the disorder. The National Institute of Mental Health (NIMH; www.nimh.nih.gov), the American Psychiatric Association
(APA; www.psych.org), the National Alliance on Mental Illness (NAMI; www.nami.org), and the National Association for Research on Schizophrenia and Depression (NARSAD; www.narsad.org) all offer easy-to-read booklets free of charge to the public. You can request them from any of these organizations, and many are available on the Internet or in public libraries (see the appendix).
Because so many misunderstandings are associated with the diagnosis of schizophrenia, after you’ve had the chance to talk to them it often helps to provide written information to the people you decide to tell. If the news has taken someone by surprise, the person will be better able to comprehend what she has heard when she can read it more calmly, and see it in black-and-white.
Deciding who to tell
As difficult as it may be, except in rare circumstances, you need to tell your immediate family members about the diagnosis. They probably have some inkling about what’s going on already — and you’ll need to depend on them for their support. Your honesty in explaining what’s happened and keeping the lines of communication open will make everyone feel like they’re on the same team.
Don’t be surprised if someone’s initial reaction is negative, especially if they harbor misunderstanding about mental illness. Denial is common, as are several other misperceptions, such as:
The myth that schizophrenia is caused by bad parenting: If people believe this myth, they may blame one or both parents of the person with schizophrenia.
The myth that people with schizophrenia are faking and are really just lazy and irresponsible: If people buy into this myth, they may believe that the person has control over his symptoms and perhaps you’ve let your loved one “get away with it.”
The myth that people with schizophrenia are messed up from alcohol and/or drugs: If people believe this, they may think that the symptoms are solely caused by substance abuse, and that if the person stops abusing drugs or alcohol, the schizophrenia will go away.
The myth that schizophrenia isn’t treatable: If people think this, they may feel that the situation is hopeless.
When your family learns more about schizophrenia, they can become your most important allies.
Deciding whether to tell particular friends, neighbors, or employers depends on your own comfort level and whether you anticipate negative consequences. Though we strongly recommend telling your immediate family about your loved one’s diagnosis, you don’t have to tell everyone about your family’s personal issues.
Here are some red flags that should make you more hesitant about telling someone about your loved one’s mental illness:
The person has previously shown a lack of sensitivity to people with mental illness or other disabilities.
The person always asks invasive questions that make you feel worse.
The person has loose lips and is likely to spread gossip for no good reason.
Your loved one with mental illness would be embarrassed to tell the person herself.
Think through the possible outcomes before saying something you can’t later retract. Although most friends and acquaintances will be supportive, it’s possible that some may withdraw from you and your family. Conversely, some may feel very estranged and distant if they learn the truth long after the fact or from someone else other than you. Only you can gauge who you should tell and who you shouldn’t.
Many people living with schizophrenia find it more comfortable and less stressful to be open about their disorder. It takes a lot of energy to keep a secret of any kind.
Make sure that the person with the illness is likely to be comfortable with the decisions you’re making. This is another case where openness and honesty with your loved one is the best policy.
In the following sections, we cover the kinds of people you may decide to tell or not tell about your loved one’s schizophrenia.
A spouse or partner
Sometimes the person with schizophrenia is a married adult wrestling with the issue of whether and when to tell his spouse or partner. This may seem like a no-brainer: How could someone conceal the fact that he has schizophrenia from a spouse? Sometimes a spouse has had a psychotic break in the past, met and married his spouse during a time when his symptoms were under control, and then has a recurrence during the marriage. Not only does the recurrence catch the well spouse by surprise, but it challenges the sense of trust between the two people.
There are no hard and fast answers about whether someone with schizophrenia should disclose her prior illness to her partner. In the best of circumstances, a spouse should be able to share information about any significant health condition with the person she’s marrying, but fears about mental illness can be so great that it’s sometimes simply too hard to do.
If a spouse finds out about the illness after the fact, he may initially be angry and will probably need to gather information and garner support to get over the trauma. The person with schizophrenia may feel remorseful, stressed, and fearful that the outing of the “secret” will signal the demise of the marriage. And it may. It can go either way.
We know one spouse of many years who never came to visit his wife when she was hospitalized for schizophrenia the first time during their marriage; it ultimately ended in a painful divorce. In another circumstance, we know a marriage of more than 30 years, where a caregiver hung in with her spouse because of her abiding love and ability to cope with the extra responsibilities she shoulders as the spouse of someone who is quite disabled and unable to work.
If someone you know who has schizophrenia, perhaps a daughter or cousin, asks your advice about whether she should tell her spouse or partner, the most helpful thing you can do is listen, so that the individual making the decision thinks through the consequences clearly and is confident in her decision. There are no rights and wrongs. In tough situations like this, people have to go with their gut and do what feels most comfortable to them.
Your kids
If you have young children in the family, try to explain what’s happening around them, instead of assuming that they’re too young to understand or to be affected by what’s going on.
Keep your explanations very simple, give only as much detail as necessary to satisfy the child’s curiosity, and be sure that he understands that this isn’t a “closed” subject, but one he can feel free about discussing with you. You might say, for example, that Uncle Joe has a problem with the way his brain is working, and he’s going to see a doctor to take medicine to straighten things out. You also want to reassure your kids about their safety, because they may have watched frightening TV shows or movies depicting mental illness.
If your children are older, they’ll likely be able to handle more sophisticated explanations. For example, you might tell an adolescent that Uncle Joe has schizophrenia, which is a brain disorder, and that he is being treated with medication. You might discuss some of his symptoms and what it will mean in terms of his ability to get back to work.
The extended family
Deciding whether you should disclose the illness to more distant relatives depends on your relationship with them as well as your comfort level — and what you decide today isn’t a decision that’s set in stone. Many people living with mental illness find it less stressful to be open about their disorder with their entire family. Others feel that shielding Great-Aunt Mary, who lives a thousand miles away from the truth, may be best for everyone involved.
In all likelihood, close family members are already aware that something’s wrong. The family grapevine is quite effective in most families, so even relatives you see only occasionally may know that your loved one has a problem. The truth may be easier to deal with than suppositions and gossip.
One mother confided to us that the hardest thing for her to do was to tell her elderly mother that her grandson had just been diagnosed with schizophrenia. She knew that her mother would never understand and would likely blame her daughter’s permissive parenting style. As she anticipated, it wasn’t easy but gradually, her mother came to understand the illness by attending support-group meetings with her daughter, and it made the relationship between mother, daughter, and grandson that much stronger.
Friends and neighbors
You may have friends or neighbors with whom you feel as close as — or even closer to than — your family. You may already have shared your concerns and fears with them. If you feel that they’ll be able to provide you with support, you’ll probably want to include them in your inner circle.
If you aren’t sure or feel tentative about telling a particular individual, wait until you feel confident. It may simply be that the timing isn’t right.
Employers
One of the most difficult decisions people face is deciding whether to tell an employer about the illness. If you’re a caregiver of someone with schizophrenia, you may need to take time off from work to take your loved one to medical appointments, to provide transportation to programs, or to oversee care in your home.
Your loved one may want to tell her employer about her condition so she can benefit from accommodations under the Americans with Disabilities Act (ADA); see Chapter 12 for further guidance on handling these challenges.
Knowing what to say
As difficult as it is to break the news to someone else, you should expect that the people hearing it may feel uncomfortable, taken aback, or surprised. After all, you had time to prepare yourself for this talk and they didn’t.
Don’t be surprised at strange reactions. People often don’t know what to say or don’t make the kindest remarks when someone talks about illness, hardship or death. They may ask, “How did she get it? Does it run in your family? Is there any cure?” Recognize that they may need some time and information — just as you did — and that breaking the news may be a process rather than a one-time event.
Here are some guidelines that may make it easier for both you and the person who is first hearing about the illness:
Pick the right time and setting when you aren’t rushed and you have privacy. Blurting it out at Grandma’s 80th birthday party probably isn’t one of the best ways!
Explain that mental illnesses are no-fault brain disorders and that even scientists still can’t pinpoint the specific causes of mental illness in a particular individual.
Tell them that, in general, mental disorders are caused by a combination of genetic and environmental factors.
Explain that no one is to blame, not your loved one or your family.
Explain that just as you wouldn’t blame a person or his family for heart disease, diabetes, or asthma, you shouldn’t blame a person with schizophrenia for his disease. The days of people blaming everything on someone’s mother have gone out the window!
Use simple language that the other person can understand. Try not to repeat or make use of unintelligible medical jargon you’ve read or heard from doctors or therapists.
Don’t feel compelled to provide a specific label or diagnosis. Deciding to reveal doesn’t mean you have to reveal every single detail to every single person. Be judicious. (See the following section, “Deciding how much to tell,” for more information.)
Explain that the disorder is treatable and that your loved one is being treated by a specialist.
Because of the public misperception that people with mental illness are violent, you may want to add that your loved one doesn’t pose any harm or threat to you or anyone else (if you believe this is so).
Convey your hopefulness that the symptoms your loved one is experiencing will improve.
Tell the person that you hope you can count on her confidentiality and support and that you’ve disclosed the information to her because you trust her.
Deciding how much to tell
The Bazelon Center for Mental Health Law, an advocacy organization for people with mental disabilities, outlines four levels of specificity that people can use to explain mental disorders. Depending on how much you want to reveal and who you’re talking to, these are some options for explaining schizophrenia:
Very general: Say your loved one has a medical condition or an illness. This level of information may be appropriate for an employer.
A little more specific: Say that your loved one has a biochemical imbalance, a neurobiological problem, a brain disorder, or difficulty with stress.
Specifically mentioning mental illness: Say that your loved one has a mental illness, a psychiatric disorder, or a mental disability.
Giving the exact diagnosis: Say that your loved one has schizophrenia.
When your family is unsupportive
In most families, there is always at least one relative — if not more than one — who simply “doesn’t get it.” They don’t understand schizophrenia; don’t want to learn about it; and blame the victim for either being lazy or defiant. Alternatively, they blame the family — either a parent or a spouse — for driving the person “mad.” Or it may be a case of a grandparent or aunt who is in denial and tells you that your relative will “outgrow” whatever’s wrong.
Most people don’t full understand mental illnesses until they hit home. Their attitudes are usually driven by stigma, fear, or a lack of understanding. It may take time to engender support from your extended family. If your family isn’t immediately supportive, you may be fortunate enough to have close friends who better understand.
Even when they disappoint you, never give up on the people who truly matter to you — family or friends. Make it your job to teach them about mental illness.
Often mothers say that even their husbands are in denial and refuse to believe that their child has a mental disorder. For that reason, if you look around the room at any NAMI support group, you’re likely to see a preponderance of females over males. Perhaps, it’s because women are traditionally the caregivers in our society and more willing to share intimacies with friends, colleagues, and outsiders than are men.
When everyone isn’t onboard, this may make family gatherings awkward and dash expectations of having a “normal” family get-together, large holiday dinner or vacation. Here’s some advice for getting over the hump of such social occasions:
Keep the size of gatherings small.
Try to limit parties or events to people who are known to the person with schizophrenia.
Never force the person with schizophrenia to participate in social events; offer it as an option.
Speak to the person with schizophrenia so she knows what to expect before she arrives.
Be sensitive to the fact that other people may not know what to say.
Ask the host to let the other guests know that your loved one is shy, withdrawn, whatever — and may have a hard time in a large gathering.
Encourage other guests to act warm and friendly but to not ask too many questions.
Realize that the event may not go perfectly, but that’s okay. If you keep your expectations in check, you’re less likely to be disappointed.
Considering the Challenges of Caregiving
Schizophrenia, like other major mental illnesses, affects not just an individual but his entire family — parents, spouses, siblings, children, and grandparents. Except for the person with the illness, however, its effect is probably most profound on those who assume the mantle of caregiver(s).
The challenges that caregivers encounter vary depending on the severity of the illness and its symptoms. But especially at the beginning, caregiving can be totally consuming — affecting your work, finances, health, relationships, and almost every other aspect of your life.
Many families say that the hardest part of caregiving is emotional: Setting aside the dreams and expectations they once had of the individual with mental illness, and re-orienting themselves to a new reality. For example, parents may have to live with the realization that their straight-A student or standout athlete not only is no longer is at the top of his game — instead, he’s desperately in need of long-term psychiatric help.
When the caregivers are husband and wife, the tensions of living with a relative with schizophrenia can be so great that they challenge the marriage itself. Two parents may have different approaches to how the loved one’s
illness should be handled, or one may be in total denial while the other is trying to deal with the reality. It’s estimated that one in five marriages become troubled (many leading to divorce) when a family member is diagnosed with a serious mental illness.
Mental illnesses, especially schizophrenia, are often accompanied by a loss of friendships for the person with schizophrenia. Your relative may come to rely on you for extra social support, either by phone or in-person. Provide it whenever you can while you encourage the individual to join peer groups, social clubs, and community organizations (see Chapter 12).
Accepting the job nobody wants
Whether your relative is your mother in mental decline with Alzheimer’s disease, your child with Down syndrome, or your life partner with schizophrenia, no one signs up to be a caregiver for a person with special needs — it just happens. Family members assume the role of caregivers by default because society rarely provides any viable alternatives. The role is one that demands a tremendous investment of time and emotions.
When community supports are lacking, caregivers are thrust into the role of de facto case managers providing ongoing caregiving and oversight, as well as emotional and financial sustenance, for their loved ones. They may need to take time off from work to accompany their relative to medical appointments or to provide transportation to various social-service programs. They may need to suspend their own social lives as it becomes increasingly uncomfortable to entertain people at home or plan for dinners out because of the unpredictability of their lives. They may need to spend inordinate amounts of time talking to their relative on the phone, trying to dispel fears and misplaced anxieties. Or they may only be called upon to fill the void created by the loneliness common to people with schizophrenia who have trouble maintaining social relationships.
Professionals come and go over the years, but family members typically provide care that extends over decades — sometimes until death. Whether the ill person is a parent, a sibling, or a child, family members are always on call, literally and figuratively, whether their loved ones are living with them or living somewhere else. Consistently, family members describe the tension they feel each time the telephone rings. The call may come at work, while they’re on vacation, or in the middle of the night. It may be a call from a hospital reporting a psychiatric emergency involving their relative, a call from a law enforcement official, or incoherent rambling from their loved one.
Family members also have cause to worry when they don’t hear from their loved one. They wonder where the person is, whether she’s adhering to treatment, and what she’s doing. It’s hard for caregivers to ever feel truly rested and relaxed because of the uncertainty of their lives and the unpredictability of the illness and its symptoms.
Staying home or coming home again
A person’s home is a safe haven — a refuge from the world where you can retreat and feel safely taken care of — and this is true whether you have schizophrenia or not. So it’s not surprising that a study by NAMI suggests that about four out of ten people with serious and persistent mental illnesses wind up living with their families. A study in New York State found that families provide more housing beds for people with mental illness than hospitals, adult homes, or nursing homes.
Often, you and your loved one with schizophrenia may have no viable alternatives but to live under the same roof for a substantial period of time. Sometimes people with mental illness never leave their parent’s home; other times, they return from college or remain at home long after their peers are working and living independently. For families, it can mean that a once-empty nest is no longer empty. If the family has other young children who are still living at home, it can introduce conflict and chaos. A home that was once placid becomes filled with stress.
Chapter 12 provides some concrete strategies for minimizing stress in the home.
Remembering the demands and rewards of caregiving
The burdens of living with someone with schizophrenia can be overwhelming. When the illness hasn’t yet been treated, hasn’t been adequately treated, or is in its most acute stage, you may have to contend with a frightening constellation of unpredictable symptoms and behaviors.
One older mother told us of her terror, living with her son, a strapping young 24-year-old man who weighed more than 250 pounds and who consistently threatened her. She feared for her safety each night, moving a bureau in front of her door before she went to bed. Sometimes, family members are victims of assault and abuse. Another mother told us of a daughter who threw plates at her and destroyed many of the decorative items in her living room when she flew into one of her frequent rages.
Other caregivers are challenged by their loved one’s illogical thoughts and behaviors. One mother told of her son who would take walks from one county to another until the soles of his shoes wore out. She was unable to convince him to curtail his travels and always worried that the phone would ring saying that he had been hit by a car or had gotten into trouble.
If someone is paranoid or suspicious, the tiniest comment can be misinterpreted as an insult and provoke anger and rage. Periods of psychotic behavior can be interspersed with periods of lucid thinking, making it hard to adjust to the ups and downs of daily existence.
In addition, the caregiver has to make sense of a mental-health system that’s complex and often not user-friendly. With cuts in public funds at every level of government and pressure by private insurers to cut back on costs of medical care and medications, the system is trying to do more with less. This makes it difficult to access quality care, especially during crises.
Although the job may appear, at times, to be thankless, there are often rewards. With proper treatment, the acute symptoms are usually temporary. When caregivers see their loved one show signs of growing independence, clearer thinking, and diminished symptoms, the results are very gratifying. Many patients recover and exceed their family’s and even their doctor’s expectations.
Many times the relationship between the caregiver and the person with mental illness becomes reciprocal, with the person with schizophrenia helping around the house with routine chores and assisting in the care of their older parents.
Avoiding caregiver burnout
Because of the demands and stress of the job, caregivers are prime candidates for burnout. Some of the signs of burnout include
Persistent feelings of exhaustion and fatigue Diminished interest in the things around you
Free-floating anxiety
Feelings of depression, isolation, and loss-of-control
When you get on an airplane, the safety instructions always suggest that parents put on their oxygen masks first before they do the same for their child. This also applies to caregiving. To perform adequately as a caregiver, you need to take care of yourself first if you want to be of any use to your relative. This requires, to the extent possible, that you find ways to identify and minimize stress.
Taking care of someone with schizophrenia, particularly when the individual is in the throes of psychosis (with disturbed, illogical or disorganized thinking) can be extremely draining. You may be tempted to drop everything around you and focus only on the illness, but you have to guard against this temptation. Find ways to pace yourself and set limits to how much you can or cannot do during the course of a day.
It never pays to be a martyr. Your resentment will seep out, even without your knowing. You’ll also be shortchanging the rest of your family. Here are some tips to reduce the stress of caregiving:
Get regular exercise. Keep to a balanced, healthy diet Don’t shortchange yourself on sleep. ‘ Be prudent about maintaining your own physical health. Make time to nurture existing friendships.
Build short breaks into your day and plan downtime over the course of the week.
Plan respites or vacations from your caregiving responsibilities.
Don’t hesitate to ask for help from others when you feel overwhelmed.
Above all, continue to do the things that normally give you pleasure: Pursue your hobbies, go to the movies or theater, take a walk on a sunny day.
One of the best ways to avoid burnout is to bond with a friend in a similar situation who can truly understand what you’re going through. It’s likely that your peaks and valleys won’t occur simultaneously and that you’ll be able to provide support for each other at various times.
Most important, always remain hopeful and remember that, as bad as things may seem today, the crisis you’re experiencing now will eventually pass.
Keeping the Whole Family Safe
One of the myths associated with schizophrenia is that most people with schizophrenia are violent. This is far from the truth. In reality, people with schizophrenia tend to be the victims, rather than perpetrators, of violence. On the streets, they’re often perceived as vulnerable, easy targets.
However, this doesn’t mean that safety in the home should not be a concern or consideration. When someone with schizophrenia is actively psychotic — with unrealistic, delusional, or paranoid thoughts — she may pose a threat to other people in the family by her thought disorder. She may hear voices that tell her to harm someone around her or feel threatened for no valid reason and seek to retaliate.
The risks of violence increase:
When mental illness remains untreated
When the individual has a past history of violence and aggression When mental illness is complicated by use of alcohol and/or drugs When the person has hallucinations or delusions
You can, however, minimize the risk of violence in the home:
Try to create predictable routines.
Set up reasonable rules and limits for behaviors under your roof
(for example, no loud music after 11 p.m., no use of drugs in the home,
and so on).
Set up appropriate and enforceable consequences when rules are broken.
When an individual seems upset, try to diffuse rather than exacerbate his anger.
Choose your battles; minimize confrontations on unimportant issues.
Don’t get so close to the individual that she feels physically threatened.
Separate the person from the illness. Don’t take offense from remarks that are clearly part of the illness.
If you’re worried enough, lock your bedroom door at night.
Don’t hesitate to get help when you need it in an emergency (see Chapter 14).
If you’re physically threatened or you truly feel that you, your relative with mental illness, or someone else in your home is in immediate danger, call 911 and be sure to explain that the person has a serious mental illness.
Many times a written contract between you and your relative, agreed upon when the individual is stable, can help define boundaries and avoid arguments.
Many times a person with schizophrenia can appear menacing to an untrained or inexperienced police officer causing them to overreact with force. If you have any concerns that your relative may become dangerous, contact your local police department before an actual emergency. Explain that your loved one has a mental illness and is sometimes prone to odd or unusual behaviors. Explain that your relative isn’t dangerous but you want to be able to call upon them in case you need their help.
Siblings and Schizophrenia
The sibling bond is one of the longest and closest of any familial relationship because siblings tend to be closer in age and generally outlive their parents. So when one sibling is diagnosed with schizophrenia, regardless of her age, it has a profound effect on the other.
Keeping other kids in the loop
When any child is affected by a serious illness — be it cancer, autism, diabetes, or schizophrenia — it’s easy for parents to hover over that child and lose sight of the needs of the well siblings. This approach is problematic for the person with the illness, for the well sibling, and for the rest of the family. Families need to achieve balance in addressing everyone’s emotional needs.
Of course, sometimes the person with schizophrenia will require extra attention — but parents need to make sure that other siblings don’t feel neglected or ignored. Also, children are very perceptive when parents seem to be applying attention or even discipline unevenly. Being more attentive, or more lax, with one sibling than another can stir up resentment.
Young children, in particular, may feel jealous of the child or adolescent with the illness (who is the center of their parents’ attention) and also may be confused about why their sibling is acting strangely. It’s important for parents to find simple ways to explain that their sibling is having some problems and that they’re seeking help from a counselor, doctor, or social worker to try to deal with them. Depending on the well sibling’s age, the message can even be more explicit and say that something is wrong with her brother’s brain (see the “Breaking the News to the Family” section, earlier in this chapter).
For example, the person with schizophrenia may be missing school, and the well sibling may feel jealous, resentful, or simply confused as to why the parents are allowing this to happen. Young children have an acute sense of fairness and are aware when they aren’t being treated equally.
In cases like this, it’s important for the parents to sit down with the well siblings and explain that not going to school is not acceptable, in general, but that their sibling is unable to go because he’s sick. Also offer some words of encouragement — for example, saying that you hope that the child with mental illness will be feeling well enough to return to school after some weeks, months, or whatever and that you’re happy that the well child is able to attend school regularly.
Don’t saddle older siblings with more responsibility than they can handle. Although they may feel good about assisting their caregiver parents and may be very helpful, they shouldn’t be overwhelmed with responsibilities beyond their years.
Children are likely to identify more closely with an ill sibling who is of the same sex and close in age. Some well siblings are more likely to be adversely affected than others because they’re more sensitive, by temperament.
Sometimes well siblings are teased by other children because their ill sibling acts strangely or looks different. This can be very painful — but particularly during adolescence when there is so much emphasis on everyone conforming to their peers. Be alert to any signs of bullying or teasing of the ill or well siblings in your family so you can discuss or role-play strategies for handling them. Also be alert for any signs of depression.
Always be willing to answer questions and encourage your children to ask them.
Dealing with sibling fears
One of the most frightening fears of siblings is that the same thing will happen to them. Given that they share the same genetic pool and environment, their fears aren’t totally unfounded (see Chapter 2 for information on the genetics of schizophrenia). The child or adolescent may also be reluctant to discuss such fears with an already overburdened parent. If this is the case, it often helps for the well child to see a mental health counselor for support and reassurance. Sometimes, this can be handled by a guidance counselor or school psychologist in the child’s school. Before you take the chance, speak to the person yourself to make sure she’s up to the job.
Because schizophrenia causes ripples throughout a family, share information with your child’s teacher or school administration as appropriate and demand their assurance that it’ll be kept confidential.
Older well siblings share some of the same concerns as older parents. They wonder what their roles and responsibilities will be — emotionally, financially, and so on — when their parents die. Will they always have to care for the person with schizophrenia? Parents shouldn’t pressure or draft a well sibling into service for their ill relative. Each sibling needs to determine the extent of their involvement on their own.
As they embark upon careers and move to independence, some well siblings will follow the model set by their parents and become active caregivers of their siblings. In fact, many become healthcare professionals. Others may decide that they need to leave their sibling with mental illness behind. It’s very common for well siblings to enter helping professions as a way to give back less directly. Open discussions, family meetings, or meetings with mental-health professionals can help siblings allay these anxieties — some of which may be valid and others of which aren’t — and to make considered decisions about caregiving.
When a Spouse or Partner Has Schizophrenia
Any type of serious problem — medical, financial, legal — can create a wedge between spouses or life partners. This is especially true when one partner is diagnosed with a serious mental illness like schizophrenia. Although it’s far more common for schizophrenia to surface in younger adults, the symptoms can become manifest when people are older, before or after they marry.
Because men with schizophrenia become ill earlier than women, they’re less likely to marry than are women. In fact, only about one in four men with schizophrenia ever marries. Women are more likely to marry — some reports suggest that as many as 70 percent of them do. Unfortunately, separation and divorce rates are higher among people with schizophrenia than among the general population, for both sexes.
The impact of schizophrenia on a marriage depends on the severity of the illness, its duration, its responsiveness to treatment, and the ability of the two partners to communicate and cope.
Considering whether you can still be a couple
Schizophrenia can challenge many aspects of a partnership. Depending on the severity of the illness and whether the symptoms ebb and flow, a spouse or partner with the illness may have a hard time maintaining emotional intimacy, providing financial stability, or participating in social events. The well partner may feel shackled with responsibility as the primary caregiver and breadwinner for everyone in the family, including children, and may feel more like a parent than a spouse or partner.
Many spouses and partners, because of religious or spiritual reasons, or out of pure love and admiration, have met these challenges and provide ongoing support to their spouse. The relationship may be different than many more conventional ones, but both partners may say that they would never trade places with anyone else for a moment.
Well partners should make every effort to build upon the strengths of their mate, allowing the individual to handle any responsibilities the person is capable of. For example, if a wife is working full-time and her ill husband is left at home, he should pitch in with childcare and some of the household chores. The couple should also try to engage in some normal activities — going out to dinner together or going to a movie. The well partner should also make sure that children show equal respect for both parents.
Helping your kids understand what’s happening
Children need to be given age-appropriate information about their parent’s illness. They probably already realize that something is wrong with their parent; she may act differently than other mothers, or he may not go to work like other fathers. In some cases, there is an unusual role reversal where even very young children begin to “parent” their parents.
Other times, children don’t realize that something is wrong because they think that everyone else’s parents are “quirky” as theirs, because their experience outside the home is so limited. They may mistake symptoms for an unusual personality type (for example, a drama queen). Or they simply may be aware that something is wrong, but be unable to articulate their fears and concerns.
Younger children
When children approach school age, they may find that other kids tease them about their parent’s odd behaviors or dress. As soon as children are old enough to understand, they need to be told that their parent has a problem with his thoughts, emotions, or behaviors; that their parent still loves them very much; that their parent is doing the best job possible; and that the well parent will make sure they’re safe and well taken care of.
The well spouse also needs to make sure that the parent with schizophrenia is truly able to parent and manage the stresses that childcare entails. Another relative may have to step in to help with childcare, homework, grocery shopping, or carpooling when the illness is at its worst.
If you have any concerns about neglect, abuse, positive symptoms, or illicit substance use that are affecting a child, bring those concerns to the attention of your loved one’s doctor immediately or to an appropriate social services agency if there is imminent danger.
Older kids
As children become adolescents and young adults, they may begin to feel angry or bitter about what they may have missed because of the illness. They may feel that they weren’t properly parented, that the illness limited their interactions with other children, or that their family never had traditional celebrations or vacations like other families. They may have been cheated out of a part of their childhood or told lies that now lead them to mistrust.
They may also worry about whether the same thing — experiencing the symptoms of schizophrenia — will someday happen to them. Even before these signs become evident, and in the absence of adjustment problems, it’s helpful to find a mental-health counselor to help the young person come to grips with the complex challenges of having a parent with schizophrenia.
Working Collaboratively with Professionals
Unfortunately, even some healthcare practitioners view families as part of the problem rather than part of the solution. Old theories die hard; they blame families for the illness or for exacerbating its symptoms. As a result, these doctors, psychologists, social workers, or other mental-health workers may limit communication with family members or fail to listen to them (which means they don’t benefit from the information only families can provide).
It’s extremely useful for professionals to receive feedback from family members (in addition to the person with schizophrenia) about how the person is functioning in real life, outside of the office setting where the individual is only seen for a relatively brief period of time. This will help a psychiatrist more accurately determine whether medications are working, whether side effects are emerging, and determine when changes in medications or dosing are in order.
Don’t wait until you’re asked to become involved. Family members need to be proactive in communicating that they want to participate as a member of the treatment team:
1. Ask for the name of the person who’s responsible for your loved one’s care.
2. Request an initial meeting with that person.
3. Indicate that you have valuable information about your loved one’s history of symptoms and treatments, what worked and what didn’t, which you’re happy to provide.
4. Make sure that you come away from your initial meeting with a clear understanding of your loved one’s diagnosis, plan of treatment, and prognosis, even if you have to be very firm in making the request to ensure that you do.
5. Find out how the professional would like you to communicate with each other on an ongoing basis.
If the professional is reluctant to provide you with information and hides behind the mask of confidentiality, ask your loved one to sign a release providing his consent to have the doctor communicate with you. Even if your loved one is unwilling to provide consent, there is no breech of confidentiality in your providing information to the doctor (see Chapter 14).
Planning for the Future
One of the most persistent themes we hear from families is their worry about what will happen when they’re gone. This is extremely difficult because it means facing one’s own mortality and the fear of possibly not living long enough to see your loved one reach the stage of recovery you had hoped for.
As parents age, their energy, abilities, and resources to care for a relative with mental illness may diminish. They may be entering a time of life when they begin developing chronic health problems of their own. Living on fixed incomes, they may also have less funds available to support their loved one with schizophrenia.
If you have a relative with a serious, long-term, and disabling illness of any kind, including schizophrenia, you need to plan for the future. A number of nonprofit organizations assist families in planning for health insurance, powers of attorney, guardianship, healthcare proxies, supplemental needs trusts, housing, and other critical legal and financial issues that need to be addressed. Depending on the family, parents, grandparents, siblings, or children may be the ones involved in future care planning (see Chapter 7).
NAMI has been actively involved for many years in developing Planned Lifetime Assistance Network (PLAN) programs to meet the needs of families with adult children. Currently there are 23 such programs in operation in 18 states.
