Sidney - An Old Man at Age Forty-Seven
The neighbors hadn‚Äôt seen Mr. Green or his son in a week, and began to become concerned. Eventually, they called the super and he opened the apartment to find Mr. Green‚Äôs decomposing body in his bedroom, and the 47 year-old Sidney Green curled up in a semi-catatonic state on the floor. How did things end up this way?¬†
Sidney was a bright, active child, born to the Greens, the oldest of three other children. In elementary school, Sidney excelled in math and science, and his parents had every expectation that he would go on to grow up into a successful adult. But as Sidney entered high school, he began to act strangely. He stopped socializing and his grades plummeted. At first, his parents thought he was just being a rebellious adolescent, then with his experimentation with drugs they thought his paranoia and difficulty relating to people was coming from side effects. However, in tenth grade, he had a full-blown psychotic episode and had to be hospitalized. The diagnosis was schizophrenia.¬†
At first, the Greens couldn‚Äôt quite come to terms with what the diagnosis meant. Mrs. Green would say, ‚ÄúBut he is so smart. How can there be something wrong with his mind? He is not mentally retarded.‚ÄĚ Of course, in time the Greens became very educated about mental illness, and helped Sidney along. Sidney had good years and bad years; at times going through several bouts of hospitalizations, and then also having spurts of success. He managed to graduate from City College, and for a time was working as a bookkeeper. When he took his medication he did much better, but he hated the way it made him feel. And as many persons suffering from mental illness do, he fell into the paradoxical trap of refusing to take the medication once he felt better, which of course led to his becoming ill all over again. For the last ten years, Sidney‚Äôs functioning leveled out. He did not work, and spent most of his time at home on the computer. Under the circumstances, Mr. Green was satisfied with the arrangement because at least he could keep an eye on him. Three years ago, Mrs. Green passed away, which unsettled Sidney for a period of time. Sidney returned to the hospital, but within a few months settled back into his routine.
Sidney‚Äôs other siblings all moved out and lived in different cities. He did not get along with them. For their part, after suffering various physical and verbal assaults from Sidney throughout their childhood, they were happy to keep their distance. In addition, the other Green children never really felt comfortable visiting home because of the inevitable confrontation with Sidney. At the same time, Mr. Green felt his other children did not need to be burdened with a problem that was not theirs. Sidney was his son and his responsibility.¬†
But this stable arrangement came to a sudden end when Mr. Green died that day. Sidney was incapable of living independently and was completely overwhelmed by his father‚Äôs death. His response was a total retreat from reality. (A death of a parent is hard for anyone to tolerate, all the more so for a person with mental illness.) Once his neighbors opened the door, Sidney was hospitalized. Due to his age, and his apparent inability to adapt, after several months in the hospital, Sidney ended up in a nursing home. Though his physical needs were adequately provided for, he was deprived of any opportunity that might have stimulated his recovery and integration into the world at large. He became an old man at age forty-seven.¬†
One of the hidden and looming health care crises engendered by our increasingly elderly population is the phenomena of children with psychiatric disabilities who continue to live with their parents even as they become senior citizens. In fact, a well-known geriatric care professional remarked, ‚ÄúIf you had ‚ÄėX-Ray vision‚Äô, you could tour every residential neighborhood in this city and find in at least one house on every block a mentally ill person holed up in the basement leading a half-life.‚ÄĚ The parents of such children really mean well, and they are providing for their children in the best way they know. However, there have been many advances in the care of persons suffering from chronic mental illness, and such parents may not have had the wherewithal to take advantage of the various treatments that have become available. To be sure, there are often long waiting lists for residential and supportive programs, and special challenges present in working with persons who at times may be non-receptive to receiving help. Nevertheless, if a family does careful planning and advocacy, in time solutions can be found. A person such as Sidney needed to be gradually exposed to greater levels of independent living many years prior to his father‚Äôs untimely death. If that were the case, he might have been able to continue functioning within his community. A family also needs to develop a care plan that includes financial planning such as the establishment of a trust fund and a trustee or guardian, perhaps funded by a separate life insurance policy to ensure that a child with disabilities will have additional resources to serve in place of his or her parents. Think of Sidney‚Äôs story. If there were a trust fund set aside for Sidney, it might have been possible for him to continue to live in his old apartment within his current cultural and social milieu. His SSI payments would probably cover the rent and some expenses, while the trust could fund a housekeeper/aide to check in on Sidney every day. All parents need to plan for the future of their children until they are able to become independent, however parents of a child with disabilities need to plan for a lifetime.¬†
Although it is best to intervene as early as possible, the involvement of a care manager at any point in the process can help families unravel the complicated care questions that need to be answered. What kinds of residences and day programs are appropriate? What government assistance and subsidies is the person with disabilities entitled to? The Lifetime Care Foundation for the Jewish Disabled specializes in all phases of care management and future care planning for persons with psychiatric or developmental disabilities.¬†
The key to allowing persons with all disabilities live the healthiest and most productive lives is advocacy and careful planning by his or her parents. It does not matter whether the disability is physical, developmental or psychiatric, there are long-term environmental and financial decisions that need to be made, and the earlier they are done, the greater the likelihood for success.¬†
The mission of the Lifetime Care Foundation for the Jewish Disabled is to help families and loved ones of persons with disabilities and the elderly plan for future care. Services include fee-for-service care management, Supplemental Needs Trust Funds, family consultations, assistance in maximizing Medicaid and other entitlements, and referrals to eldercare attorneys.