Category / Just the Facts

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by karentwinem

Relapse Prevention: Know the Warning Signs

This month is Mental Health Awareness Month. Some of us are aware of mental illness every waking hour because we have a loved one dealing with it. We dread relapses. To help, I’ve collected information from NAMI, Mental Health America and my own reading/experience.

Recognizing the Early Warning Signs

Mental illness, especially bipolar disorder, schizophrenia and clinical depression, is usually episodic. The symptoms vary over time. When your loved one experiences another episode, it is commonly called a relapse.

Please note: Persistent symptoms that continue despite the stabilization of the illness are not signs of a relapse, but are treatment-resistant symptoms.  If the symptoms get worse, it’s a relapse.

Before the relapse, people often experience changes in their feelings, thoughts and behaviors. These are early warning signs. Studies indicate between 50% and 70% of people experience early warning signs over a period of one to four weeks before a relapse.

Looking for early warning signs allows you to start working with your loved one and his treatment providers to minimize the setback. Because you are the most frequent contact with your loved one, you are the one who sees the warning signs. The ill person will not be able to see them.  This blog post explains why.

Common Warning Signs

Each person has their own specific signs or “relapse signature.” But some warning signs are common, including:

  • Feelings of tension, anxiousness or worries.
  • More irritability.
  • Increased sleep disturbance (hearing them up in the night).
  • Depression.
  • Social withdrawal (more extreme, not even leaving his room to eat).
  • Concentration problems (taking longer to do tasks, having trouble finishing tasks, having trouble following a conversation or TV show).
  • Decreasing or stopping medication or treatment (refusing to go to the case manager or doctor, skipping the vocational program).
  • Eating less or eating more.
  • Excessively high or low energy.
  • Loss of interest in doing things.
  • Loss of interest in the way he or she looks / poor hygiene.
  • Being afraid of “going crazy.”
  • Becoming excessive in religious practices.
  • Feeling bothered by thoughts that will not go away.
  • Feeling overwhelmed by demands.
  • Expressing worries about physical problems.

Most common relapse indicators for schizophrenia:

  • Restless or unsettled sleep.
  • Nervousness or tension.
  • Having a hard time concentrating.
  • Isolation.
  • Feeling irritable.
  • Having trouble taking care of routine things.
  • A lack of energy.
  • Feeling sad or depressed.
  • Feeling confused.
  • A change in appetite.

Most common relapse indicators for bipolar disorder:

  • Disturbed or lack of sleep.
  • Talking quickly and more often than usual.
  • Acting reckless.
  • Feeling very tired.
  • Feeling very depressed.

An Off Day or the Start of a Relapse?

Everyone can have an off day. You can feel down in the dumps, with no energy. Or you can seem a little manic.  If a person has had mental health problems, it’s important to consider whether they are having an off day or starting a relapse.

Early warning signs are:

  • A cluster of changes.
  • Happening together.
  • Lasting over a period of time.
  • Gradually getting worse.
  • Following the same pattern as before.

Your Loved One’s Relapse Signature

Think about the last time your loved one got worse. If you keep a journal, look at what you wrote. It helps to think about:

  • What was the time of year?
  • Did your loved one say how they were feeling physically?
  • How was the mood?  The level of concentration?
  • Did any unusual changes in behavior take place in the weeks before the last relapse?
  • Did your relative do things that seemed “out of character” before the last relapse?
  • Have the same behaviors preceded other relapses?

Thinking about what was happening in the person’s life when you start to notice these changes can help too. 

Next time we’ll talk about what to do when your loved one shows signs of relapse.

hand coming up from water
by karentwinem

Dealing With Depression

Depression and anxiety are now wide-spread problems stemming from the coronavirus pandemic. But caregivers of people with mental illness have often suffered from these issues.

On February 21, 2021, the New York Times published an American Psychological Association poll that said 74 percent of psychologists are seeing more patients with anxiety disorders than before pandemic. Sixty percent were seeing more people with depression. Time Magazine also published this on the increase in depression.

First the good news.

Almost all depression and anxiety conditions are treatable.  But there is no magic fix. These are very complex conditions.  Depression and increased anxiety also can be signs that a person with a more severe diagnosis, such as bipolar disorder or schizophrenia, is heading into an episode. Let’s take a look at depression first.

Depression … what it is and who gets it

Depression can result from a combination of genetic, biological, environmental, and psychological factors, the Veterans Administration website reports. Trauma, loss of a loved one, a difficult relationship, or any stressful situation may trigger depression, but depression can also occur without an obvious trigger.

According to the National Alliance on Mental Illness, an estimated 16 million American adults—almost 7% of the population—had at least one major depressive episode in a non-pandemic year. Women are 70% more likely than men to experience depression. And young adults aged 18–25 are 60% more likely to have depression than people aged 50 or older.

Depression is frequently under-diagnosed, however. Psychologists estimate that only about one-third (35%) of people with depression ever see a mental health professional.

The Veterans Administration reports that military personnel are prone to depression, at least partially as a result of exposure to traumatic experiences, including witnessing combat and separation from family during deployment or military trainings. Data shows it is five time higher among active duty soldiers and even higher among the previously deployed solders.

Some will only experience one depressive episode in a lifetime, but for most, depressive disorder recurs.

Without treatment, episodes may last a few months to several years.

Symptoms of Depression

Depression can present different symptoms, depending on the person. But for most people, depressive disorder changes how they function day-to-day, and typically for more than two weeks. Common symptoms include:

  • Changes in sleep
  • Changes in appetite
  • Lack of concentration
  • Loss of energy
  • Lack of interest in activities
  • Hopelessness or guilty thoughts
  • Changes in movement (less activity or agitation)
  • Physical aches and pains
  • Suicidal thoughts

We are not capable of diagnosing depression, but we can use the SIGECAPS diagnostic tool to determine whether someone should see a doctor. If a person has five or more of these 8 symptoms every day for two weeks, they are likely struggling with a major depression.

SIGECAPS Diagnostic Tool

  • SADNESS / SLEEP INTERRUPTION
  • INTERESTS … lost interest in things that used to enjoy
  • GUILT … ruminating over past perceived failures, character flaws, mistakes
  • ENERGY … noticeable lack of it
  • CONCENTRATION … inability to
  • APPETITE … could be eating more or eating less
  • PSYCHOMOTOR ABNORMALITIES … retardation (slowed speech, slowed movement, shuffling gait, collapsed posture, low voice volume, monotone speech, lack of facial expressions) or agitation (pacing, wringing hands, removing and putting on clothing over and over,
  • SUICIDAL … actively (with a plan), passively (stopped caring whether they live or die) and para (cutting or overdoses that the person knows won’t kill them … a cry for help)

Causes of Depression

Depression does not have a single cause. It can be triggered by a life crisis, physical illness or something else. But it can also occur spontaneously. Scientists believe several factors can contribute to depression:

  • Trauma. When people experience trauma at an early age, it can cause long-term changes in how their brains respond to fear and stress. These changes may lead to depression.
  • Genetics. Mood disorders, such as depression, tend to run in families.
  • Life circumstances. Marital status, relationship changes, financial standing and where a person lives influence whether a person develops depression.
  • Brain changes. Imaging studies have shown that the frontal lobe of the brain becomes less active when a person is depressed. Depression is also associated with changes in how the pituitary gland and hypothalamus respond to hormone stimulation.
  • Other medical conditions. People who have a history of sleep disturbances, medical illness, chronic pain, anxiety and attention-deficit hyperactivity disorder (ADHD) are more likely to develop depression. Some medical syndromes (like hypothyroidism) can mimic depressive disorder. Some medications can also cause symptoms of depression.
  • Drug and alcohol abuse.  About one-third of people with substance abuse problems also have depression. This requires coordinated treatment for both conditions, as alcohol can worsen symptoms.

Treatments for Depression

After an assessment rules out medical and other possible causes, a patient-centered treatment plans can include any or a combination of the following:

  • Psychotherapy including cognitive behavioral therapy, family-focused therapy and interpersonal therapy.
    • Cognitive behavioral therapy (CBT) has a strong research base to show it helps with symptoms of depression. This therapy helps assess and change negative thinking patterns associated with depression. The goal of this structured therapy is to recognize negative thoughts and to teach coping strategies. CBT is often time-limited and may be limited to 8–16 sessions in some instances. 
    • Interpersonal therapy (IPT) focuses on improving problems in personal relationships and other changes in life that may be contributing to depressive disorder. Therapists teach individuals to evaluate their interactions and to improve how they relate to others. IPT is often time-limited like CBT.
    • Psychodynamic therapy is a therapeutic approach rooted in recognizing and understanding negative patterns of behavior and feelings that are rooted in past experiences and working to resolve them. Looking at a person’s unconscious processes is another component of this psychotherapy. It can be done in short-term or longer-term modes. 
  • Medications including antidepressants, mood stabilizers and antipsychotic medications.
  • Exercise can help with prevention and mild-to-moderate symptoms.
  • Psychoeducation and support groups
  • Brain stimulation therapies can be tried if psychotherapy and/or medication are not effective. These include electroconvulsive therapy (ECT) for depressive disorder with psychosis or repetitive transcranial magnetic stimulation (rTMS) for severe depression.
    • Electroconvulsive Therapy (ECT) involves transmitting short electrical impulses into the brain. ECT does cause some side effects, including memory loss. Individuals should understand the risks and benefits of this intervention before beginning a treatment trial.
    • Repetitive Transcranial Magnetic Stimulation (rTMS) is a relatively new type of brain stimulation that uses a magnet instead of an electrical current to activate the brain. It is not effective as a maintenance treatment.
  • Light therapy, which uses a light box to expose a person to full spectrum light in an effort to regulate the hormone melatonin.
  • Alternative approaches including acupuncture, meditation and nutrition can be part of a comprehensive treatment plan, but do not yet have strong scientific backing.

Major Depressive Disorder with a Seasonal Pattern

Major Depressive Disorder with a Seasonal Pattern (formerly known as seasonal affective disorder, or SAD) is characterized by recurrent episodes of depression in late fall and winter, alternating with periods of normal mood the rest of the year.

Researchers at the National Institute of Mental Health were the first to suggest this condition was a response to decreased light and experimented with the use of bright light to address the symptoms. Scientists have identified that the neurotransmitter serotonin may not be working optimally in many people who experience this disorder.

The prevalence of this condition appears to vary with latitude, age and sex:

  • Prevalence increases among people living in higher/northern latitudes.
  • Younger persons are at higher risk.
  • Women are more likely than men to experience this condition.

Symptoms

This disorder’s most common presentation is of an atypical depression. With classic depression, people tend to lose weight and sleep less. This condition is the kind of atypical depression often seen in bipolar disorder—people tend to gain weight and sleep more.

Although not everyone experiences all the following symptoms, the classic characteristics of Major Depressive Disorder with a Seasonal Pattern include:

  • Hypersomnia (or oversleeping)
  • Daytime fatigue
  • Overeating
  • Weight gain
  • Craving carbohydrates

Many people may experience other symptoms as well, including:

  • Decreased sexual interest
  • Lethargy
  • Hopelessness
  • Suicidal thoughts
  • Lack of interest in usual activities and decreased socialization

Diagnosis

The key to an accurate diagnose of this condition is recognizing its pattern. Symptoms usually begin in October/November and subside in March/April. Some people begin to experience a “slump” as early as August, while others remain well until January. Regardless of the time of onset, most people don’t feel fully “back to normal” until early May.

For a diagnosis to be made, this pattern of onset and remission must have occurred during at least a two-year period, without the occurrence of any non-seasonal episodes during that same period.

This means you will not receive this diagnosis the first time you experience symptoms. If you believe you may have a seasonal depressive pattern, it’s important to pay attention to the pattern. Track your symptoms, noting when they begin and when they subside. This self-awareness can help. Mental health professionals will ask you about your observations and also your family history since mood disorders tend to run in families.

Treatment

As with most depressive disorders, the best treatment includes a combination of antidepressant medications, cognitive behavioral therapy and exercise. Unlike other depressive disorders, this condition can also be treated with light therapy. Light therapy consists of regular, daily exposure to a “light box,” which artificially simulates high-intensity sunlight.

If you know you have a seasonal pattern, ask yourself “How can I plan for this?” Because this disorder has a specific pattern, those who experience it can prepare for its arrival in the following ways, for example:

  • Exercise more toward the end of summer
  • Get into therapy around September
  • Start your lightbox in October
  • Plan a vacation to a sunny spot in January

by karentwinem

When They Don’t Think They Are Mentally Ill

One symptom of having a mental illness is … not knowing that you have a mental illness. Really.

This symptom is anosognosia … pronounced uh-no-sog-NOH-zee-uh.  It means being unaware of one’s disease, disability or defect. This is common, as many who have tried to help a loved one can tell you.

Some people who have brain-based or “mental” illness have insight.  They know they have a mental disturbance that could be an illness. They recognize they have  experiences, including beliefs and perceptions, that don’t match reality.  Because they can see this, they are much more likely to accept treatment.

People with anosognosia often don’t accept treatment simply because they don’t think they are sick.

Anosognosia affects 50 percent of people with schizophrenia and 40 percent of people with bipolar disorder.  It also can be a symptom of major depression with psychotic features.

What Causes This?

The symptom can vary over time. Sometimes people understand they are ill, and sometimes they don’t. They are not being stubborn or difficult. The same brain dysfunction that causes hallucinations and voices also causes anosognosia.

People constantly update their own mental images of themselves.  You remember that you have a sunburn or a bruise or a runny nose, so you are not surprised when you see it again. The updating process takes place in the frontal lobe.

Unfortunately schizophrenia, bipolar disorder and dementia damage the frontal lobe.  So our loved ones can lose the ability to update their self-images.

Without an update, they have an old self-image from before the illness. Since our perceptions feel accurate, they believe they are well.  They decide that our families are lying or making a mistake.  When families insist that they are right, the person with the illness may get frustrated or angry.  They may begin to avoid family and friends.

Why Is Insight Important?

Lack of insight not only causes conflict. It usually causes a person to avoid treatment. It is also the most common reason that people with mental illness stop taking their medications.  When combined with psychosis or mania, lack of insight can cause dangerous behavior.

How Can You Tell If It’s Anosognosia or Denial?

It’s likely to be anosognosia if:

  • The lack of insight is severe and persistent (lasting for months or years).
  • The beliefs (I am not sick, etc.) are fixed. They don’t change when you confront the person with overwhelming evidence.
  • You hear illogical explanations or elaborate statements that attempt to explain away the evidence of the illness.

How Can You Help Your Loved One?

Anosognosia is a delusion. We can’t talk people out of delusions.  (That’s what a delusion is: a belief in the face of contrary evidence.) So stop arguing about it.

The alternative that experts stress is listening to the person.  The LEAP method, developed by Dr. Xavier Amador, has proven quite effective in research in helping people to accept that need for treatment.

In summary, the LEAP method is:

  • Listen to your loved one. If they don’t think they are sick, find out what problems they think they do have.  Lack of sleep, for example.
  • Empathize. Let them know you understand how difficult things are.
  • Agree with the loved one on some point. Example:  Lack of sleep makes things hard.
  • Partner with the loved one, starting with solving the problem that they recognize.

The method is detailed in Dr. Amador’s book, “I’m Not Sick. I Don’t Need Help.”  Details on also available in the videos here.  They are worth watching.

 

by karentwinem

It’s National Minority Mental Health Awareness Month

The pandemic and systemic racism has caused so much angst this summer.  So it’s important to talk about National Minority Mental Health Awareness Month.

The House of Representatives started this annual observation in 2008 in honor of mental health advocate and writer Bebe Moore Campbell.

The Department of Health and Human Services is highlighting its free and accredited e-learning program: Improving Cultural Competency for Behavioral Health Professionals. This program is part of the Office of Mental Health’s Think Cultural Health E-learning courses.

Despite advances in health equity, disparities in mental health care persist. The Agency for Healthcare Research and Quality reports that racial and ethnic minority groups in the United States are:

  • Less likely to have access to mental health services.
  • Less likely to use community mental health services.
  • More likely to use emergency departments.
  • More likely to receive lower quality care.

All this adds up to poor mental health outcomes, including suicide. According to the Substance Abuse and Mental Health Services Administration (SAMHSA) and the CDC:

  • In 2017, 10.5% (3.5 million) of young adults age 18 to 25 had serious thoughts of suicide including 8.3% of non-Hispanic blacks and 9.2% of Hispanics.
  • In 2017, 7.5% (2.5 million) of young adults age 18 to 25 had a serious mental illness including 7.6% of non-Hispanic Asians, 5.7% of Hispanics and 4.6% of non-Hispanic blacks.
  • Feelings of anxiety and other signs of stress may become more pronounced during a global pandemic.
  • People in some racial and ethnic minority groups may respond more strongly to the stress of a pandemic or crisis.

 

by karentwinem

Understand the Inner Life of a Loved One With Mental Illness

Have you ever gone 24 hours without sleep? 48 hours? How did you feel?  How did you look?

Dozed off for a second, awakened with a start and didn’t know where you were?  Lost your sunglasses or car keys and no matter what you did, you couldn’t find them?   Gone driving down a road when your sense of direction got mixed up? Had a song stuck in your head that would not go away? How would you feel if that song stayed for a month or more?

Now let’s put three or more of these items together.  Say you’d hadn’t slept for three days, you heard the same music going on and on in your head, and you couldn‘t find your keys.  How would you feel?

That thought experiment gives you just a hint of the inner life of a person with mental illness. Even in remission and even when properly medicated, chronic mental illness leaves its sufferers in a devastating limbo.

Many people with mental illness are effectively cut off from the predictable, rewarding, self-fulfilling live involvements that make existence meaningful.  They suffer deeply from their inability to be competent and successful in their daily lives.

This threatens our loved ones’ psychological integrity.  It sets up a process where they feel they must protect their “core self” at all cost.

Many behaviors that result – refusing medication, rejecting family support and community programs and disrupting family life, for example – don’t make sense to us. Yet they are directly related to their struggle to maintain some dignity and self-respect in the face of stigma, failure and shame.

Psychological traumas are associated with any serious chronic illness.

 Whenever a person has a serious chronic illness …. COPD, emphysema, chronic heart disease, or a mental illness … two things happen to the sense of self.

First, they lose their protective belief that they are exempt from harm. Much of our sense of safety and willingness to take risks rests on a belief that serious harm or real trouble will never happen to us.  Young people especially still have this sense. Second, they lose their sense of a predictable, dependable future.

This results in some common defensive coping strategies.

These are self-management techniques that are basically maladaptive.  They don’t help people get what they really want, but they do provide temporary psychological refuge when confidence and self-image are taking a nose-dive.

  • Abusive criticism of others
  • Anger and attack
  • Apathy
  • Bargaining
  • Blaming others
  • Controlling or manipulative behavior
  • Defensiveness
  • Denial
  • Dependency
  • Doing nothing
  • Drug and alcohol abuse
  • Envy
  • Excessive sleeping
  • Haughtiness
  • Irritability
  • Quitting a job
  • Refusing help or services
  • Refusing medication
  • Rejection of family and friends
  • Resistance to change
  • Running away
  • Self-absorption
  • Suspicion
  • Withdrawal

From time to time in daily life, all of us will use one or more of these behaviors.  If we are criticized at work … snubbed by someone we thought was a friend … having a fight at home … we may use one of these behaviors if we feel momentarily crushed.  We complain or attack.  We “need a drink.” We get fed up and call in sick.

For us, these responses happen when we feel temporarily defeated.  We normally pull out of them quickly.  We turn to our social and personal life structure, finding comfort and reassurance.

The situation for people with mental illness is drastically different. Their social and personal life is vastly diminished. They often face poverty, stigma, disability, joblessness and social rejection. They are trapped in a runaway train going the wrong way.

The negative coping strategies become a familiar and reliable way to protect themselves from becoming even more diminished.

 

by karentwinem

Mental Illness: Chronic Illness Has Predictable Reactions

Mental illness is a chronic illness with life changing impact. Even when a person is properly medicated, in treatment and in remission, mental illness puts its sufferers in a devastating limbo.  Let’s consider what it could be like:

  • Have you ever gone without sleep for one night? 48 hours? Longer?
  • Have you ever woken up, startled and not sure where you were?
  • Have you lost your keys or your glasses and couldn’t find them?
  • Has a song been running through your head for a couple of hours?  A day? A week?

Remember how you felt in these circumstances.  Irritable, frantic or close to screaming? What if it all happened at once?

Thinking about this can give us some empathy for people with mental illness.  Furthermore, many people who have brain-based mental illness are effectively cut off from predictable and rewarding life experiences.  They suffer from their inability to competently do things that they could do before.

This life-constriction threatens our loved ones’ psychological integrity.  This sets up a process where people with mental illnesses feel they must protect themselves at all costs.  They struggle to maintain some dignity and self-respect in the face of stigma, failure and shame. Still, the behaviors that result — refusing medication, rejecting family and community support, and disrupting family life — do not make sense to us.

Whenever a person has a serious chronic illness, such as COPD, emphysema, chronic heart disease or mental illness, two things happen to their sense of self:

  1. They lose their protective belief that they are exempt from harm.  Much of our sense of safety and our willingness to take risks rests on this belief, especially among younger people.
  2. They lose their sense of a predictable, dependable future.  This results in the use of defensive coping strategies.  These self-management techniques are basically maladaptive.  They don’t help people get what they really want, but they do provide temporary psychological refuge when confidence and self-image take a nose-dive.

In the next post, we will look at typical defensive coping strategies and the empathetic guidelines to help families deal with loved ones who exhibit them.

 

 

 

by karentwinem

How to Navigate HIPPA

Note: Ken and I attended a NAMI Franklin County workshop on February 8, 2020, that included a presentation on Navigating HIPAA for Families and Caregivers.  We learned some good information that, in addition to info we had or have found out the hard way,  we’d like to share with you. 

The Health Insurance Portability and Accountability Act (HIPPA), which went into effect in 2003, has been a major barrier for many families dealing with a loved one with mental health issues.  Sometimes this is because the law is being used correctly.  And sometimes because health care providers are over-interpreting or misinterpreting it.

Here’s one example:  My cat, Chester, needed medicine that the vet didn’t have. So she wrote me a prescription to take to the pharmacy.  Once there, the pharmacist looked at the prescription for Chester Twinem (feline) and asked me how old he was.  I said, “16.”  The pharmacist said, “That’s good.  That means you can sign his HIPPA form for him.”

I was thankful that he wasn’t older because he would not like going to the pharmacy to sign the form for himself with his little paw.

That’s how it can be.  Systems are set up based on HIPPA that actually not in the best interest of all patients. There are the true HIPAA regulations, and then there are the interpretations of those regulations by hospitals, doctors, pharmacists, etc. Here’s a look at the truth:

Who has to comply with HIPAA?

  • Most health care providers (physical, mental health, addiction services providers)
  • Health plans (private insurance companies, such as Anthem
  • Public benefit payers, such as ADAMH boards

These people and organizations are called “covered entities.”

What is protected information under HIPAA?

Basically, it’s any information that a covered entity has in its records about a person who has received health care services, including demographic information. The rule is that HIPPA covers:

  • Information that relates to the individual’s physical or mental health or condition,
  • That a HIPAA covered entity created, received or transmitted in the provision of health care or payment for health care services AND
  • Which either identifies the individual or can be used to identify the individual.

Covered entities must obtain written authorization to disclosed protected information unless HIPPA contains an exception that applies to the disclosure. One exception is sharing between treatment providers.

What disclosures are permitted to families and caregivers? 

 Information can be disclosed to a Personal Representative, an individual who has the authority to make health care decisions under Ohio law.  Other states have different laws on this. Under Ohio law, covered entities (providers) must disclose information to the individual, the personal representative or both.

The people who have legal authority to make health care decisions for another person under Ohio law are:

  • Those with a Health Care Power of Attorney
  • Those identified in a Declaration for Mental Health Treatment
  • A court-appointed legal guardian
  • The parent or guardian of a minor child

What is a Health Care Power of Attorney?

This authorizes a second person to make health care decisions when a person can no longer make them. Two health care professionals have to agree that the person can no longer make decisions for themselves. When that happens, the second person becomes a Personal Representative.

The Health Care Power of Attorney document can also authorize the designated second person to obtain health care information for and on behalf of the individual at any time. It must say specifically: “I specifically authorize my agent to obtain my protected health care information immediately and at any future time.”

 What is a Declaration for Mental Health Treatment?

This document authorizes a proxy to make mental health treatment decisions when the individual does not have capacity to consent to treatment decisions. When the declaration goes into effect, the designee becomes the personal representative. (Note: This form is long and can be difficult for a mental illness person to fill out.)

Unless limited in the declaration, the proxy has the right to obtain personal health information regarding the proposed mental health treatment of the person and to receive, review and consent to disclosure of records relating to that treatment.

 What about court-appointed legal guardians?

The court-appointed legal guardian of an incompetent person is a personal representative. An incompetent person is incapable of taking proper care of themselves and their family as a result of a mental or physical illness/disability, intellectually disability and chronic substance abuse. The process of obtaining legal guardianship takes many months.

What are the rights of parents and guardians of minors regarding information?

The parent, legal guardian or other person acting in loco parentis with legal authority to make health care decisions is a personal representative.

Exceptions include when the minor is receiving confidential mental health services and the parent/guardian has agreed to a confidentiality agreement between the provider and the minor.

The covered entity may decide not to treat a parent, etc. as a personal representative if the covered entity has a reasonable belief that the parent has abused or neglected the child. Or if treating the parent of the personal representative could endanger the individual and the covered entity decides it’s not in the child’s best interest to treat the parent as a personal representative.

What information can be given to persons involved in care?

Health-care or payment-related information can be disclosed to a family member, other relative, close personal friend or other person identified by individual. The information must be directly relevant to the person’s involvement with the health care or payment of health care.

An organization’s policies may supersede and be more restrictive than HIPAA.

Covered entities can notify family members, personal representatives and other people responsible for an individual’s care of the person’s location, general condition or death.

If a person is present in the room and has the capacity to make health care decisions, the covered entity must obtain agreement to disclose personal health information, give the ill person the opportunity to agree or object, or reasonably infer using professional judgment that, based on the circumstances, the ill person would not object.

If a person is not present, or if the opportunity to agree or object cannot happen due to incapacity or emergency circumstances, the covered entity must use its professional judgment to determine whether disclosure is in the best interests of the person.

How do you get written authorization?

The form to obtain written authorization, in which the individual authorizes the Covered Entity to disclose personal health information, has many names:

  • Release of Information
  • Written Authorization
  • Consent to Disclose
  • Standard Authorization form

The form must contain some specific elements from the HIPAA law. Generally, the covered entity is not required to disclose the information.

Ohio’s Standard Authorization Form, which is a national example, says the covered entity is REQUIRED to disclose the information.

So what should you do to get access to the information you need to help your loved one? 

First, you need to act before there’s an issue.  Make sure that your loved one’s health care providers know that you are involved in the person’s care.

Get Health Care Power of Attorney, a Declaration for Mental Health Treatment and, if in Ohio, the Ohio Standard Authorization Form signed and given to the providers.  Do this when your loved one is well enough to discuss and sign to provide you with updates or notifications in the event of an emergency.


by karentwinem

Know Your Meds: Long-Acting Injectables

NOTE:  This information came from NAMI and other sources, as well as my own experiences.

Long-acting injectables (LAIs) can be helpful when an individual with mental illness either refuses or is not compliant with medication, often with very unfortunate results.  Most of the people I’ve met who are using LAIs got started in a hospitalization or a situation in which they had regularly become a danger to themselves.

LAIs slowly release medicine into the blood. Injectable medications used for individuals living with mental illness include: Abilify Maintena®, Aristada®, Haldol decanoate®, Invega Sustenna®, Invega Trinza®, fluphenazine decanoate, Risperdal Consta®, and Zyprexa Relprevv®. The LAIs can last anywhere from 2-12 weeks with just one dose, which helps to control symptoms of mental illness.

What do LAIs do?

LAIs treat psychosis (hallucinations or delusions) in individuals with schizophrenia. Some LAIs may be used as mood stabilizers in individuals with bipolar disorder.

How can an LAI help?

Living with active psychosis causes many people to make very bad decisions, which can result in arrests and involuntary commitments.  LAIs can help individuals stick to a medication plan.

When comparing LAIs to pill medications, LAIs may lower the chances of someone going to the hospital. LAIs allow for a steady level of medicine in the blood. These steady levels help lower the chance of side effects. The LAIs may also help improve quality of life and satisfaction with medicine.

How are LAIs given?

LAIs are given as an injection in the muscles of the arm or bottom. When starting a LAI for the first time, individuals may also have to take pill medication for a few weeks. The pill allows the injection to have time to start working. Injections are given every two to 12 weeks depending on the medication.

What if I’m interested in an LAI?

If interested in a LAI, talk to a doctor. A LAI may not be right for every person with a mental illness. The main side effect of a LAI is pain at the injection site.

When talking to a doctor, ask:

  • How will a LAI help?
  • What symptoms will a LAI control?
  • What side effects may occur?
  • What blood work will need to be done?

How can I pay for an LAI?

LAIs are usually expensive.  Many insurance plans should help cover the cost of one of the LAIs. The drug company for each medicine may also be able to help.

by karentwinem

Know Your Meds: Mood Stabilizers

Mood stabilizers are typically used to treat intense, repeated shifts in a person’s mood, which may be common for those experiencing bipolar, schizophrenia, or borderline personality.

Many mood stabilizer drugs are also commonly categorized as anticonvulsant medications.

The oldest of them, lithium, has been in use for over 50 years and has proven very effective, particularly for bipolar disorder, type I. However, regular blood tests are required when taking lithium because of potential serious side effects to the kidneys and thyroid.

Newer mood stabilizers, many of which were originally used to treat seizure disorders, may work better than lithium for some people. Mood stabilizers can prevent manic or hypomanic episodes and depressive episodes. but also have side effects to know about and monitor.

Common mood stabilizers include:

by karentwinem

Know Your Meds: Anti-Anxiety Medications

The next class of medication are anti-anxiety medicines, which reduce the emotional and physical symptoms of anxiety.  Benzodiazepines such as alprazolam (Xanax) can treat social phobia, generalized anxiety disorder and panic disorder. This information comes from NAMI and goodtherapy.org

These medicines work quickly and are very effective in the short-term. However, people prone to substance abuse may become dependent on them.

Because the body can become used to the meds, doctors may need to increase the dosage over time to get the same therapeutic effect. People who stop taking benzodiazepines suddenly may experience unpleasant withdrawal symptoms. Other potential side effects include:

  • Low blood pressure
  • Decreased sex drive
  • Nausea
  • Lack of coordination
  • Depression
  • Unusual emotional dysfunction, including anger and violence
  • Memory loss
  • Difficulty thinking

Antianxiety and antipanic medications on the market include: