Caring for a Family Member with Schizophrenia
Schizophrenia is a life-altering disorder for sufferers and for their families. Providing care for a loved one with schizophrenia requires knowledge, patience, resilience, and compassion, and family members who dedicate themselves to this mission must be prepared for the many challenges they will face.
When Someone You Love is Diagnosed with Schizophrenia
When someone you love is diagnosed with schizophrenia, it stirs up a complex mix of emotions. On the one hand, there is fear and uncertainty about what the future holds, for everyone in the family. You may go through denial, anger, grief, depression, and a period of existential dread, all of which are natural and expected when a potentially disabling neurobiological disorder intrudes into your lives.
If you ask a mental health professional, does schizophrenia run in families, you will find out the schizophrenia genetic risk is very real, and that can bring up a whole new set of feelings. If the person diagnosed with schizophrenia is a son, daughter, or grandchild, you may feel guilty for passing on the genes that made them more vulnerable to the disorder. And if you are a brother, sister, cousin, niece, or nephew, you may be stricken with worry about your own children’s futures.
But having an official diagnosis can also bring a degree of comfort. For a long time the signs of mental illness were there, and now you can finally put a label on your loved one’s frightening symptoms and mysterious behavior.
While it’s something no one would ever wish for, a diagnosis of schizophrenia isn’t the end of the world, for you or for the person diagnosed. It is, however, an enormous challenge for everyone in the family, possibly the most difficult one you’ll ever confront. It’s one your loved one must prepare for and one you must prepare for as well.
Helping someone with schizophrenia requires knowledge, commitment, patience, resilience, dedication, perseverance, compassion, responsibility, consistency, and repeated acts of love, and if you are prepared to offer all of them you can have a tremendously positive influence.
But great intentions are not enough. Living with someone with schizophrenia is a unique experience, and no matter how prepared you think you are you will be tested, time and time again.
Planning an Effective Schizophrenia Care Program
People with schizophrenia may need partial or full hospitalization during a crisis, and if they suffer from a substance abuse issue (as many schizophrenia patients do), it’s important they get integrated treatment after being diagnosed.
Many individuals only receive treatment for schizophrenia on an outpatient basis, which means the majority of schizophrenia sufferers will rely on the physical, emotional, and psychological support of family members to help them manage their disorders and continue their lives. Nevertheless, most schizophrenia sufferers will benefit from at least some time in in a residential treatment program, where they can concentrate completely on healing in a recovery-focused environment. This is an excellent way to set a sustainable foundation for long-term wellness.
Before an outpatient treatment program begins, you should consult with all the treatment professionals involved in your loved one’s care: psychiatrists, addiction therapists (if there’s been substance abuse), live-in nurses, hired assistants, the family physician, and those who manage family therapy or peer support groups. You should learn as much as you can about the specifics of the treatment program, and about the symptoms of schizophrenia and how their presence or absence can indicate if treatment is actually working.
People with schizophrenia must attend to their own recovery, and no one can do the work for them. However, if you know what they’re expected to do you’ll be able to monitor their progress and offer gentle reminders to make sure they do what they must do to get better.
You can also contribute to their recovery by helping them get to their medical appointments and schizophrenia support group meetings on time, and by making sure they take their medications as prescribed. In addition, be prepared to offer them assistance with cooking, cleaning, going to the store, paying bills, and other practical matters that could compromise their health and personal welfare if not properly addressed.
Creating a Supportive Healing Environment
Knowing everything there is to know about the treatment plan of a schizophrenia sufferer under your care is important.
But that won’t help you cope with the reality of a neurobiological disorder when you must deal with it on a daily basis. It won’t help you choose the right words, behavior, and attitude to reinforce rather than undermine the efforts of your loved one to regain their lost freedom and independence.
To foster a healing and recovery environment that feels safe, comfortable, and supportive, you should:
- Respect your loved one’s need for peace and tranquility. This means no loud music or television, and the elimination of other similar distractions. But it also means no arguing or interpersonal conflict among those sharing the household with the schizophrenia sufferer.
- Keep schedules consistent and predictable. Everything that happens in the home should be planned according to a regular routine. This includes meals, bedtimes, waking times, daily chores, visitations from family members, and so on. People with schizophrenia do much better when they know what to expect and when there are no surprises.
- Be clear, precise, and straightforward in your communication. Schizophrenia is a condition that can affect focus, concentration, and memory, and the schizophrenia sufferer may become frustrated by requests that are overly complex or challenging. Keeping it simple will reduce stress and eliminate misunderstandings.
- Be kind and encouraging, but don’t be patronizing. Love and compassion are potent forces for change, but sincerity is essential. You shouldn’t talk to, or treat, teens or adults with schizophrenia like children. They will notice it and may resent it.
- Keep your negative emotions out of it. Living with someone with schizophrenia is hard, and there may be times when you’re frustrated, exhausted, or just in general at your wit’s end. But this is not the schizophrenia sufferer’s problem, and you shouldn’t dump your emotional baggage on them. If you need to get away for a while just do it, and let someone else take over until you’ve regained your bearings.
- Put up a steady and unified front. Whether living onsite or visiting occasionally, family members who provide care and sustenance should carefully coordinate their actions and behavior. If there are disagreements, they should he handled diplomatically and outside the presence of the person with schizophrenia.
- Don’t react with excessive emotion to anything that happens. Your empathy and compassion are admirable. But you must maintain healthy personal boundaries and not allow yourself to be overly affected by what the schizophrenia sufferer says or does, or by their difficulties. Avoid excessive praise and criticism, don’t express anger, disappointment or frustration openly, and don’t let anxiety or depression develop without seeking psychological assistance.
While attending to the needs of the person with schizophrenia, you must be careful to protect your own health and wellbeing as well. Those providing care for someone with a schizophrenic disorder shouldn’t be asked to neglect their own physical, emotional, and psychological needs, and if you are overwhelmed by your responsibilities it’s definitely time for a break.
When care is provided for, schizophrenia family support should be divided fairly and evenly between everyone involved, so that no one is overburdened or left to play the role of hero.
Preparing for a Crisis
Dealing with schizophrenia (especially paranoid schizophrenia) is a challenge during the best of times. But you must be prepared for the worst of times as well.
Sudden outbreaks of the positive symptoms of schizophrenia (hallucinations and delusions) can put people with schizophrenia and their caregivers in serious jeopardy. You should be prepared to act swiftly and appropriately when such symptoms manifest, to make sure the situation doesn’t escalate.
A crisis could be imminent if you observe any of the following from a person with schizophrenia disorder:
- Extreme agitation and restlessness
- Inability to sleep
- Ritualistic or obsessive behaviors
- Apparently unprovoked emotional outbursts
- Extreme paranoia or fear
- Speech that is unintelligible or somehow disconnected with reality
- Hostile reactions, threats, and violence
When you have reason to suspect your loved one is having a psychotic episode, you must remain calm and under control. Give them plenty of space, don’t make eye contact for excessive periods of time, or do anything else that might seem threatening or aggressive. If they make requests, comply with them (if they’re reasonable) and don’t raise your voice or start an argument.
Also, you shouldn’t respond to their delusions or hallucinations by trying to convince them they aren’t real. That won’t work with someone under the influence of powerful paranoid schizophrenia symptoms, and it could even provoke a dangerous response.
Consult with your loved one’s counselors and other medical personnel ahead of time about who to contact in the case of such an emergency. Always wait for assistance to arrive, and never attempt to take your loved one anywhere on your own.
Normally, a psychotic episode would be considered a medical emergency requiring hospitalization followed by inpatient care at a specialized treatment facility for some period. But if the schizophrenia sufferer’s behavior is overly aggressive or threatening a call for police assistance might be necessary.
Schizophrenia is a Family Affair
Helping someone with schizophrenia can be stressful, and it can disrupt family relationships. This can lead to anger and resentment between family caregivers or directed toward the person suffering from the illness.
When someone suffers from schizophrenia, family support can be vital to a healthy recovery. However, those who are providing care must support and protect each other as well. Mental health support groups can help people with schizophrenia, but they can also help the loved ones of schizophrenia sufferers cope with the immense life challenges that inevitably accompany their commitment to service.
The National Alliance on Mental Illness (NAMI) and the Schizophrenia and Related Disorders Alliance of America (SARDAA) both sponsor peer groups for the relatives and close friends of people with schizophrenia. These schizophrenia support groups (or similar ones sponsored by other community health organizations) are available in every state and in most cities across the country, and they are a valuable source of practical advice and moral support for family members of schizophrenia sufferers who need to know they’re not alone.