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.

 

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.

 

 

 

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.


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.

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:

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:

Know Your Meds: Antidepressants 101

Antidepressants improve symptoms of depression by affecting the brain chemicals associated with emotion, such as serotonin, norepinephrine and dopamine. The following information comes from NAMI, goodtherapy.org and other sources.

Selective serotonin reuptake inhibitors (SSRIs) and selective norepinephrine reuptake inhibitors (SNRIs) are newer antidepressants with fewer side effects than older drugs, but no medication is entirely free of side effects. Potential side effects of SSRIs and SNRIs include:

  • Nausea
  • Nervousness, agitation or restlessness
  • Dizziness
  • Reduced sexual desire/difficulty reaching orgasm/inability to maintain an erection
  • Insomnia, drowsiness
  • Weight gain or loss
  • Headache
  • Dry mouth
  • Vomiting
  • Diarrhea

One antidepressant (Bupropion) affects mostly the brain chemical dopamine and is in a category of its own.

Meanwhile, older types of antidepressants, including tricyclics and monoamine oxidase inhibitors (MAOIs), may be prescribed by a mental health professional if newer medications do not seem to be effective. Common side effects of tricyclics include:

  • Dry mouth
  • Blurred vision
  • Constipation
  • Urine retention
  • Drowsiness
  • Increased appetite, leading to weight gain
  • Drop in blood pressure when moving from sitting to standing, which can cause lightheadedness
  • Increased sweating

MAOIs are the least-prescribed of all antidepressants because they can cause dangerously high blood pressure when combined with certain foods or medications. People taking MAOIs must watch their diets carefully to avoid potentially life-threatening complications. Off-limits foods typically include aged cheese, sauerkraut, cured meats, draft beer and fermented soy products such as miso, tofu or soy sauce. Some people may have to avoid wine and all forms of beer.

Some antidepressants may be useful for post-traumatic stress disorder, generalized anxiety disorder and obsessive-compulsive disorder but may require higher doses. Symptoms of depression that are part of a bipolar disorder need more careful assessment because antidepressants may worsen the risk of mania and provide little relief from depressive symptoms. As always, ask your doctor about what treatment options are right for you.

When will the medication work?

In the first few days, the person may have better sleeping and eating habits. In the first 1-3 weeks, the person may have better memory, sex drive, and self-care habits. They may also feel like they have more energy and start to have less anxiety.

After 2-4 weeks, the person may start to have a better mood, less feelings of hopelessness, and less suicidal thoughts. They may also start to feel interested in hobbies again. It may take 6-8 weeks for the medication to fully work.

What are the common side effects?
These are most common in the beginning, and usually get better within 1-2 weeks.

  • Headache
  • Upset stomach, diarrhea
  • Sleepiness or feeling more awake

Some antidepressants can cause sexual problems, such as a decrease in sex drive or problems with ejaculation.

How long do people need to take this medication?
Some people need to take medicine for up to 1 year after they feel better. Others need to take medicine long-term to prevent their symptoms of depression or anxiety from coming back. The length of time depends on how bad the depression or anxiety was, how long they had it, and how many times they have had depression or anxiety in the past.

Here are some of the medication names and their types, with some links to their descriptions in goodtherapy.org

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.

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?