Know the Meds: Antipsychotics 101

Note: This information came from the websites of NAMI, goodtherapy.org and other sources, as well as my own experience. 

Antipsychotics come in two major categories: typical and atypical. Occasionally they are called first and second generation.

The antipsychotics developed in the mid-20th century are the typical and first generation class.  Atypical or second generation were developed more recently. These medications reduce or eliminate the symptoms of psychosis, such as delusions and hallucinations, by affecting the brain chemical dopamine.

Both types of antipsychotics are used to treat schizophrenia and schizoaffective disorder.  The atypical also are used to treat acute mania, bipolar disorder and treatment-resistant depression.  Both kinds work, but they have different side effects.

What are the names of these medications? 

What are the side effects?

Side effects are most common at the beginning, and most get better over time.  The most common are:

  • Sleepiness
  • Dizziness
  • Upset stomach
  • Increased appetite

First generation antipsychotics are more likely to cause movement issues, such as tardive dyskinesia (a condition in which the brain misfires resulting in random, uncontrollable muscle movements and tics.)

The second generation can cause weight gain.

How long does it take to produce results? 

It often takes four to six weeks for the medication to fully work.  However, in the first three days, the person may feel less upset and angry.

After one or two weeks, the person may have a better mood and improved self care habits.  You may see clearer thinking, with fewer hallucinations and delusions.

How long do people take this medication? 

It depends on the situation: how bad the problems were, how long the illness lasted before treatment, and how many times they have had episodes.  Some people only need it for one or two years, while others need it for a lifetime.

 

 

Know the Meds, Part 1

The treatments for mental illness conditions vary from person to person, which doesn’t make things any easier.  People with the same diagnosis can have vastly different experiences with treatments and medications.

Of course, your loved one’s mental health provider is the best source for information about treatment.  Getting a HIPPA release so you can discuss the situation with them is very useful.  The articles in this series, based on information from NAMI and my experience, are general information to help you understand the treatment options when they are discussed.

Psychotropic, or psychiatric, medications influence the chemicals in the brain that regulate thinking and emotions.  While they can be more effective when combined with therapy, often a person needs the medication first to reduce symptoms to allow them to participate in the therapy.

Predicting what works is a challenge.  One field of research called pharmacogenetics does genetic testing to help determine how medications will interact with a person’s genes.  Some people I know have taken these tests, so it’s worth discussing it with the doctor. It’s also helpful to tell the doctor if a medication has worked well for someone else in the immediate family.

Another major challenge is that the medications rarely work instantly.  A person may need to take medication for as long as a few months to see a difference, which becomes even more irritating if side effects are causing issues.

To try to stop that, physicians usually start with small doses and build up to get to the point where the symptoms are better.  It’s important that your loved one does not stop medicine at once.  Usually, it’s better to taper off to avoid unpleasant effects.

The main categories of psychotropic medicine are:

  • Antipsychotics
  • Antidepressants
  • Anti-anxiety medicine
  • Mood stabilizers

We will look at each in this series.

Why Low Expectations Are a Good Thing

How do you feel when you expect a $100 tax refund and the IRS finds a mistake in your favor, so you get $1,000 instead?

How about when you expect to wait for 10 minutes and you end up waiting an hour?

The way that things turn out compared to how we expected them to turn has a lot to do with how we feel.  Understanding the impact of our expectations can help us deal with the pain and frustration of loving someone with a brain-based (mental) illness.

For example, living with a person who has clinical depression is hard.  We want to help, but we don’t know how. Sometimes our efforts make things worse.  The same is true when you live with a person who suffers from anxiety disorders, bipolar disorder or the spectrum that is schizophrenia.

All of them have an intense need for love, but they often have trouble being loving in return.

What would an expert in the psychological community expect from a person with clinical depression?  Low energy, for one thing.  The depressed have so little energy that they rarely can think about other people.  So they seem self-centered.  The depressed person can feel an inner anger that life isn’t fair.  Yet, getting in arguments to try to talk them out of their hopelessness doesn’t work.

A person with bipolar disorder is expected to show signs of the illness.  The mood swings between mania and depression, with long or short periods in between, may seem as if they don’t have a rhyme or reason.  The reason is chemical, and it needs treatment.

Living alongside someone with borderline personality disorder is a true roller coaster ride.  One minute you are the best, and the next you are seen as a monster. “Walking around on eggshells” is a common description of daily life in that household.  People with this illness are in emotional pain almost all the time, and they project issues on others.

In short, people with mental illness are expected to behave in ways you don’t like.  They can no longer meet many simple expectations that we had for them before the illness.  One of the toughest issues family members have is deciding what the new expectations should be:  Can he work?  Can she do chores?  Can he join us for family dinner?  Can she take a shower without prompting?

This change has more impact on us that we want it to have.  We experience deep pain as we try to adjust,  as one thing after another becomes too much for them to do.  Grieving this loss is tough at the beginning, and it’s just as tough as time goes on.

You can measure stress by the difference between what is happening and what you think should be happening.  So your stress will be intense, unless you change your thinking about “what should be.”

At the beginning of a loved one’s mental illness, a psychologist suggested to us, “Why don’t you try not having any expectations at all?”  Easier said than done, and hard to hear.

But we learned to keep our expectations as low as possible.  To fill in the gap,  it’s wise to turn to God’s promises.  God is both sufficient and faithful,  walking with us through this valley of the shadow of death.  Abiding with the Lord can give you expectations of peace and comfort.

 

 

 

 

 

It Gets Better: The Emotional Stages of Mental Health Caregiving

Just as Elizabeth Kubler-Ross developed a stage-of-grief model, several sociologists have created a model for the emotional stages of loving someone with mental illness.

Dr. Joyce Burland, a psychologist, spent two decades of helping her mother and her daughter deal with schizophrenia.  She found no model for the experience, so she created the family education curriculum Family to Family for NAMI.  (My husband and I have taken this course and recommend it to many families in our support group.)

The Burland model has three stages:

  1. Heads Out of the Sand – The family knows their loved one has a mental illness.  They may still be in denial about how severe the illness is. The family needs education (especially about the prognosis for the illness), crisis intervention and emotional support.
  2. Learning To Cope – The family accepts the illness while still experiencing emotions like grief, anger and guilt. They need education about self-care and coping skills for their loved one, as well as peer support.
  3. Moving Into Advocacy – Some families eventually become advocates to help others struggling with these issues.

Dr. David Karp, a sociologist at Boston College, proposed a second model with four stages:

  1. Emotional Anomie – This stage comes before a firm diagnosis.  It can include fear, confusion, bewilderment and questioning of one’s possible “guilt” in the situation.  (“What did I do wrong to cause this?”) It also contain the fervent hope that the problem will “just go away.”
  2. Hope and Compassion – This occurs when the diagnosis is provided.  Fear and confusion directed at the loved one turn to compassion.  The family starts to learn about the illness and to understand they need to be caregivers.  While still hoping that the illness will be resolved quickly, some caregivers may feel that they are willing to do anything to make things better for their loved one.
  3. Loss of Dreams and Resentment –  Now the family understands that the illness may be a permanent condition.  Some experience anger and resentment because it is a problem that they cannot fix.  The resentments also arise from realizing that the illness will have a long-term impact on their own plans.  Some, such as adult children dealing with an ill parent, find themselves in a role reversal situation.  Many rethink their expectations for the ill loved one, struggling to understand what is realistic.  The struggle to decide what behaviors the loved one can control and what they can’t becomes a daily reality.  Families begin the process of trying to love the person and hate the illness. As the demands of caregiving continue, some families become isolated from friends and other family members.
  4. Acceptance –  The family realizes that it can’t control the loved one’s illness.  They feel somewhat relieved that they are not responsible for fixing the issue.  Karp was the person who created the “4 Cs”:  “I did not cause it. I cannot control it. I cannot cure it.  All I can do it cope with it.”   At the same time, the family more easily sees their loved one’s strength and courage in the struggle.  This may led to more respect and even admiration for that person.

Where you do think you fall in these scales?  Have you experiences the differences between having a loved one with a “physical” illness, such as cancer or heart disease, and having a loved one with a brain-based disease?

When the Worst Happens

Help Wanted

Needed immediately: a person to work 24 hours a day, 7 days a week, 365 days a year. Work gets tougher on holidays and trips. No salary.  No benefits. You may spend significant amounts of your own money out-of-pocket. No training. Learn by trial and error, although  what works one day might not work the next.  Be prepared for days that break your heart and times when you will be mistreated on the job.

If you are a caregiver for a person with mental illness, this is your job description. The shock and horror of getting this job has a seismic impact on the family.  Having a family member with any kind of serious illness is devastating.  Dealing with a mental illness … so often a brain-based physical illness … has extra components that make it even more grueling.

Factors Influencing the Family’s Response

A training put together by Michelle D. Sherman, Ph.D, for the Department of Veteran Affairs to help families impacted by post-traumatic stress disorder, clinical depression and other illnesses common to veterans noted that some families have an easier time responding to this situation than others.

The factors that impact the situation in any health crisis include:

  • The family’s support system.
  • Previous experience with or knowledge of the illness.
  • The family’s coping pattern in times of great stress.
  • Access to health care and the quality of that care.
  • Financial status.
  • Type of onset of the illness (sudden vs. gradual, public vs. private).
  • Nature of the symptoms.
  • Other demands on the family.
  • The loved one’s compliance or refusal to participate in care.
  • Prognosis of the illness.

Other factors are specific to mental illness:

  • Reactions by others are unpredictable and even hurtful.
  • Family members feel guilt that they somehow caused the illness, could have prevented the illness or did not detect it early enough. It’s typical to feel guilty about your reaction to previous behavior caused by the illness that you felt were intentional actions.
  • The prognosis and course of treatment are less concrete than with other physical illnesses.
  • The loved one can have embarrassing behaviors that could even result in arrest.
  • The loved one (as well as some family members) can refuse to accept the diagnosis.  This can result in failure to comply with treatment, lying about that, anger toward the family and total lack of appreciation for the family’s efforts.

As a result, families feel isolated. When they turn to their social and religious support, some get no help. Many fear telling others about the illness and do not ask for help.  Tension within the family can get very tough, especially when one or more family members refuse to believe that the loved one has a mental illness.

Families do tend to go through stages as they deal with the situation.  Next time, we will look at the patterns involved in this.

 

 

My Loved One Is Showing Signs of Mental Illness. What Do I Do?

Step One: Trust your instincts. This is especially true if you are very close to this person …. it’s your spouse or your child or your best friend. If their behavior seems unusual and demonstrates one or more of the warning signs of mental illness, you need to pay attention. The worst thing you can do is to ignore it.

If the person is a teenager, you may be tempted to dismiss this as a stage. Yes, many teenagers have episodes of sadness, anxiety, frustration and feelings of being overwhelmed. The episodes should not last more than a few days at most.

If the feelings last for weeks or months, speak to your child about your concerns and consult your family doctor. Teenagers who have stopped participating in activities, no longer connect with friends, and are chronically disconnected, angry and sad are exhibiting abnormal behavior and need help.

Likewise, it is never normal to have a psychotic episode. Even if someone appears to go back to normal, they need a professional assessment.  It won’t hurt anything to check into the situation. Go along with the delusion to get the person to a doctor.

What to Say and How to Say It

So what kind of conversation should you have with them? Here are some tips:

  • Speak in a calm voice.
  • Say what you mean and listen. “I am concerned about you because …” “How are you feeling about this?”
  • Try not to interrupt the person.
  • Avoid sarcasm, whining, threats or yelling.
  • Don’t criticize or call names.
  • Try not to use the words “always” or “never.”
  • Deal with the now.
  • Remember: This has nothing to do with you.  It’s a brain condition.
  • Acknowledge that you are in this together.
  • If things get heated, take a break and come back to the discussion later.

If you are seeing behavior or hearing language that indicate the person is a threat to themselves or others, take them to the emergency room. Tell the staff at the check-in what is going on immediately. If you have a specialized system for dealing with people in psychiatric emergencies in your town, you can call that organization (Netcare in Columbus, Ohio, for example) instead.

Otherwise, make a doctor’s appointment. Some psychiatrists who do not take regular insurance may be able to see you more quickly. Your loved mental health organization may have some names you can call.

While you are waiting for the appointment, help the person take steps to reduce their stress. Encourage them to do something relaxing. Try to help them keep a regular routine of sleep, activity, meals and medication. Again, trust your instincts. Go to the emergency room if you suspect psychosis or suicidal thoughts.

Early Warning Signs of Mental Illness

The warning signs of mental illness often come early in life. Fifty percent of cases of mental illness begin by age 14, and three-quarters begin by age 24.

Looking for warning signs will help you, your loved one and his or her treatment providers get a head start on managing the illness. Generally speaking, it’s hard for the people with the illness to fully recognize the warning signs. So often his friends and family will start to see problems first.  Here are some typical signs:

  • Increased irritability.
  • More noticeable tension, anxiousness or worries.
  • Increased sleep disturbances (such as hearing your loved one being up all night and sleeping through the day OR  not sleeping for more than 24 hours)
  • Depression.
  • Social withdrawal in more extreme forms, such as refusing to leave his or her room even to eat, spending most of the time alone.
  • Deterioration of school or job performance.
  • Concentration problems (taking longer to do tasks, have trouble finding tasks, having trouble following a conversation or a TV show).
  • Decreasing or stopping medication or treatment (such as, refusing to go to the doctor or the case manager appointment, skipping the vocational program).
  • Eating less or eating more.
  • Excessively high or low energy.
  • Lost interest in doing things.
  • Poor hygiene or lost interest in the way he or she looks.
  • Saying that he or she is afraid that he or she is “going crazy.” 
  • Becoming excessive in religious practices.
  • Feeling bothered by thoughts that he or she can’t get rid of.
  • Mistrustfulness or suspiciousness.
  • Showing emotions that do not fit the situation.
  • Vague speech.
  • Speech that doesn’t make sense.
  • Making up words.
  • Inappropriate responses … laughing or smiling when talking of a sad event, making irrational statements.
  • Unusual idea or beliefs.
  • Feeling completely overwhelmed. 
  • Leaving bizarre voice mail messages, outgoing messages or writings.
  • A blank vacant facial expression.
  • Rapidly changing mood … from happy to sad to angry for no apparent reason.

Warning Signs of Mental Illness in Children

  • Severe and recurring depression … feeling very sad or withdrawn for more than two weeks.
  • Explosive, destructive or lengthy rages, especially after the age of four.
  • Extreme sadness or lack of interest in play.
  • Severe separation anxiety.
  • Talk of wanting to die or kill themselves or others.
  • Dangerous behaviors, such as trying to jump from a fast moving car or a roof.
  • Grandiose belief in own abilities that defy the laws of logic (possessing ability to fly).
  • Sexualized behavior unusual for the child’s age.
  • Impulsive aggression.
  • Delusional beliefs and hallucinations.
  • Extreme hostility.
  • Extreme or persistent irritability.
  • Telling teachers how to teach the class, bossing adults around.
  • Creativity that seems driven or compulsive.
  • Excessive involvement in multiple projects and activities.
  • Compulsive craving for certain objects or food.
  • Hearing voices telling them to take harmful action.
  • Racing thoughts, pressure to keep talking.
  • Sleep disturbances, including gory nightmares or not sleeping very much.
  • Drawings or stories with extremely graphic violence.

Trust Your Instincts

If the person is a family member … a child or husband … and their behavior seems unusual to you, trust your instincts.

If your teenager is not engaging in activities or with friends and is chronically disconnected, angry and sad, the behavior is abnormal and needs intervention.

Many teenagers have episodes of sadness, anxiety, frustration and feelings of being overwhelmed.  The episodes should not last more than a few days at most.  If the feelings are continual and your teen is chronically anxious, speak to your child about your concerns and consult your family doctor.

Don’t ignore. Don’t accept other people saying it’s just a stage. Trust your instincts that something is wrong.

Mental Illness: Brain-Based, Common and Episodic

Mental illness is a difficult phrase: It implies that this kind of illness is different from all other kinds of illness. It’s not. It’s a brain-based illness, for the most part. I use the phrase because it is widely understood, not because it is appropriate.

Mental illness is common, and it’s generally episodic. Things get better and then things get worse and then things get better again. 

Illness or Individuality?

There are plenty of people who are very shy, or believe in government conspiracies, or are sure that they talked to the dead, or heard directly from God.  Does that mean they are mentally ill?  Not necessarily.

To one degree or another, many people hold views that are unusual or eccentric. To qualify as mental illness, the behavior must do these things:

  1. The symptoms must interfere with the person’s ability to have social relationships, go to school or hold down a job, or take care of himself.
  2. The most severe symptoms must last for at least a month, unless the period is cut short with successful treatment.
  3. The symptoms are not explained by drug abuse, the side effects of another medication or the impact of another illness.

Is Mental Illness Really Common, Though?

Yes. It may not seem common because it is so often hidden. Here are the facts from NAMI and the World Health Organization:

  • About 1 in 5 adults in the U.S. – 43.8 million or 18.5% experience a mental illness in any given year.
  • About 1 in 25 adults in the U.S. – 9.8 million or 4% – experiences a serious mental illness in any given year that substantially interferes with or limited one or more major life activities.
  • About 1 in 5 children aged 13-18 (21.4%) experiences a severe mental disorder at some point.  For children aged 8-15, the estimate is 13%.
  • 1.1% of adults in the U.S. are on the schizophrenia spectrum.
  • 2.6% of adults in the U.S. have bipolar disorder.
  • 6.9% of adults in the U.S. – 16 million – had at least one major depressive episode in the past year.
  • 18.1% of U.S. adults have an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.
  • About the 20.2 million adults with a substance use disorder, 50.5% – 10.2 million adults – have a co-occurring mental illness.
  • About 26% of homeless adults staying in shelters have a serious mental illness.
  • About 20% of state prisoners and 21% of local jail prisoners have a recent history of mental illness.
  • 70% of youth in juvenile justice systems have at least one mental health conditions and at least 20% have a major mental illness.
  • More than 90 percent of children who commit suicide have a mental illness.
  • Only 41% of adults with a mental health condition received medical services for it.
  • Only half of the children with mental health conditions get help.
  • African Americans and Hispanic American use mental health services at about half the rate as Caucasian Americans.  Asian Americans get services at about one-third the rate.
  • Percentage of people with mental illness that Jesus cared enough about to die for:  100%

Are You a Sponge or a Mirror?

Need to take your life back? One of the best books of practical advice I’ve found is “Stop Walking on Eggshells” by Paul T. Mason and Randi Kreger. The authors focus on Borderline Personality Disorder, but the advice is good for ANYONE who is feeling overwhelmed by another person’s behavior.

You start by asking yourself:  Are you a sponge (soaking up the other person’s pain) or a mirror (reflecting reality back to the person)?  The advice about improving communication is particularly good.

You must not spiral into another person’s distorted world, but you still can listen carefully to detect what the person is really upset about. It’s hard to be verbally attacked for a delusion, but the pain and fear underneath that attack are real.

While the person’s feelings may not make any sense to you, they make sense to them. Don’t judge. Don’t trivialize. Don’t be condescending. Use active listening skills to validate the feelings.

Still you must know your boundaries … what you will and will not tolerate.  Stay consistent, no matter what. Research shows that inconsistent response to a behavior actually makes that behavior more persistent than even rewarding the behavior every time does.

When things need to change, make specific requests in simple language, as in: “I want you to stop hanging up on me and then immediately calling me back when we are talking on the phone” rather than “Stop being so disrespectful.”

If you feel helpless, get some help yourself from a counselor.  Together you can work out responses to difficult situations. When my daughter was very ill with juvenile bipolar disorder, I had my own therapist. She was a great gift in my life because she understood that my daughter’s illness and could see difficult situations with a compassionate outsider’s viewpoint.  That gave me insights and ideas I would not have had otherwise.

In effect, you are learning to love the person while still being loving to yourself.  It will make both of you better.

A Good Case Manager Is Hard to Find

The quest to find good professionals to work with your loved one with mental illness may … frankly … drive you crazy.  We’ve paid good money to:

  • A therapist who thought my son had a bad case of “failure to launch” and completely missed the fact that my son was developing schizophrenia. (My hand to God … it’s true.) Even better, when my son had to be taken to the emergency room and the psych ward, we were unable to reach him because his office phone had been cut off for nonpayment.  Thanks, Cigna.
  • A therapist who talked my son with schizophrenia into not taking his medicine.  (Surprise! His ideas about the illness being the remnants of drug use were wrong.)
  • A psychiatrist whose wife/office assistant got me mixed up with another patient’s caregiver, yelled at me, realized her mistake and said, “Please don’t tell my husband.” 

I now realize that we were incredibly blessed with my daughter’s psychiatrist, who spent several hours with her every month for a 11-year period from 1989 to 2000. Today psychiatrists dispense medicine, period. You see them for 15-minute appointments once a quarter, and you work hard to convince your loved one to at least tell them the truth about their symptoms.  It’s relatively easy to lie to someone who hardly ever sees you.

Nonetheless, it’s important to partner with your loved one’s social worker, case manager, therapist and/or psychiatrist. I’ve found there’s a natural period where they assume that you are part of the problem, but it can change over time. And, even if the therapist is unable to tell you things, you have every right to call the therapist with important information.

We worked for 3-1/2 years to get my son moved to a good counseling center where he soon will have a case manager who I personally knew from many months in a support group where he was the facilitator.  He heard me bitch so much about the other social workers and therapists that he was a little worried about working with me.  I got that from this direct quote: “You’re going to be mad at me now.”

Probably not.  The issue with schizophernia is that the illness begins at about age 20, when the young person is trying to get away from Mom.  That makes trying to get the person to do what you know they need to do all the more trying.  Until he left his job, he was a strong thoughtful social worker who did a great job in the role of my son’s advocate.

The biggest issue is keeping a good relationship with a case manager or therapist in place.  Lots of people change jobs, and, when that person is your loved one’s link to sanity, it can have a serious impact.  Things also get better when you are lucky enough to have your loved one entered a permanant supportive housing situation. The case manager for all residents is in an office on-site, and that has been so wonderful.