When You Can't Get Help for a Loved One With a Serious Mental Illness

Have you noticed when an elderly grandparent develops Alzheimer’s, it’s usually expected for family members to take care of their affairs, help with appointments and communicate with medical staff?

Because Alzheimer’s impacts brain function, right?

Then why doesn’t our system see the parallels between this and severe mental illnesses?

In all of these cases, brain function is impaired. We wouldn’t ask an Alzheimer’s patient to call doctors, remember their appointments, fill out paperwork for Social Security, pay their bills, raise children without help and magically remember to take all their medications, would we?

Then why in the world does our legal system expect this of patients with severe mental illness?

When well-meaning politicians didn’t want to force treatment and prevent the unnecessary institutionalization of patients, long-term mental health hospitals were closed and new policies were made. But these policies created giant loopholes. Severely mentally ill patients were shut out of treatment, left to the streets and prisons. Now, approximately 200,000 individuals with untreated mental illness are homeless, constituting for one-third of the estimated total homeless population. Recent studies suggest that at least 16 percent of inmates in jails and prisons have a serious mental illness.

And the laws we’ve created to protect patients privacy — passed through the Health Insurance Portability and Accountability Act (HIPAA) — further solidified patient rights by insisting that patients 18 and older must give signed consent for any medical information to be shared with another. This shut the door to all family support and communication with doctors.

We know that mental illness is a broad category that includes depression, anxiety, bipolar disorder, schizophrenia and other needs.

But what might be less well known is that out of those who have have schizophrenia, 50 percent have anosognosia, which means they have a lack of insight into their illness. 40 percent of patients with bipolar share this same lack of insight. Without the awareness that they are sick, this large group of patients will not seek treatment.

I believe telling ourselves we are being noble by allowing these patients to come to terms with their illness in their own time and giving them the right to be sick, is just plain ridiculous.

Tell that to my 9-year-old niece who lost her mom to a sea of paranoia at age 6 because assisted treatment wasn’t an option.

My baby sister, Julia, was 23 when she had her first episode. When she began to spiral out of control, she lost her job, health benefits, disappeared into her thoughts and because she didn’t seek treatment, she lost her 6-year-old daughter. Life became solely focused on her illness. Our only options were:

1. Calling the police

2. Calling Child Protective Services.

3. Calling her doctors to share how she was, knowing they couldn’t respond with more than, “I’ve received your message.”

These were pathetic options that revealed a reactive system and barred Julia from a preventative one.

Julia couldn’t think clearly enough to advocate for herself. She told me that “sharks speak Vietnamese” and began to speak in their language. Voices and paranoia swarmed her senses and reality was out of her grasp. Without this sense of reality, she couldn’t access necessary treatment nor did she see the need for it.

HIPAA laws prevented her family from helping her access treatment through communication with her doctors.  

As a result, the people who loved her most were not able to help her grasp reality once again. She didn’t have the capacity make her own appointments or sign a release of information for communication with doctors in this state.

Her doctors were locked out of being able to assist her.

The only way they could admit her was with her consent or if she proved a “harm to self or others,” meaning once she became violent they could help her.

Isn’t it too late by then?

If mental health reform had passed prior to when Julia became sick, her story could have been different in these ways…

1. Her family could have spoken freely with her doctors about her needs.

2. Her doctors could have followed alternative legal steps to provide assisted treatment knowing that anosognosia was present and prevented her from accessing care.

3. With HIPAA reform and Assisted Outpatient Treatment laws in place, perhaps she would have been able to gain stability before she lost her job, lost custody of her daughter and spent years spiraling in a fearful sea of paranoia.

Culture can change through intentionality.

Relentless voices are the way to end the silence.

Relentless voices will help us create a better system.

Relentless voices will save lives.

This issue impacts every culture, every socioeconomic status, and every city.

The time for mental health reform is now. Passing mental health reform will remove the loopholes and provide hope for my baby sister and many more like her.

Learn more about the movement to reform mental health.

Will you voice your support?