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My Home Life – Looking Through a Concave or Convex Mirror?
INSIGHT – “IS THE ANGEL UNAWARE, UNAWARE”
I woke up one morning, one which did not appear any different than usual, except my father and mother surprised us by saying that we were going to have a new baby come into our family very soon. How happy I was! Before I went to bed that night I said a little prayer for the new baby to be. I prayed:
"Jesus, friend of all little children, bless them and keep them healthy, especially our new baby to be".
I said this prayer every night right up to the day the baby was born. What an exciting event, everything went well, we could not have been happier. The baby's name was Kevin.
Life went on and little seemed wrong, but as the months passed, Kevin did not seem to respond to noises like the other five of us did. My mother and dad thought there might be a problem so they took Kevin to the medical center.
Mom and Dad came home and were crying. We were in the kitchen when they told us that Kevin had an intellectual disability. I was shocked and began to cry for Kevin because he somehow seemed helpless and yet he had been struck with some rare disease. After crying for a while, I thought about all those nights praying to Jesus and wondered why He had done such a thing to my brother. Then, I looked at Kevin and he smiled almost as if to say, "Yeah, It's Okay, I'm still me". After that Kevin truly became the backbone of courage for us all.
I watched him begin to walk, scamper in and out of the cupboards, find the most unusual things to get into and begin to talk. Much time was spent watching, responding and tending to his needs. The sacrifices were not great because of the twinkle, glitter, love and warmness that is in his personality.
Throughout his years of being a child, youth, teenager, young adult, middle-aged adult and now senior citizen, I have seen Kevin be a comfort, a source of strength, a guru, an uncle, a brother and a friend to us all. His belief in himself and his model of life surely makes this angel unaware, one who was never unaware.
In memory of you and your future, Kevin…
I wrote this as a young boy and submitted it to my English teacher my first year in college who could not grade me because he got too emotional in reading it.
My brother, Kevin, by the way, has Down’s syndrome and is one of six brothers with age range differences of 23 years. This experience of being a part of my brother’s life was my first venture into having anything to do with mental health.
To back up a bit so you have a glimpse of who I am, I was the youngest of my two older brothers and the oldest of my three younger brothers. My Dad was a perfectionist who suffered from control issues his whole life. My mom suffered from being depressed and found it difficult to show affection and often appeared numb to life. My two older brothers are quite normal and have been successful throughout their whole life and each been married to the same wife for over 50 years. My brother three years younger than me has been successful as a crisis school counselor, now retired, plays lots of sports, currently in a committed long term relationship, enjoys being the life of the party and is working hard at his sense of wellbeing. My second youngest brother, who was estranged from the family, came out of womb kicking and screaming and for the most part has been a problem person his whole life but somehow has survived and was living from what I know a reasonable life. He has been through the wringer in the mental health system – with heavy emotional and deep-seeded anger issues that have never been resolved with his family.
My father wrote in my high school year book, “All I care is that you do your best.” I have lived my life to this end – worked in a diverse set of industries, married twice, enjoyed a variety of sports, and been seen as a crusader rabbit. Currently, I am a licensed clinical psychologist doing private practice and occasionally some contract jobs requiring my psychological and organizational development expertise. My first wife who I was divorced from after twenty three years of marriage was a lesbian who I met while in college in which we had two children (a boy and a girl – each hugely successful in their own right). My first wife died at the age of sixty from a rare form of breast cancer. My second wife who we have been married now for twenty-seven plus years re-met at our twenty fifth high school class reunion in which we were high school sweethearts. She has three sisters and two brothers – two of which have died but all struggled with a mood disorder. Her dad was a successful business man and her mother was a very giving person. My second wife is a loving and compassionate person who manages her emotional issues well even when stressed.
I only go through these things so you have a context for who I am as I relate to you some of the many episodes I have experienced as a mental health professional working in this crazy world called “life”. People will say I am quiet, reserved and respectful who can be very articulate in explaining complex issues – a person who is focused, concentrates well, interesting to listen to when willing to share, reasonably intelligent, competitive by nature, decent athlete, and who loves to play cards, fish, hunt as well as play tennis and golf. By Myers Briggs Type Indicator (MBTI) standards, a pretty solid preference for being an INTP (internally focused, likes concepts-sees links and trends, makes judgements based how it affects others and enjoys ambiguity and flexibility) but still with the ability to appreciate other preferences and “switch hit” effectively in using other non-preferred preferences. Not too good at reading games people play to win in business or maneuvering around small politics in which he cannot give up his crusader rabbit role. Some would say he has the morale courage to stand up for what is right.
SHORT STORY – KEVIN
Kevin, who is fifty nine years old and qualifies for old age, began showing signs of Alzheimer’s and currently is in a nursing home having little or no quality of life, is incontinent, non-ambulatory, wheelchair bound – put in front of a television for 3-4 hours a day, spends the majority of his time in bed, typically sits in his feces, has gum disease and sees our oldest brother and wife daily for 2 hours – truly a loving commitment. Wow- you might say…how did he get here? Let me bring you through his life in the Wisconsin (WI) Mental Health support system. Up until the recent past WI was touted for their humanitarian concern for the indigents of their state. Kevin, in particular received outstanding special education and vocational services as well as participated in Special Olympics. He has lived with his brothers, and been in foster care living with some of the most giving and God-fearing people who truly loved Kevin.
Kevin would have been diagnosed with a moderate intellectual disability for most of his life. He is now functioning at a severe level of intellectual disability due to several complications that entered his life about three years ago. As Kevin’s adaptive skills became an issue where he was having difficulty taking care of himself, alternative housing arrangements needed to be found. He was placed in a group home with many old people where there was no stimulation and most just sat around doing nothing. I got a call from my oldest brother (Kevin’s executer) who went to see Kevin and he indicated that Kevin was listless, no longer walking, not eating, and had lost 25 pounds. We decided to immediately have him be seen by the emergency room at the local hospital.
What transpired next floored me! I was informed by the attending emergency doctor that Kevin had cracked ribs, had traumatic hematomas on both sides of the head (brain bleeds) and an open ulcer on his stomach that was infected. The Doctor and I were sure this looked like a severe case of neglect and abuse by the group home caregivers and the agency representing him. The agency and group home were investigated (after much prodding by us brothers) by the State and had to pay a fine but were allowed to stay open. Kevin as previously stated, now lives in a mediocre nursing home close to my oldest brother’s home, never to go back to that disastrous evil place that eliminated any quality of life he had left.
Wisconsin, a proud state, one in which I grew up in, devastated mental health services by cutting costs to such a level that what happened to Kevin became a nightmare. I am sure Kevin’s story is not the only one to have occurred. Lack of timely Quality Assurance + Lack of Quality Care plus Severely Reduced Case Management plus Lack of Continuity of Care equals incompetently delivered mental health services causing outcomes similar to Kevin’s. Kevin did not deserve this and his situation should have been completely avoided. For the rest of his life he will never walk again and not be as responsive as he was prior to this debacle. If it were not for my oldest brother’s attending to Kevin every day, the care would be even more substandard than it is. The saga continues...
Postscript – Kevin died March 12th 2018 at 5:55 am.
Rick as mentioned is my second youngest brother. Currently he is estranged from the family – his choice. He has burnt every bridge with his mom/dad when they were living and each of his brothers. He has never taken responsibility for his actions throughout his life. He has blamed everyone else for his life problems. He has a huge persecution complex. Did he have a less than an ideal upbringing? To be sure, but he did come out of the womb kicking and screaming. He was a difficult child.
Rick was around five years old when Kevin was born and lost out regarding getting the attention he needed growing up. His two oldest brothers were already out of the household so he mostly had my younger brother and myself to rely on. Neither of us gave him the respect or empathy he needed nor did my parents who were overwhelmed with dealing with Kevin’s needs. His family support group was basically nil. His coping strategies were to act out to get attention and I believe to this day even though he probably will deny it that he resented Kevin. His pent up anger, hurt from not being “loved” and feeling lost to the world got to him.
Up to and through attending high school Rick (“Dick” growing up – he hated that name due to its innuendos) was always getting in trouble. He would get in fights, do drugs, be promiscuous, steal, and travel with the wrong peer group. He stole and it seemed like he had no conscience. He did attempt to learn and play tennis but when he felt he was not as good as his brothers he gave up quickly. He was not a good student but was smart – just never applied himself and really did not care. He was disobedient to his parents and made their lives miserable - “a holy hell.” He never did graduate from high school but did receive his GED as an adult. After I left for college, things became completely out of control to include fighting with my parents and being both physically and verbally aggressive with them.
Each of us brothers have tried hard to help Rick throughout his life, especially when mom/dad were at their wits end and no longer knew what to do. When on leave from the Army, Rick came to visit his oldest brother. During this time Rick was having major emotional issues and my oldest brother was caring and empathetic but Rick would have nothing to do with it. After my oldest brother reached out to Rick, two days later, Rick called him from a hotel where he had shot himself in the leg. Whether it was accidental or not, Rick had mishandled a firearm. My brother rushed to his side and took care of him until he recovered. Rick never said thanks and basically blamed the family for his misfortune. My oldest brother has for years reached out periodically to Rick but Rick has not reciprocated.
My second oldest brother took Rick in and had him be part of his family for about a year. After many interventions, Rick ended up in jail for some major misdemeanor. My brother got him out of the charges but the mental health professionals there diagnosed him at that time with schizophrenia. Because of the turmoil caused by Rick, my second oldest brother had to give up on him for the sake of his own sanity and the safety of his family. Rick and he have never been in touch since – going on 40 plus years.
Rick lived with me twice. Once when he became catatonic and nonresponsive socially where all he would do is stare out into space. It took a year and a half but he became responsive and started to act appropriately. At that point, he decided it was time for him to leave which he did and he decided to join the military. During the time with him my kids and wife were always on pins and needles – they were apprehensive and nervous around him, never knowing what kind of act they would get from him. He left without saying thank you or showing any gratitude.
Another episode occurred while Rick was in the military service. He was stationed down south about 100 miles from where we were living and came to stay with us for about three weeks while on leave. He needed one of my cars when he went back to the base because of some set of events that he needed to attend but required some distance to get there. Reluctantly, I gave him the car to use with the promise from him that he would return the car at the end of the month.
A week later, I received a call from him that he was in jail and charged with strong arm robbery. Apparently according to Rick, he had just come out of a bar and two guys who he knew, but did not know they had held up a person outside of the bar, gave him a ride back to the barracks. Within ten minutes of leaving with them they were picked up by the police and arrested for strong arm robbery. Rick because of association of being in the car was arrested with the two individuals identified by the victim. Well, to say the least, I was shocked to hear this!
I called work and said I had an emergency and needed to take a week off. I drove down to where he was jailed and found out also that the car I lent him was impounded. After talking to Rick, I got him a private lawyer to represent him. Paying for his lawyer, getting my car out of impoundment, and paying for his bond to get him out of jail, cost me well over $5000. After getting him out of jail and making sure I got him back to the barracks, I was not sure he would show up for his trial date in two weeks. I returned home for this two week period to only return two weeks later to the barracks to make sure he attended his court date. Talking to his lawyer about the situation Rick got himself in helped prepare his lawyer for when Rick had his case heard. After listening to the lawyer present the case and hearing from the policeman who arrested Rick, the judge threw out the case and Rick was let go with no charges. He returned to the barracks and resumed his life as an Army enlisted man. To no surprise there was not even a bat of an eyelash to say thank you…
The story continues with my brother just younger than me. Rick after leaving service, lived with him for a while. During this time, Rick went unknown to my brother into his mailbox and took out a request for a credit card. Rick applied for this card using his brother’s name and proceeded to use it and had charges of over $5000 on it. When my brother found out what happened and realized Rick had used this card without his consent, he reported Rick to the police but he never filed charges. He was able to get the charges against the credit card removed but even as recent as of two years ago this debt followed him even though Rick had been identified as the thief. Rick was kicked out of the house to never return again. Rick’s last comment was that he deserved the goods and said he planned on paying my brother back. To this day, this credit card debt has not been paid by Rick.
My last encounter with Rick has been about a decade ago where I needed some personal information about him for a security check that was being completed on me. In that phone conversation, I expressed he needed to take ownership for the problems he had and stop blaming everyone else for his shortcomings. He said, “It is about time I talked openly and honestly with him,” and he hung up. I never have heard from him since even though somehow he is a contact with my wife through Facebook. October 27, 2017, Rick died from complications of over a year long bout with trying to overcome pneumonia and Hepatitis C. After finding out details about Rick being taken to the hospital and being informed that he probably would not make it, I called his “son", Josh (Rick never formally adopted him from his first marriage) who was at the hospital and he told me his Dad had just died. Listening to a heartbroken son’s grief was extremely difficult but I was as empathic as I could be. Rick is be cremated and his wish is to be buried back in Wisconsin next to his mom and dad.