South Lake Tahoe couple uses life’s lessons to teach others how to cope with mental illness

Publisher’s note: This is one of several stories about mental health issues in the Lake Tahoe Basin that will be running through October. All stories may be accessed by going to the Home page, Special Projects, then hit Mental Health.

By Jeanne Nelson

Nearly five years ago a kind nurse saw me sobbing in the waiting area of a psychiatric hospital.

I told her, “I don’t know what to do to help our young adult son.”

Mental-ILLNESS-LOGOBecause of overly restrictive HIPPA laws and our lack of psycho-education at the time we did not know the right questions to ask or the right information to proactively share to get him the help he needed and deserved. This kind nurse whispered in my ear, “You need to find NAMI.”

We had recently retired and moved to this beautiful rural area from the Bay Area. We could not find NAMI (National Alliance on Mental Illness) support and education locally so we would drive five hours each way monthly to attend NAMI Family Support groups in Palo Alto. Our loved one was living in the Bay Area receiving mental health services and supports there.

Through NAMI support we found hope, education and healing. At first we did not comprehend that recovery was possible. The doctors and nurses helping our loved one were so confident about his ability to recover and thrive. We learned quickly the importance of believing in recovery and learned the important role psycho-education of the family/caregiver/friend community support system plays in the recovery process.

Based on our experience we felt compelled to help expand the availability of information about mental illness within the community; hoping to help others avoid the frustrations that we experienced. We now facilitate a NAMI monthly support group for family members and friends of those living with mental illness (second Tuesday of each month at 6pm at the South Lake Tahoe Library). We also offer a yearly evidence-based NAMI Family-to-Family class to help family members learn how to best help their loved ones, and themselves.

After struggling to find our way though the gaps in the mental health and criminal justice system for years we have identified several things that seem crucial to implementing an effective mental health support system, but are often unavailable. First and foremost there is a severe shortage of mental health providers. Psychiatrists are few and far between, and those willing to take on cases involving psychosis are mind-numbingly hard to find.

We need greater cross training for primary care physicians, cross training of mental health professionals in co-occurring addiction, and need greater cross-training of mental health professionals in actual brain science. The notion that bad parenting or purely trauma caused all psychiatric issues is outdated.

Jeanne and Alan Nelson have used their experience to help other with mental health issues. Photo/Provided

Jeanne and Alan Nelson use their experience to help others with mental health issues. Photo/Provided

Trauma is a powerful thing, but genetic predisposition plays a strong role. We are fortunate in South Lake Tahoe to have two psychiatrists (three as of Aug. 1) plus tele-medicine for psychiatry. We also have many quality therapists locally.

LTUSD has secured excellent counselors, psychologists and nurses skilled in mental health focusing on early education and intervention.

We have far superior mental health services in our rural South Lake Tahoe than the vast majority of rural communities across the nation heavily due to the facilitation Barton Health has provided in pulling the community leaders and service providers together to work collaboratively on strategic priorities. Still, the waiting lists are often several months long and you must have very specific types of insurance to access the providers.

Within the mental health system there is no universally recognized standard of care as there is in other fields of medicine. Policies must be enhanced toward a standard of care that is patient-centric. Metrics needs to drive this change in staff behavior and performance.

We had so many families calling us in the South Lake Tahoe area saying their loved one was released from the hospital but they do not have an outpatient appointment yet and they did not know what to do. This is one of the most common places our loved ones slip through the cracks.

This led us to publishing a post-hospitalization tip guide for El Dorado County. They are available at our NAMI support group meeting or one of the six new mental health kiosks located at these locations: Barton ER, Barton Family Medicine, Barton Community Health, El Dorado County Library on Rufus Allen Boulevard, and Lake Tahoe Community College.

Mental health care workers have not yet evolved to a community care approach. In-patient and outpatient workers need to see themselves as part of a single treatment team. The notion that my patient has been released from the in-patient psychiatric unit in Sacramento so my job is done needs to be more than just frowned upon. Policies must be enhanced toward a standard of care that is patient-centric.

Jeanne Nelson believes a sense of humor is critical to get through hard times. Photo/Provided

Jeanne Nelson believes a sense of humor is critical to get through hard times. Photo/Provided

We know that the jails in the United States are the largest provider of mental health services, and yet, they are not equipped to adequately deal with the mentally ill inmates. It is crucial to have a behavioral health court to divert some of the mentally ill arrestees to treatment, rather than jail.

Other counties such as San Mateo and Santa Clara have loads of folks lining up to get into those diversion programs and they have some superbly trained compassionate probation officers skilled at recognizing signs of de-compensation and skilled at facilitating treatment adherence.

Behavioral health court diversion programs require proactive collaboration by the jail nurse, probation, county mental health and substance abuse clinicians, the judge, and NAMI. If any of these key player-ingredients are not playing their position to proactively hunt for improvements in the overall program, we are falling short.

The Mental Health Commission (which is comprised of experienced volunteers) recently agreed to assess our EDC Behavioral Health Court in South Lake Tahoe. Such assessments may inspire establishment of improved performance metrics. The results will be available by late summer.

Another thing that concerns us greatly is that many states across the U.S. have now “voted-in” marijuana as medicine, completely bypassing the FDA required studies to understand fully the potential effectiveness of a drug on a particular illness, as well as the side effects of the drug. Unfortunately, there is extremely limited research to support most of the claims of marijuana’s efficacy as a medicine and there is significant research to suggest that marijuana has a role in the onset of schizophrenia. Thirty-eight percent of those living with alcohol addiction and 53 percent of those with drug addiction have a co-occurring mental health condition and many do not realize it. This is why we emphasize the importance of having the crucial family history conversation with adolescents so they understand family genetics and the risks their choices can play on their life-long wellness.

We often think about how things could have been if we had been better educated about mental health before our journey began and consider what we would have done differently. We now know that family/caregiver support is a key ingredient in the recovery journey.

We now know who to talk to and what questions to ask psychiatrists and other mental health professionals. We know to use California’s AB-1424 form (medical history) and advise all family members with loved ones with mental health conditions to get familiar with this form (available on the El Dorado County website or at our NAMI support group meetings).

In hindsight we should have intervened much sooner in spite of others believing it was “just marijuana” causing the symptoms. We would have attended NAMI support group earlier in the process. We would have attended NAMI education sooner and would have pursued understanding our family history by assessing both addiction and mental health genetic predisposition risks sooner. We would have had crucial conversations with our children earlier.

South Lake Tahoe has made impressive improvements in mental health services and support in the past year, and we are on the verge of a major transformation in the coming years. The better educated we all are about mental illness, the greater our progress and transformation will be.

We encourage a sense of humor within our family and in our community. My husband makes me laugh every day. This spring he surprised me with daffodils he planted in the shape of a giant happy face.

Jeanne and Alan Nelson are the NAMI – National Alliance on Mental Illness – representatives on the South Shore.