May is Mental Health Awareness Month and this past May, CBS 6’s Alyssa Caroprese shared some very personal information to bring attention to an issue that is very important to her. He revealed that he has a close relative with a serious mental illness. His intention was to highlight the major systemic failures in the country that make treating the mentally ill a challenge.
Your loved one has been sick for ten years, diagnosed with schizoaffective disorder. This is similar to schizophrenia, but not exactly the same. It is characterized by delusions, paranoia and manic behavior.
Patients with schizophrenia are notoriously difficult to treat. Their illness can make them unable to recognize that they are ill and, as a result, make them non-compliant with their medication. This makes treatment very difficult. It’s a vicious cycle that many families know all too well. Family members often notice a change in their loved one and try to intervene in the crisis (mobile crisis), but often have no luck. Patients end up without medication, sometimes homeless, and in many cases in trouble with the law that can lead to incarceration.
There are so many barriers that make treatment difficult. One of the biggest is the lack of funding for mental health services. This, in turn, leads to a lack of beds and providers. Psychiatric stays are often too short. Law enforcement does not always respond to a mental health crisis with a mental health response and has historically not been trained in de-escalation techniques. Mobile crisis answers whether a person is a danger to themselves or others, but this is a gray area without a clear definition. Many families have difficulty getting the cell phone crisis out of the physical during a time of need.
Another big problem is that we criminalize the symptoms of mental illness in the US instead of providing treatment. This statistic is very telling, on average, the delay between the onset of symptoms and treatment is eleven years.
Mental illness is a family illness. Having a loved one with a serious mental illness can be a long journey filled with hopelessness and discouragement. Often, families end up grieving the loved one they once knew.
Fortunately, there is a national mental health organization for people with mental illness and their families, the National Alliance on Mental Illness. NAMI has more than 700 state and local affiliates, including here in the Capital Region. Its mission is to advocate, educate, provide support and raise awareness about mental illness.
Alyssa sat down with the host of a NAMI family support group at Ellis Hospital that she attended in years past, Kevin Moran. Moran is a peer support specialist and has worked at Ellis for 28 years in psychiatric care. She has been running this support group for over 20 years, which currently meets every Wednesday night. She created this support group, which is affiliated with NAMI Schenectady, to educate families about mental illness.
We don’t talk about mental illness like we talk about any other illness. And if we really believe it’s a biochemical brain disorder that it is, why do we discriminate against it? Moran said.
He has had families travel from as far away as Kingston to join the group.
What happens in this room is a kind of healing process. Families come with this incredible burden of what mental illness is. How do they understand it? It’s a place to talk about your own feelings about having a loved one around this disease, Moran said.
Meetings can be very heavy, but Moran brings compassion and understanding. The staff at Ellis know that it is a reliable source of support and information to offer families.
They thank me. They know I’m there for them. I give them my number so they can call if they have problems, she said of the families who attend the support group.
Alyssa also sat down with a Niskayuna family that attends this support group. For privacy reasons, we’ll refer to them by the fake names of Kate and Joe. They have a son whose diagnosis is potentially paranoid schizophrenia, but it’s still not entirely clear.
When asked what was the hardest part of getting treatment for his son, Joe said: Availability of care. He has to come in to see somebody and there’s just a long waiting list or it’s hard to find somebody who’s available to see him, so it becomes three weeks, six weeks. They did a welfare check and showed up and he didn’t answer the door so there was nothing they could do.
Other challenges have included the response of law enforcement and a lack of mental health awareness.
More than once the police came to our house and said: Well, we can either arrest him or do nothing. what do you want us to do And it’s like, well, neither, Joe said.
Other times, law enforcement doesn’t recognize the incident as a mental health crisis.
Sometimes when the police would come, they would say it’s just a disagreement between them, it’s time for him to go, it’s just a disagreement between you and your son. They’d say, ‘You’re old,'” Kate said.
Kate and Joe have had a similar response from hospitals at times. Even though her son was in a mental health crisis, keeping him hospitalized wasn’t easy.
We’d show up and he’d be in a state and the nurse would check him and talk to us and say they’re definitely going to keep him. The shifts would change at midnight, new people would come in at midnight and they would reassess him and let him go, Joe said.
The family feels some mental health services have improved, along with law enforcement’s response to crisis calls, but they still struggle to get their son the help he needs.
Their children’s illness has changed their family in many ways. At times, their marriage has been difficult. His younger son has taken on the role of older brother and is not as close to his brother. They say that the holidays are not the same anymore.
Kate said: “We always had a big meal. We always had other family over. Now you don’t do any of those things because you don’t know what’s going to happen. You don’t know if he’s going to be with other people. Will it be weird? We’ll have to call the police ?
Kate says the other family members don’t ask about him.
It’s like he’s dead, even though he’s not dead, so it’s really sad. If he had cancer, they would ask about him, Kate said.
Kate says that our loved ones are not asking for mental illness and that they deserve patience, love and support, not punishment.
Like everyone else in the family, we may be unhappy or angry with them, but we still love them and want them to be okay too, Kate said.
Kate and Joe are involved with NAMI beyond attending a support group that has helped them overcome their son’s illness.
NAMI offers many support groups in the Capital Region for both people with mental illness (peers) and their loved ones. They also offer free educational classes led by trained volunteers that can be very helpful for families and caregivers: NAMI Basics, NAMI Family to Family, NAMI Peer to Peer, and NAMI Homefront. Classes and support groups can be helpful in educating yourself and meeting others in similar circumstances.
Click here to donate to Alyssa’s NAMI fundraiser
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