James Lindenbaum was diagnosed with schizophrenia at age 16, and for almost five decades, his mother, Pearl did everything possible to ensure that her son received the care he needed. Psychiatrists and countless other specialists addressed his health needs. Over the years, as his condition worsened, she tirelessly sought the best living arrangements for him. At age 60, she earned a master’s degree in Social Work and dreamed of creating a group residence for James and others with a severe brain disorder.
Despite her heartfelt concern and tireless efforts, her son suffered an untimely and tragic death. “The health care and mental health systems failed him,” she says. “The deplorable treatment – or lack of treatment – he received when he was so physically and mentally ill led to his passing at age 65. I want to raise awareness of the appalling deficiencies in the system to bring about change so this doesn’t happen again to somebody else.”
Over the years, James resided in a succession of adult homes, public and private psychiatric treatment centers, a long-term care facility, an assisted living facility, short-term hospital psychiatric units, and finally, the state-run psychiatric center on Long Island. After James entered the inpatient medical facility at the psychiatric center, Mrs. Lindenbaum sought legal guardianship so she could become a strong advocate and make health care decisions for him. James was declared “an incapacitated individual,” and she was appointed as his legal guardian.
In October 2016, after one year in the inpatient unit, the psychiatric center transferred James to the State-Operated Community Residence (commonly called a “SOCR”), where he received limited supervision and was free to come and go as he pleased. But as a patient diagnosed with “severe and persistent mental illness (SPMI),” James required continual assistance with self-care, eating and medication, which he failed to receive in the SOCR.
As time went by, his condition deteriorated. By early 2019, he had lost 40 pounds, and at six foot one, weighed 145 pounds. He often failed to take his medication, went for days without changing his clothing and for weeks without bathing. Paranoia and hallucinations tricked his mind into thinking someone was going to kill him, and he often stayed up all night in the facility’s TV room.
By February 2019, James had become severely ill and was sent to the emergency room of a hospital on Long Island. When admitted on February 15, he was found to be malnourished and anemic, and had not been taking his medication on schedule. He was diagnosed with pneumonia, in addition to several pre-existing conditions, including chronic obstructive pulmonary disease and multiple cysts on his kidneys.
After a week in the hospital, James was to be discharged back to the community residence, despite ongoing and serious health problems. Mrs. Lindenbaum and a geriatric care specialist she had engaged to oversee his care pleaded with the hospital and the psychiatric facility to not readmit James to the SOCR, as he would not receive the level of care he needed. Their pleas went unanswered.
James was readmitted to the SOCR on February 22, 2019 with pneumonia, dysphagia and several other life-threatening conditions. Twenty-four hours later, James was back in the emergency room and was readmitted to the hospital on February 23, 2019. He never left the hospital. James died on March 22, 2019. The causes of death were listed as respiratory failure and MRSA pneumonia.
Mrs. Lindenbaum believes the heartbreaking tragedy of what happened to her son is not an isolated case. With the ongoing reduction of inpatient psychiatric beds in New York State, James was surely not the only patient with severe mental illness transferred to a residential setting or released into the community and left to fend for himself.
She seeks to expose deficiencies and failures in the health care and mental health systems to bring about change. “Change is imperative to ensure that people with a brain disorder are treated with the dignity and respect they deserve; their constitutional rights are respected; they receive proper medical care and supervision; and they are provided with shelter in an appropriate setting that meets their needs,” she says. “Nothing can bring back my son, but if I can raise awareness that prompts discussion and policy changes, perhaps this will prevent a similar outcome for someone else.”