Caregiving When Your Loved One Has a Severe Mental Illness

Most people become caregivers when their loved one suffers a physical injury or illness and/or when their loved one becomes cognitively impaired. Sometimes, however, a caregiver needs to step in to provide assistance to a loved one who suffers from a severe mental illness

What Is a Severe Mental Illness?

A severe mental illness usually involves some form of psychosis or break from reality. A severely mentally ill person may see or hear things that aren’t really there (hallucinations) or cling to fixed, untrue, often paranoid, beliefs (delusions). People with schizophrenia suffer from these symptoms, and people with bipolar disorder or major depression may also have psychotic episodes.

Occasionally, people are considered severely mentally ill even if they don’t experience psychosis. Anxiety disorders, personality disorders, and eating disorders can all be extremely disabling and even life threatening.

To be considered severe, a mental illness must persist–or resolve and reoccur regularly–for two or more years with poor response to treatment, if the patient accepts treatment is accepted.

Additionally, a mental health professional must determine that the person has a Global Assessment Functioning (GAF) score of less than 70, which implies moderate to severe difficulty functioning in every day life.

Mental Illness – A Different Kind of Adult Caregiver Experience

People who act as caregivers for someone with a severe mental illness face stressors other caregivers may not. First, both the caregiver and the person needing care tend to be younger than those in other caregiving situations. This often means that the caregiver is employed during the days. It may also mean that he or she is not emotionally equipped to handle the strain of caregiving.

The care required for a person with mental illness is more likely to be episodic than continuous, as periods of distressing psychiatric symptoms tend to wax and wane. A person with bipolar disorder, for instance, might go many months on an even keel before spiraling into a state of extreme depression or mania.

It is also harder for the caregiver to get medical information regarding the loved one’s care. This is because Federal laws, most notably HIPAA, mandate that healthcare providers keep a patient’s private medical information strictly confidential. If the patient is not a risk to self or others and  has not given a healthcare professional permission to speak with the caregiver, the caregiver may be completely in the dark about the treatment–or lack thereof–the patient is receiving.

When dealing with mental illness, caregivers are also more likely to encounter difficult behaviors on the part of the patient, such as noncompliance with treatment regimen or substance abuse. A person with a substance abuse problem and a mental illness is said to have a dual diagnosis. Dually diagnosed patients are common, but they can be especially challenging to treat.

Treatment Options

People with a severe mental illness have several treatment options, however they may choose not to accept any kind of treatment. Unless the person poses an immediate risk to self or others, he or she has the right to refuse treatment, a fact that is distressing to caregivers trying to get help for their loved ones.

Outpatient treatment is the preferred method of treatment for people with mental illness. It involves regular visits with a therapist, medication, support groups, and sometimes a case manager to assist the person with life skills such as budgeting or finding and keeping an apartment.

Day programs are available at many mental health centers. They are a good solution for a severely mentally ill person who can’t be alone and whose caregiver works during the day. They offer activities, medication management, substance abuse support, and life skills training.

An inpatient hospitalization involves an admission to a psychiatric hospital or to a psychiatric unit of a medical hospital. Due to strict insurance guidelines, a patient is not usually hospitalized unless he or she is considered a danger to self or others. Someone who is deemed to be at risk and who refuses hospitalization may be court-ordered to stay in the hospital for a period of evaluation and treatment.

Finally, a group home is a homelike setting where a small number of people with similar problems live under the supervision of one or more "house parents." Group homes are a good option for people with persistent psychiatric symptoms who function best in a structured environment.

Suicide Awareness

It is a sad fact that some people with severe mental illness commit suicide. This can send the caregiver into a spiral of grief, guilt, and shame.

If your loved one dies at his or her own hand, seek help and support for yourself immediately. Remember that it is not your fault. Just like some physical illnesses inevitably end in death, some mental illnesses are also terminal. No matter how hard you try or how many times you intervene, you may not be able to prevent your loved one from committing suicide if he or she is determined to do so.

Support for Caregivers

If you’re caring for a loved one with a severe mental illness, you don’t have to face your battle alone. The National Alliance on Mental Illness (NAMI, 1-800-950-6264) can give you information on your loved one’s condition and ideas on how best to help manage it. NAMI also offers support groups throughout the United States.