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.

 

 

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%