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Family Caregiving Through Psychosis

Steps to take to help loved ones and friends get the mental health help they need

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Caregiving for people with mental illness is not discussed as publicly as other types of caregiving, like that for cancer or dementia. Perhaps it’s a fear of stigma or wanting to protect a loved one’s privacy, but this form of “quiet” caregiving can leave family caregivers without the guidance and resources they need in times of crisis.

​One of the hardest things to handle for a caregiver is when a loved one’s mental illness morphs into a more serious psychiatric emergency called psychosis. Psychosis is defined by the National Institute of Mental Health as “a collection of symptoms that affect the mind, where there has been some loss of contact with reality.”

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While psychotic episodes are not common — according to the National Alliance on Mental Illness (NAMI), 3 out of every 100 people will experience a psychotic episode in their lifetime — if an episode occurs once, there’s a 50 percent chance that it will happen again in the person’s lifetime, meaning that the patient and the caregiver need to be prepared for possible future events.

Psychosis often presents itself suddenly with attempts at self-harm, altered perceptions of reality, drastic changes in mood and behavior, or delusions and hallucinations. It can be uncharted territory for the caregiver and a chaotic time trying to help the person in an emergency.

What triggers psychosis?

Many things can trigger a psychotic episode. Substance abuse, trauma, physical illness or injury, or genetics could play a role. If the person in crisis doesn’t already have a diagnosis that points to the cause of the psychotic episode, then seeking medical treatment that leads to a diagnosis is going to be necessary. But getting the person stabilized during an emergency is the first priority.

Close family and friends are often the first to spot changes in a person’s behavior. If there are signs of delusion or hallucinations, get help as soon as possible. If you can, take the person in crisis to be medically examined. By seeing their attending physicians (and counselors or psychiatrists, if they’re already in treatment), they’ll have the benefit of medical guidance for the next steps. Believe it or not, something as simple as a urinary tract infection can induce symptoms that appear as psychosis, and once treated, most patients make a full recovery.

If there’s a true emergency — violence against others or self-harm — alert the authorities. As much as you want to protect your loved one, you need to safeguard your own well-being and that of others. Call 988 or 911; 988 is a crisis response line that works closely with emergency services if the situation needs more than a behavioral response team. First responders deal with psychiatric emergencies every day, and they can assist with de-escalation and transport for further evaluation and treatment. Be sure to explain in your initial call that the person is having a mental health crisis, which will help the responders assess and manage the situation.

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If the person in crisis won’t accept help voluntarily, you may have to petition a court for an involuntary commitment. This is a period (which varies by state) during which the person having the psychiatric emergency is held in a psychiatric hospital for evaluation and stabilization. Be prepared that discharge from the facility could happen within a matter of days and that the patient may need more intervention and treatment after this initial period.

Have legal documents in hand

Hopefully, your loved one in crisis will have already completed their legal documents — a health care surrogate designation and power of attorney. If you are the person named in these documents, supply them to the treating physicians/facility, which should make it easier for you to speak with the medical providers and come up with a plan. If the patient is unable to provide consent to treatment or is judged to be lacking legal capacity, those documents will allow the person they appointed to step in and take the reins until the patient can participate more fully in their own care.

Things can get tricky if your loved one does not have their legal documents in order. If your family member or friend is in the throes of an ongoing mental health crisis, you may have to petition a court for an incapacity determination to be appointed as their guardian on an emergency or ongoing basis. Guardianships can be limited to giving the caregiver seeking help the legal authority to make decisions about the patient’s property (their money) or their personal matters (such as providing medical, mental and personal care services and deciding where the patient will reside during the guardianship period). With a guardianship, the caregiver may arrange for ongoing inpatient or outpatient medical services that will assist in stabilization, diagnosis and an ongoing action plan for treating the cause of the psychotic episodes.

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There are steps you, as a caregiver and concerned friend or family member, can take to support ways to maintain health and prevent a future crisis. Alison Fuhr, a board-certified psychiatric mental health nurse practitioner in St. Petersburg, Florida, recommends that all her clients and their caregivers develop both a crisis prevention plan and a crisis plan. This includes:

  • Talking about the client’s triggers/stressors and encouraging them to ask for help before the stressors culminate in a crisis.
  • Learning what the client wants in times of stress — calm music, breathing, someone to listen, hug/physical touch, going for a walk, someone to problem-solve with — so the caregiver knows best how to help. Apps such as StayAlive are a good resource for help organizing this information.
  • Meeting with their medical provider about medications that may help in an emergency situation, should one arise.
  • Organizing information in one place so that it is readily accessible. This should include the National Crisis Hotline (988), a psychiatric provider’s phone number/contact information, a preferred hospital or treatment center, and a list of current medications, allergies and diagnoses.
  • Ensuring that the individual with the mental illness has a release of information (ROI) form for the caregiver on file with their counselor and psychiatric provider. This allows the medical team to communicate with the caregiver.

“Ultimately, we want to prevent our clients and loved ones from suffering a crisis, while understanding that sometimes this cannot be avoided,” explains Fuhr. “In those cases, being prepared with a plan to navigate this stressful event can help both the caregiver and the person in crisis feel supported and guided on a clear path to recovery.”

In my work as an attorney, I also recommend that my clients with a history of psychotic episodes and their caregivers take the following steps.

  • Ask the mental health patient or caregiver to write a journal of events (reoccurring or new symptoms; how the patient is feeling before, during and after treatments; medication adjustments).
  • Keep people who are close to the patient in the loop so they can help if a crisis happens again. 
  • Take action when the patient recovers to a state where they can understand and wish to make legal documents, and create advance directives (including a psychiatric advance directive to let doctors know what treatment the patient would agree to during a psychiatric emergency).
  • Gather a support system. Organizations like NAMI (the National Alliance on Mental Illness) can direct the patient and caregivers to support groups, diagnosis-specific information, resource libraries, and webinars or podcasts on mental health.

Those steps are all part of making a recovery plan that would be a future road map for a person who has experienced a psychotic episode and their caregivers. To the extent possible, the patient should participate and direct their own present and future care. If they can’t participate, the caregiver should take as many of those steps as practical. Having a plan of action is the best way to support your loved one’s recovery process and long-term well-being.

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