Please God, Help Him Remain Stable
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This article is excerpted from Minoti’s book, Beyond a Parent’s Love, which is available from Amazon using the link on this page.
Mental illness can cause immeasurable devastation in a family. The illness often surfaces during teenage years or later and is not easily diagnosed. Denial and lack of cooperation from the mentally ill person can make treatment, caring, and financial planning more difficult. Those with mental illness may not be cured, but can remain stable with medication and counseling.
It was the darkest night of Filip and Helena’s life. They were forced to admit their son Adam to the hospital after an excruciating manic episode. Adam was 20, diagnosed with bipolar and obsessive-compulsive disorder. His behavior had become increasingly unusual the past few days. Adam had insomnia, paced the house all night, and had not been eating well. It was painful for Filip and Helena to watch him suffer.
Adam was obsessive about cleanliness. It was common for him to take three to four showers a day, wash his bed sheets every day, wipe his bedroom furniture several times a day, and wear double socks all the time. Lately, he had become phobic about germs in his hands and washed them every 10 minutes. He became dissatisfied with soap and hot water and began using Clorox bleach. Filip and Helena’s fear mounted, and they begged Adam to visit his psychiatrist, to no avail. They were alarmed when he demanded they buy him long rubber gloves but believed they did not have a choice and hoped it would help him. Adam tied rubber bands around the opening of the gloves and his elbows to avoid letting germs enter the gloves. It was late July and a very hot summer in Detroit. Adam showered and ate with his gloves on for three days. Helena was very concerned how the heat was impacting his hands and begged Adam to remove them. Adam became furious, began pacing the floor of their small home, and started screaming. He pointed fingers at his mother and used extremely foul language. Filip, usually a patient man, became irate and pushed Adam in a corner with all his strength and held him down. Helena cut the rubber band with scissors and pulled one of the gloves.
The scene was horrific. Adam’s fingers and arm were blistered from the bleach. Some were infected from the heat inside the glove, and the smell was foul. Adam lost control, shook loose from his parents, and let out a wail. He panicked, opened the front door, and ran out of the house with Filip in pursuit. It was late afternoon on a Saturday, and some of the neighbors were in their yards. Helena sat down helplessly, then knew instantly that she had to take action and called 911. The EMS arrived followed by a police van. The police found Filip with Adam still agitated and out of breath and brought them back to the house. Adam was scared and needed to be calmed down. The EMS team asked Adam if he was ready to go to the hospital. Filip and Helena were concerned if he would resist. They had chosen not to be his legal guardian when he turned 18 and could not force him to be hospitalized. Adam protested but finally relented, and Helena and Filip followed the ambulance. Adam was admitted to the hospital in the psychiatric ward for an acute case of manic depression.
Filip and Helena had faced many challenges in their lives since childhood. They fled communist rule in their native Poland with their families to become educated, have stable jobs, and a home in the United States. Nothing had prepared them, though, for the anguish of their beloved only son’s illness.
Filip and Helena migrated to the U.S. after World War II. Poland had become a communist-controlled satellite of the Soviet Union, prompting a large wave of immigration. Filip was 10 and Helena was 11. Filip’s family spent the first year in the Chicago area and later moved to Detroit, where his electrician father had a better chance of employment. Helena’s family settled in Hamtramck, a community bordering Detroit with a large Polish population. The familiarity of the Polish culture established by the earlier immigrants in this town was comforting to Helena and Filip’s family. Michigan’s weather was similar to Poland and also made them feel at home.
Filip and Helena met in middle school in Hamtramck. The school was attended by many Polish immigrant students along with students from a few other ethnic groups. Many, including Filip and Helena, struggled to adjust to their new environment and learn English. They were haunted by the memories of war and the effort of migrating to the U.S., leaving behind the only world they knew. Their parents found employment, and the families slowly established roots in their new homeland. The Polish population in Hamtramck created a little Poland right near Detroit. The various bakeries, produce stores, butcher shops, restaurants, and tailoring shops owned by Polish immigrants and serving the local population made the new arrivals feel at home. The Catholic churches also offered services in Polish, and the polka clubs were very popular.
Filip was the youngest of three boys in his family. His father was a well-trained electrician and easily found employment in the automotive industry. His mother was an excellent baker and worked for a bakery near their home. Filip’s brothers saw the benefits of working for the automotive industry and began working on the assembly line as soon as they finished high school. Helena was an only child. Her father was a construction worker. The post-war construction boom helped him find a job very quickly. Helena’s grandmother, a widow, also lived with them. Helena’s mother was a seamstress and cared for Grandma Babcia and Helena. She took orders for alterations and worked from home when she could.
Helena loved math since she was in elementary school in Poland. Her teacher recognized her natural talent and encouraged her to take on extra assignments to get ahead. Helena learned high school math easily and was asked to help out a few struggling students. Filip did not need help but accompanied his friend Micha after school one day. That introduction was the beginning of a long friendship between Helena and Filip. Helena was a very attractive but shy girl. Filip was a cheerful and hardworking young man, the joking boy of their class. They often hung out together during lunch break and occasionally after school. They attended the same church and often ran into each other socially. They were young, but the war and their transition to this new world had matured them quite early. Their goal was to assimilate in the American world as quickly as possible and yet maintain the culture they were proud of.
Filip and Helena graduated from high school at the same time. Filip found a two-year apprenticeship in an electric contracting company; his goal was to work for the automotive industry just like his father. Helena decided to pursue an associate degree in accounting at a local community college. Only a handful of girls from their graduating class went for further studies, but Helena was ambitious. They were both busy pursuing their career goals and establishing themselves and helping their families. Helena helped her mother with some of her sewing and cooking. She spent as much time as she could with her grandma and adored her Babcia. Filip and his brothers were close to their parents, and they all shared a common mission. They worked for everything America had to offer with determination and honesty.
Filip and Helena remained great friends, but it was another two years before they admitted that their feelings for each other were more than just friendship. On a spring Saturday evening, Filip asked Helena out to a polka club for polka dance and music. They both loved polka; it was part of their history, their culture. They were feeling nostalgic, and during their emotional moment, Filip asked Helena to marry him.
Fifteen years after they arrived in the United States as children, Filip and Helena were married at their church in Hamtramck surrounded by their friends and families. They moved into a small home in Detroit, close to Helena’s work but not far from their parents.
Helena and Filip felt blessed to have their home and steady jobs. Filip was employed by Ford Motor Company and Helena was in the J.L. Hudson Co. accounting department. Their home was tiny, a 700-square-foot ranch, but it was their own. Helena dreamed of having children and hoped to have two or three. She did not want her children to feel the loneliness she experienced as an only child. Life did not move in the direction Helen and Filip hoped.
A little over a year after they were married, Helena caught a bad cold with a sore throat, fever, and runny nose. She had trouble swallowing but did not pay much attention; many people were experiencing similar symptoms at work. It was getting close to the end of the year, and work was busy. She nursed her cold for a day and went back to work. Christmas was near, and she looked forward to time to rest and be with family.
Helena did not improve by Christmas morning. She had a fever and severe muscle aches. She had attended midnight mass the night before and was very tired. She worsened as the day progressed, and Filip recognized that she needed to see a doctor. Her joints were swollen and painful; she still had a fever, and a rash developed over her body. The doctor was concerned and suspected that her cold a few days prior may have been strep throat and her symptoms were that of rheumatic fever. He typically saw this happen to children but rarely in adults. He ordered lab tests to confirm the diagnosis and treated Helena with aspirin, steroids, and penicillin. She continued the penicillin for several months.
Helena recovered after two weeks and life went on normally for a while. Filip and Helena agreed to wait a little longer to have a family. That wait ended up taking years. When they were ready, Helena had difficulty conceiving, and it made her sad. Most of her other friends had children by then as did Filip’s brothers. Her parents and grandmother Babcia were eager to have a baby in the family. Her grandma was aging and quite frail.
Two years after her rheumatic fever, Helena complained about lack of stamina and fatigue. She did not have much strength to do household work. Filip was a caring and loving life partner and picked up a lot of the home responsibilities. Helena could not imagine having a child with her current health condition. Months went by, and when things did not improve, she was referred to a heart doctor at the Detroit Receiving Hospital. Helena was diagnosed with rheumatoid heart disease, most likely caused by an undiagnosed strep throat years ago. There was no treatment prescribed, but she was cautioned that over the years her condition could worsen.
Helena decided to work part time.
She found a job at a family-owned accounting firm close to her home. The four-hours-a-day work pattern helped. Helena felt healthier and again hoped and prayed for a child. Helena and Filip consulted doctors; both she and Filip were healthy and medically fit to have a child
Nine years after they were married and given up all hopes of having a child, Helena became pregnant. Filip and Helena were overjoyed and grateful. Helena was 35 and a little concerned she might be too old to have a child. Her heart condition had not worsened, but she was not very strong. She wondered if she would be able to handle raising a child – and if she would need to give up her work. She loved her job and the income helped, although Filip earned a reasonable amount as an electrician. Both Filip and Helena’s parents assured her they would help out when the baby was born.
Adam was born in the spring of 1970, a beautiful and healthy baby. Filip and Helena felt truly blessed to complete their family. Filip’s parents welcomed their sixth grandchild and were very happy for their son. Helena’s parents were thrilled to be grandparents. Helena thought of her grandma often; she had passed away several years ago and would have loved to meet her son. Helena stayed home for six months and went back to work in the fall. Her parents watched Adam while Helena was at work. She had survived her pregnancy and childbirth well but still felt exhausted easily.
Adam brought laughter and joy to the family. Filip and Helena’s lives revolved around their work and family but mainly their son. Their own childhood had lost some of the innocence and was marked by the ugliness of the war. They wanted to raise their child with love and peace. The 1967 riots in Detroit had brought back some of the dark and buried memories for them. A lot of families had begun to move to the suburbs. Filip’s parents were considering moving to Sterling Heights northeast of Detroit. Filip and Helena agreed to move as well before Adam began kindergarten; they moved to Warren.
Adam was a sweet boy but also had a stubborn streak and occasional temper tantrums. He was usually a little quiet and did not always enjoy being with other noisy children. Adam was very bright and, surprisingly, loved learning numbers just like his mother did as a child. Helena also made sure that he learned to speak both Polish and English. Filip had a very special bond with his son. Every Sunday after church, Filip and Adam were either at swimming or soccer or some other activity. Helena was involved in his educational activities and more of the disciplinarian.
Helena noticed that his temper tantrums became more frequent once Adam started first grade and attended school full time. He did not always want to speak Polish at home and answered Helena and Filip in English whenever they spoke to him in their native language. His teacher also mentioned that he often threw a tantrum if he did not like a project the class was doing. After his eighth birthday, Filip and Helena had their first major concern about Adam’s temper. They were about to start their dinner when Adam reached for his third cookie from the plastic cookie jar on the kitchen counter. Helena asked him to stop in a stern voice. Adam had already been warned when he had reached for his second cookie. Adam threw the jar at the coffee table in the family room and shattered a glass vase in shards throughout the room.
Adam screamed at his mother, “You are mean and I hate you and I am not Polish like you. You cannot make me a Pole.”
His parents were stunned. Adam was confronting them with their proud Polish heritage, their culture, and their lives. Filip rose from his chair still in shock, picked Adam up, and locked him in the bathroom until he calmed down and apologized. Helena could not sleep that night. She worried where the anger was coming from and whether something deeper was wrong. Helena and Filip were a loving couple and never raised their voices. Filip did not think it was serious and said it may just be a passing phase.
Unfortunately, Adam’s moods continued. At times he was affectionate and tender, and then he would rage over trivial matters. Helena and Filip began to receive complaints from his teacher. They reasoned with him and also punished when necessary, but it did not seem to make a difference. They discussed his behavior with his pediatrician, but the doctor assured them that his aggression could subside as he got older. They wished their doctor was right.
Helena and Filip’s first glimpse of real danger happened when Adam was 13. Helena and Filip were watching the news in the family room after supper. Adam finished his homework and joined them. He started to get restless after a few minutes and asked them to change the channel. Filip told him to wait until the news was over. Adam got up and began pacing the floor. He stopped after a few minutes and demanded the channel be changed. Helena recognized the same underlying tone of his voice and expression on his face that warned her of looming danger. Filip ignored him, and Helena remained silent. Adam’s anger was mounting. He screamed one more time and approached the television to change the channel himself. Filip rose and held him by his shoulders in an attempt to calm him down. He was no longer a child to be locked in the bathroom for a time out. Adam wrestled from his father’s grip, turned and punched a framed family photo on the wall with all his strength. The glass broke in pieces, and Adam’s hand started to bleed. All three stood stunned. Adam started to calm down and began crying. Helena vacillated between being angry and feeling sorry for Adam. Filip sprang into action and wrapped a wet towel around Adam’s hand. Adam needed stiches, and Filip rushed him to the emergency room at the nearby hospital. Helena broke down and sobbed in anguish when they left. This was not normal. Something was terribly wrong with their son.
Helena had a serious conversation on the phone the next day with Adam’s pediatrician. He recommended they see a psychiatrist right away. Adam did not resist; he was usually reasonable most days until his mood changed. The psychiatrist met with Adam regularly and suspected he had a mood disorder and possible manic depression. He suggested regular counseling for a few months and then medication if Adam’s behavior did not change.
Adam worsened and began to have difficulty focusing at school. He had always maintained good grades, but he complained about not enjoying some of his classes, did not like certain teachers, found several classmates to be annoying, and often did not want to go to school. Helena did not want to leave him home alone, and she could not skip work that often. Helena’s parents were much older now and helped but were limited. Just before Adam turned 15, he again declared one day that he did not want to go to school. Helena could not miss work, her mother was not well, and Filip had already left for work. Adam assured he would be fine by himself. Helena came home from work in the afternoon a bit nervous, not knowing what to expect. The entire main floor of the house was in complete disarray. Adam had taken out dishes from the kitchen cabinets and thrown them on the floor; he had ripped the pillows on the sofa and tossed them. He was pacing the floor and had a devilish look. He began screaming at Helena and called her names. Helena called Filip to come home and contacted the psychiatrist’s office. He asked her to call 911 and admit him to the hospital.
Adam was officially diagnosed with bipolar disorder, anxiety disorder, and prolonged mood swings. He was prescribed with lithium and other medications. Helena and Filip were devastated to learn about their only son’s mental illness. They knew this illness could not be cured but wondered if he could live a normal life. Could he finish high school, go to college, marry and have a family? The hospital’s psychiatrist was very kind, with years of experience working with young adults. He assured them it was possible for Adam to achieve a stable life as long as he continued to take medications and continue with his counseling. His parent’ support and patience were critical.
Adam was scared but accepted his diagnosis and agreed to take the medication regularly. The medicines made a huge difference, but Adam hated the side effects of lithium. He lost his appetite and felt nauseous most of the time. He did not want his classmates to see the tremors in his hands. He managed to stay focused in his studies. Helena and Filip were relieved when a year went by with only minor and manageable episodes. Their relief was short lived when Adam became convinced that he had recovered from his illness and did not need medication or counseling any longer. Helena and Filip made sure he took his medication. When he had another episode and hospitalization, they learned Adam pretended to take medication but flushed it down the toilet. Adam had one more hospitalization following an acute anxiety attack a few weeks before high school graduation. The pressure of finishing high school and entering the unknown world of college was too much for him. He did not feel ready. His mind was clouded by repetitive thoughts of failure, getting lost and fear of being alone.
Helena and Filip had joined the Alliance for Mentally Ill (AMI) in Macomb County. The organization is a nationwide grassroots advocacy group, representing families and people affected by mental illness. Their mission is improving the lives of individuals and families affected by mental illness by providing support, education, awareness, advocacy, and research. Helena and Filip felt desperate and lonely in their journey with their son’s mental illness. Filip’s family members did not understand what was wrong with Adam. Filip’s brothers felt that he was too easy on his son. Helena’s parents mostly expressed their sadness and concern. Filip and Helena began attending the AMI support group meetings regularly and were comforted by the support of other members and sharing the stories of their children.
I met Filip and Helena at one of the AMI meetings where I had presented the estate and financial planning concepts and strategies for children with disabilities. The presentation included the importance of qualifying for government benefits and planning around maintaining the qualification for the benefits. I remember Helena asking me after the workshop what would happen if they did their special needs planning needlessly if their son improved. I recognized that they had not accepted their son’s illness and were hopeful for his complete recovery. They attended two other workshops organized by other entities, and each time they asked me the same question.
I met Helena and Filip again, this time in my office, three months after Adam was hospitalized for the severe manic attack and infected blisters on his hands. They wanted to discuss Adam’s future plans. When I asked what prompted them to begin his planning, Helena could not control her heart-wrenching sobs. Filip shed silent tears as he held his wife’s hand and narrated the episode with the rubber gloves.
Adam had graduated from high school but was not ready to start college. He was not sure what he wanted to study. His parents were very patient and gently encouraged him to take a few classes at a slow pace. He attended Macomb Community College one class at a time. He started with calculus and then accounting. He preferred evening classes as he often slept during the day. Adam was not confident about driving to school for his classes, and his parents were not comfortable either. They drove him three times a week and waited in the car until he finished. They were devoted parents and were ready to do anything for him. He had to take a break from his studies after his last episode. Adam realized after his last hospitalization that he could not take chances with his medication, and Helena and Filip realized that they could not trust him.
Helena and Filip did not want to be Adam’s legal guardian. They did not think it would be fair to him despite his illness. Adam applied for SSI and Medicaid and was approved based on his diagnosis and records of his several hospitalizations. His parents created a revocable special needs trust for him as well as their own revocable trust, pour-over wills to ensure transfer of any assets not part of the trust with ease, and powers of attorney. Filip’s two nephews, Ryan and Peter, were listed as successor trustees after Filip and Helena’s passing. Helena and Filip both were convinced that this was only temporary. Their son may never need all of this planning or the government benefits for long.
Filip and Helena were concerned about Adam’s financial future even if he improved or recovered. They were not sure when he would graduate from college, if at all. Would he get a job and be able to get along with other people? They wanted to leave as much as they could for his trust. They had modest assets and needed Filip’s pension and savings for their own retirement and old age. They liked the idea of using permanent life insurance to fund the special needs trust. Buying a second-to-die life insurance policy, which insures two people under one policy, was not an option; Helena was not insurable due to her rheumatic heart condition. A policy on Filip’s life alone was expensive. They decided they did not have a choice and had to do the best they could. Their completed financial and legal plan provided them with a foundation for their son and immense relief.
Adam took six years to get his degree in accounting but lacked people skills and the ability to work 40 hours a week. Helena made arrangements for Adam to interview at the firm where she had been employed for many years. They knew his medical history and were empathetic. They agreed to hire him on a part-time basis. His earnings were just enough to maintain his SSI and Medicaid benefits. He drove to work, worked three hours a day, and was able to manage the work environment as well as the type of work. He had a corner table at the office overlooking the window. He was not social, minded his own business but did his work well. His medications and psychiatric counseling were absolutely essential for his physical and mental stability.
Adam had several minor episodes but stayed out of hospital for many years. His life was not exciting, and he did not have any friends. He lived with his parents, and his parents felt secure having Adam with them. His job at the accounting firm was steady.
Helena’s health began to deteriorate soon after she turned 60. She had narrowing heart valves and an enlarged heart. She was always tired, short of breath, and was on several medications. Adam was fearful of losing her, and Helena worried if her passing would send him to a deep end. Helena knew that her son would never be cured of his illness, but she prayed daily for a stable life for him.
Helena passed away in her sleep soon after her 62nd birthday. Adam continued to have minor episodes but stayed out of the hospital for many years. Filip attended the AMI meetings and encouraged Adam to attend their social programs. Adam tried a few times but did not find them interesting. Filip retired at 65. Adam qualified for Social Security Disability (SSDI) as a result of that as well as Medicare.
Filip made every effort to prepare Adam for his life without his parents. Adam wanted to continue living in the same house. It was a modest home, and Adam did not want any changes in his life. Filip arranged for Ryan and Peter, his nephews, and future trustees for Adam to meet regularly, and for them to understand Adam’s needs. Adam had an accounting background and managed his personal income but did not want to know about his trust finances. Filip trusted Ryan and Peter completely but also felt comfortable knowing that my firm would work with them to manage the trust assets.
Filip passed away 15 years after Helena’s death following a brief illness. Adam was 43. He had never lived alone but was prepared. Ryan and Peter called him every day initially and then regularly. His mental illness may never be cured but he has a stable pattern of life.
A few changes have taken place since Filip passed away five years ago. Peter was transferred for work to Wisconsin and resigned from his trusteeship. Ryan is the sole trustee now and has made it a point to attend AMI meetings occasionally. It has been important for him to understand Adam’s illness in order to help him. Ryan has arranged for a woman to visit Adam for a couple of hours every day. She makes his meals and keeps the house clean. Adam is still fastidious about his environment and particularly about cleanliness. Even at work, his desk and chair position cannot change. He parks at the same spot every day and gets very upset if he loses the spot. His coworkers understand him and have accepted the way he is. He takes long walks in his neighborhood, reads, and watches television. He visits his cousins occasionally, and Ryan always invites him on important holidays.
Adam had a brief hospitalization a year ago. He had been feeling depressed, agitated, and lost his appetite. He called 911 and admitted himself to the hospital and informed Ryan. He continues to take lithium, and newer medications have also helped him. His parent’s planning along with his government benefits continue to provide a comfortable life for Adam. Helena and Filip are caring for their beloved son even in passing.
Insights from the Kaminski family
Denial and delay in acceptance of mental illness of a family member results in a crisis situation and chaos. Approaching a psychiatrist early on when the first symptoms appear may help avoid later crisis.
Mental illness may not be cured. Long-term planning may be necessary assuming that the person may not be able to work and need government benefits, especially for health insurance. Adam could only work part time and did not receive any benefits. Medicare and Medicaid were very important for his health.
The trustee of a trust for a mentally ill person has a difficult task. They may not always have the cooperation of the person for which they are caring. The trustee may need to understand the illness and find ways to work with the person with patience and compassion.
Proper funding of the special needs trust assures a quality of life for the person with a disability. Adam is able to continue to live in his own home and work part time because of his parent’s foresight and proper planning.
Minoti Rajput, CFP, ChSNC, is the founder and principal wealth advisor of Secure Planning Strategies. She has been working with families with children of special needs for over 30 years and is a frequent speaker on various topics related to special needs planning. She is also the author of Beyond a Parent’s Love.