A Few Words From Mom...A Caregiver's Legacy
by Linda (Rippee) Privatte
My twin, Catherine (CJ) Hanson, and I continue to tell true stories of our journey to find treatment and housing for our blind, physically disabled, and seriously mentally ill brother that has also had a traumatic brain injury. Mom has remained a constant supporter of our efforts, although at 80 years old, is quiet in the background at this point in her life. We have told Mark’s story. We have told our story. Mom said she had a few words to say and I have offered to help her say them. Lou Malinda Cosby was born to Willie and Linnie Cosby in Lindsey, Oklahoma on January 1, 1940. She was a New Year’s baby. She was the youngest of four daughters. Her family history was that of farmers and farm laborers. She was born in a log cabin with no electricity or running water. I asked her who delivered her, a midwife or doctor. She gave me a funny look and blurted out, “Mama did!” The family she was born into had been raising their family during “the Great Depression” with 3 daughters at the time of Mom’s birth. They had been moving around to different labor camps and farms to find work for the family.
“My family had lived in tents at these labor camps. My family relocated many times back and forth between Oklahoma and California. Entire families, 3 generations of grandparents, parents, even their young children were working to survive along with thousands of other families at the time.” “I was taught family loyalty, family values, help others, share, the importance of counting on each other. I grew up without questioning that family takes care of family no matter what. I learned that lesson when at the age of nine when I was told that I had to start working in the labor camps and fields while still attending school full time along with my older sisters. I worked in the hop’s fields. I picked cotton in the fields. I stacked broom corn, pruned, thinned, and picked peaches, corn, apricots, grapes, and boysenberries. The work was hard in the fields. Stacking broom corn was the hardest and would make you itch from head to toe! I started with picking cotton at 9 years old.”
(Lou Cosby at 9 years old working in the fields)
It was a time when everyone knew hardship and every person, even children knew when they were expected to step up or step into someone else’s shoes. Family values, work ethics, responsibilities, selflessness, and struggles were the only thing she knew as a child. After many years, her family finally settled in Modesto, California, and began to pull themselves out of poverty.
(Mom, Aunt Pauline, Grandpa Willie, Grandma Linnie, Aunt Estelee, & Aunt Claudia)
Mom said, “At this point, I guess we would have been considered homeless for many years during and after the Great Depression. We were not considered worthless, disgusting, horrible people like the homeless are today. We were like thousands of American families during that time trying to stay together and survive. We were not discriminated against for simply struggling and working towards a better life. No one cares about the homeless or why they are homeless now.”
Just as a better life was right around the corner, more tragedy and struggles soon followed.
“My dream was to become a nurse. I paid attention in science and biology. I took a first aid class. When I was 15 years old, I was doing yard work in my front yard. Two boys I knew were racing up and down the street. A rollover accident happened, and my friend was thrown from the car into my front yard right in front of me. My friend was nearly split in half the length of his body. I screamed for my Mama to bring as many sheets and towels as she could and soak them in saltwater. My Mama soaked the sheets in saltwater, and I covered the boy with them, and I laid down on top of him and held him to cause pressure on the wounds.” I could not save him, and he died in my arms.”
(Grandma Linnie and Mom 1955)
The emergency personnel was impressed at the lengths that a 15-year-old girl went to try and save him. This was a story I had not heard from my Mom before… or maybe I was not listening till now.
The following year Mom would be 16. Without her knowing it, her life was going to change forever and in many ways.
Mom said, “I had met and married James Thomas Rippee - 17 years old at the time. Coincidentally, his family had also come from Oklahoma to the Modesto area in California. Our dates consisted of church and family. We were married in 1956. Your dad only had an 8th-grade education, so he enlisted with the United States Air Force. I was forced to quit school because I got married. That year I became pregnant.”
(James Thomas Rippee, 1956)
They were making plans as any newlyweds would have. She would not know that we were twins - until right before our birth. Just as life was changing in many ways for Mom - another tragedy struck. Plans were thrown into reverse. Her Mama announced that she had breast cancer. In 1956 this was usually a death sentence. To a family with a history of no availability to medical care throughout their lives… the family understood from the beginning that this was indeed a death sentence for Linnie Cosby.
Mom said, “A mastectomy was done, and they closed her up and told the family that they could not get all the cancer as it had metastasized and had even reached her brain. My father and sisters needed to continue working 12-hour shifts at the canneries. I knew what shoes I was being asked to fill and I would now become a nurse and full-time caregiver to my own Mama, and she was dying.” It did not matter that she had only completed 10th grade and was not trained as a nurse or trained in wound care. Her family had instilled in her to step up and step into those shoes. She knew about family obligations.
(Linnie and Willie Cosby)
Mom said, ”I did not feel resentment or anger towards my parents. This was what families did. I knew what was being asked of me and accepted it.” She knew there would be no medical professionals coming to help. “We did not have medical care growing up.” Mom said. She was several weeks pregnant (unknowingly with twins) newly married and now a nurse and caregiver to her own Mama until the end. “After the mastectomy, my Mama was sent home with no treatment, chemo, or radiation. The doctors at that time felt it was futile and after the first surgery told her and the family there was nothing they could do. From that moment on I was my own Mama’s caregiver at 16 years old.” Our father was stationed in a few places and Mom remained as a caregiver to her Mama. The pregnancy complicated the caregiving. Mom told me, “I was a teenager, I was overwhelmed by the wound care and medical care that I was responsible for. I felt terrible and had gained 60 pounds! I felt something was wrong. My doctor did an X-ray because I insisted. He told me I was having twins! He said their hearts were beating simultaneously. That’s when and how I found out I was having twins!”
Our birth would prove to be a near-death experience for all three of us only 3 weeks later. Mom went on to care for her Mama daily until the day she passed out in the bathroom one day and was taken by ambulance while having convulsions that involved all 3 of us at the same time. Mom was in a coma for 3 days. She was having convulsions and so were Catherine and me. “They called Dad home from Alaska where he was stationed, and the doctors told him… I can’t do anything, and we may lose all 3 of them.” Without proper medical care, Mom had no idea that she had eclampsia for several weeks and her kidneys were failing. “When I woke from the coma, they decided to induce labor to try to save both babies, and miraculously we did, all 3 survive. After that ordeal and recovery, I went back home to my Mama and continued to be her full-time caregiver with 2 babies.”
When our Dad received orders to go to South Carolina, Linnie, our Grandmother begged her daughter to go be with her husband. We were then 18 months old and Linnie knew what was coming soon. Mom resisted leaving. Her Mama knew what was best. Three months later October 12th, 1958 her Mama died at home at the age of 51 years old. Mom was not able to attend the funeral due to being in South Carolina with her husband.
This began her married life independent of her parents and eventually having another daughter, Robin, and finally their only son, Mark. He was born in April 1963. We were all in the car on the way to the hospital. Mom and Dad still needed to get gas and drop us girls off at an uncle’s house. In those days gas was pumped for you, oil checked, and windows cleaned. It was obvious to Catherine and me that Mom was going to have this baby in the car if this guy did not hurry up! So, we stuck our heads outside the window and hollered, “Hey you! My Mom is having a baby right now! We were both saying it now and this guy started running around the car at lightning speed! We were already looking out for our brother as Mom barely made it to the hospital before he was born 30 minutes after parking.
(1963)
Mom remembers Mark as a boy… “As extremely sweet, cute, and affectionate. He was very independent. Mom mused over his first day of school, coming home on the bus the first day of school he was put on the wrong bus and when the driver came to the end of the route Mark refused to get off the bus! He told the bus driver, “I do not live here!” “He pointed giving the driver directions to our house. When he arrived at the house there was no one home because I was already out looking for him. He went to a neighbor’s house and said nobody was home, so he came to get himself a babysitter!” Mom assisted our Dad with many of his jobs over the years and raised her 4 children into adulthood. She also was a full-time nanny and daycare assistant for many years. Mark was the youngest and their only son. He had worked with Dad in his businesses, and I had employed him where I was a property manager. At the time of his original accident, he was working for a large construction company. He was 24 in 1987 on Father’s Day when he crashed on a motorcycle avoiding another car and hit a parked antique grain harvester. The hospital called Mom and Dad. They hurried to the hospital ER. Mom gave me her account of arriving at the hospital that night. “As we walked in, the doctors surrounded Dad and me, and they were all asking if we wanted to go in and see him. They were preparing us… that he was dying. One doctor told us that he was going, to be honest with us and felt that he could not be saved. We yelled at them that no, we would not go in to see him just get in there and start working on him to save him. One doctor stayed behind as the others ran to help. He explained to us that even if Mark survived, he would be blind and have brain damage. There was no doubt about that. We told him to just save his life and we will face that when we come to it! At that time, we had no idea what brain damage would mean to Mark’s life. We looked at the blindness as the big tragedy that was going to change his life. Dad and I thought Mark wouldn’t be able to cope with the sudden blindness, neither one of us could understand what was coming.”
I remember feeling that too at that time. Catherine and I were 30 years old at the time of his motorcycle accident. Mom was 47 years old. All 4 of her children were now adults outside her home. That night as my twin Catherine puts it, “Mark was shattered that night and so were all our lives.” Our family thought the blindness would be more than Mark could take. At that time, we could not foresee what the true tragedies in his life would be. Thirty-three years later - we all wish we had known then what we know now. Dad unfortunately decided that Mark would be brought home for the family to care for, rather than sending him to a State Rehabilitation facility as recommended by doctors. This was all Mom had ever known since the age of nine. Family obligations, stepping up, and into whatever shoes needed to be filled to help your family. Mom told me, “We didn’t really discuss it. Dad said it, and I accepted it. Dad made the decisions. I was going to be my son’s nurse and caregiver. I was terrified and overwhelmed at the thought that it may be for his lifetime and mine. I still did not understand what the doctors meant by brain damage and how it was going to change Mark. No social workers or mental health professionals gave me advice for his care. Catherine stepped up and handled his paperwork. The hospital admitted to us that they had never handled a case before where a patient went instantly blind and had a massive traumatic brain injury with loss of 1/3 of the frontal lobes and he had injured every part of his body.”
(Mom and Mark, Christmas 1987)
I asked Mom if the hospital trained her for the extensive care she was going to need to know how to do on her own at home. She replied, “No training, but the 3 months he was in the hospital I watched everything the nurses did daily with his care. I had no way of knowing then, that he would need over 55 more surgeries and need my nursing abilities, trained or not! I didn’t know that it would take me, you, your sister, and many others to be able to care for Mark 24 hours a day.”
(Mom and Mark, June 1988)
Our Dad died in 1994 only 7 years after Mark’s accident making Mom a widow at the age of 54. Mom, Catherine, and I continued our caring for Mark. In 1997, Mom moved into my home with my husband and 3 daughters and we made her part of our family. After Mom moved in, I had a serious medical condition that required long stays in the hospital and major surgeries. Mom was still caring for Mark full time. Mom took over my children, my house, and my care. When I had the last surgery there was a complication on the day I was to be released after 3 months in the hospital. My abdomen had a 14-inch incision that had to be opened at a frantic pace, 40 large staples, and 80 stitches were pulled out. When the doctor straddled me to remove them, I knew I was in trouble. It was decided by the doctors that the wound would be left open to heal by itself. After 3 months in the hospital, they were going to send me to a skilled nursing home, as I would have a large wound to care for that would take months to heal. I wore a medical girdle to hold my intestines in, and my huge wound would need to be cleaned and packed 3 times a day. Infection was a very real concern. Mom did not hesitate. She told the doctors to teach her how and she would do my wound care at home. They were talking another 4 months or so, which became 6 months for the wound to close. Mom said, “I knew you had been away from your children too long and I made the doctors make a video to teach me the wound care necessary to do at home. I will say, I never imagined I would have my hands 3 inches deep inside my daughter’s body and have her life in my hands.” Mom stepped up and into those shoes that needed to be filled once more. She may have saved my life. Also unknown to us was the serious mental illness that would show up a few years after Mark’s original accident. We all contributed. We did whatever it took and between us, we took care of Mark for 20 years, until the serious mental illness… was beyond our abilities to control without mental health intervention and treatment that we had no legal authority to initiate. When the voices, hallucinations, paranoia, and delusions took over Mark’s life, Mom, or any one of us was subjected to verbal abuse, injuries, and traumatic experiences we could not control. The ’80s and the ’90s were full of mental health crisis, suicide attempts, various living arrangements, evictions, fires, attempts to jump from moving cars and overpasses, injuries to family members trying to intercede. For those 20 years, Mom was Mark’s rock. Catherine and I helped care for Mark too, but it was swallowing Mom up. She continued to nurse Mark through 55 additional surgeries, over 20 were further brain surgeries. This went on and on. She lost friends and extended family members that could not comprehend the complexities of serious mental illness and worse - they could not understand why Mark did not think he had a mental illness and why he would not accept or seek help or treatment. Our family came to be well educated on “Anosognosia," the name of this condition. Catherine and I continue to educate others on this subject. “Lack of insight” into his own mental illness meaning his brain will not allow his mind to believe or know that he has a serious mental illness. Nearly 50% of all people with serious mental illness have this condition. Mom said, “I never knew this word, I only knew my son did not understand that he was extremely sick. He would not voluntarily look for any treatment. I was only told that he was legally allowed to refuse and that it was his right to refuse help. I was abruptly told this many times by Mental Health and Law Enforcement officials during Mark’s many suicide attempts and mental crisis’s over the years." After twenty years of the family caring for Mark - in 2007 the serious mental illness had become so pronounced that it was obvious we could no longer control Mark’s actions. Many things led up to Mark becoming homeless at that time. Mom was a shell of her former self and Catherine, and I were now worried about her physical safety as well. Mark’s delusions were causing him not to believe that Mom was who she said she was…his Mom. Through the door, he threatened to kill her with an ax if she entered the apartment. She believed he might as she indeed saw the ax. Mom said, “I left tired, helpless, and defeated. His mental health crisis continued. Delusional he called the fire department saying there was a fire and then he went right outside the door and set a fire. Emergency vehicles came. It was obvious to all that he was in a mental health crisis.” As a result of the events that day - we insisted that Mom could no longer care for Mark while alone with him. We realized Mom was going to get hurt even if Mark did not know he was hurting her. Mark lost Mom as his full-time caregiver, lost his Section-8 voucher, IHSS caregiver all in one day, and was evicted. Now he was homeless in his hometown. Three years earlier, my twin sister, Catherine announced that she had breast cancer. The news was devastating to hear. Mom knew only too well the battle her daughter faced. Now Catherine’s own daughter would become her live-in caregiver to this day. She would go on to battle multiple illnesses and could no longer physically help us care for Mark as she had in the past. She has remained homebound for many years now, but actively advocates along with me for Mark and others with serious mental illness. Mom could no longer take care of Mark when alone with him, and it became even more dangerous for her to find him on the streets to care for him. I have never driven due to having legal low vision myself from “Amblyopia” since I was a child. Mom began driving me to search for Mark and I began caring for Mark out on the streets. Mom was afraid of his behavior at this point and remained in the car often, watching us but too scared to interact with him. She drove me to search for him from 2007 till 2013 until she no longer was able to drive and my own children were old enough to drive me. I continued alone caring for Mark on the streets and relaying Mark’s situation to Mom and Catherine. Mom announced that she now had breast cancer. I now became Mom’s caregiver. In 2013, she could no longer go to Mark out on the streets. Catherine fights additional cancers still today but remains in the fight for Mark’s treatment and care as well. I continued to care for Mark out on the streets until he was hit by vehicles in September 2019 and hit again in February 2020. Today he remains hospitalized with the extensive injuries he sustained. Mom said, “He has been injured so many times! So many surgeries! How can people beat and rob a blind man as often as it happens to him?” I told Mom she could count on Catherine and me to continue to advocate for Mark. She replied, “I know you both are trying! The things you both have done! You both have surprised me several times with your efforts. I am so proud of you, even though no one will help Mark.” Nothing is sadder than hearing your own Mom admit feeling defeated and hopeless. When I began speaking publicly at the Solano County Board of Supervisors meetings there were three times when Mom was able to attend and speak about her son. The first time was May 22, 2018: (A few words from Mom to the Board) “I took care of my Gravely Disabled son for 20 years full time, along with my daughters and live-in full-time caregivers. I know better than anyone in this world, what it takes to care for him full time. It took 4-5 people full time to care for him and try to control his actions and his violent behavior. We all tried but were not successful." “Our family was not prepared nor trained to handle my son, especially because we had no legal authority over him. I cared for my son and for twenty years took care of all his medical needs due to 55 surgeries and too many brain infections to count. No, I was not trained for this, but regardless I was his nurse for over twenty years. It is not easy for me to say that my son was abusive to me, but I know only too well that it was the traumatic brain injury, frontal lobe damage, and the mental illness causing this behavior, not to mention the total blindness!” “I do not want my son living or dying on the streets. The current laws are preventing us from finding a solution.” June 12, 2018: (A few words from Mom to the Board: In support of AB 1971) “Many of his suicide attempts might not have happened if we could have forced treatment and medication on him… but the laws prevented this from happening! Many of his violent outbursts and abuse towards the family might not have happened if he had been forced to take medication… but the laws prevented that from happening! We believe that if he had been medicated and received treatment, the outcome of his life could have been entirely different… but the laws prevented that from happening! As his family, we could have been more involved in his medical and mental care... but the laws have prevented that from happening! “I am losing hope that I will live long enough to see laws change concerning the mentally ill, traumatic brain injuries and the gravely disabled - so that other families do not go through what our family has just trying to do what is right… but prevented by law from doing so!” April 23, 2019: (A few words from Mom to the Board) “I would like answers to why my son, James Mark Rippee does not receive any mental health services in Solano County? While you have not given those answers for another year now, my son has slept on the streets another 365 nights, blind and gravely disabled. I have lived nearly 80 years now and I am a witness to the failure of Solano County to give any help to my son for over thirty years! Mark not having any mental health services is why he is where he is today, the streets!” “Anyone that meets Mark knows he needs help. You really do not have to be a mental health professional to know my son needs mental health treatment and supervised housing of some kind, somewhere! This county is lacking in mental health facilities and services for the severely mentally ill!” So, Mom had a few words to say and I was listening. Mom is not a woman of many strong opinions. She does not speak out often. I have never had an argument with Mom in the 23 years she has lived with my family. Mom does not complain she just gets through it. She is a loving, caring, compassionate, and accommodating person. She conforms to whatever is needed from her. She is however 80 years old and I do not want her to be afraid to speak her mind about her son Mark, and serious mental illness. Mom wanted to say… “I was uneducated and had no medical training. I had no one to teach us about the brain damage from his TBI or the Serious Mental Illness that would come later. Calls to the police for crisis assistance only led to more arrests. We would request 51/50’s and they were ignored. Suicide attempts were not taken seriously. My son’s illness was never taken seriously by the Mental Health system or the professionals that have been trained to recognize and treat it. I started working at 9 years old picking cotton and worked throughout all my school years until I became a caregiver to my Mama. I never became a nurse as I had planned.” Oh, yes you did Mom, through our eyes. You filled the shoes of the medical and mental health professionals that were educated and trained but were nowhere to be found when needed. You tried to care for Mark with no legal authority and our laws tied your hands, just as they tie our hands still today. Mom had a few words to say, and I hope the world is listening. Mom had a few words to say and I was listening.