Letting Go: Holding the Family Together Through Mental Illness

By Ronald Belanger

I'm just an average guy. I expected to live an average life. This is the story of how I dealt with the disabilities of three of my children and the developing mental illness of my wife. I want to encourage people living through similar challenges to keep going. I learned to navigate the system and get the help I needed for my family. I hope some of what I learned can be helpful to others. Everything is a process.

• Language: English
• Publisher: Lulu.com
• Release date: Dec 5, 2011
• ISBN: 9781105312106

Book preview

Letting Go: Holding the Family Together Through Mental Illness

Letting Go

Holding the Family Together Through Mental Illness

Letting Go

Holding the Family Together Through Mental Illness

By Ronald Belanger

with Rosanne Gulisano

Copyright © 2011, Ronald Belanger with Rosanne Gulisano

Updated with Epilogue 2015

ISBN 978-1-105-12099-2

First Printing: 2011

Second Edition: 2015

Ordering Information:

Order Soft Cover Book or Digital copies at:

Lulu.com,

Your favorite book seller,

Internet search the full title for available book sellers.

Self-Published by Ronald Belanger,

Naperville, Illinois, USA.

[e-mail]

Dedicated to Charles, Kathryn,

John, Brandi, and Rebecca

Acknowledgements

Over the past few years, four lawyers who were involved with the family for divorce, guardianships, trusts, wills and other legal matters, and a doctor who worked with the disabled children for over twenty years, recommended that I write a book about the family situation. I believe there are a lot of tips and advice included in these pages that other families could use in dealing with their own situations. Several people have told me that it would make a good read.

My kids, Charlie and Kathi, never thought that I would write a non-fiction book. After finally letting go and completing the divorce, I decided to give the book-writing a try. Looking back on the better times and recognizing, in writing, the current status, has helped the healing process. My family was great in providing me with assistance and support.

I wanted a local writer to assist me so that she could actually interview many of us. I found Rosanne Gulisano ([e-mail]) through a web search and interviewed her to help write the book. She did a tremendous job, including using editor Corinna Sullivan to critique and make the text appealing. I thank them both for their work and guidance in writing the manuscript.

Introduction

I’m just an average guy. I expected to live an average life. This is the story of how I dealt with the disabilities of three of my children and the developing mental illness of my wife. I want to encourage people living through similar challenges to keep going. I learned to navigate the system and get the help I needed for my family. I hope some of what I learned can be helpful to others. Everything is a process.

Based on my experience with my wife, the current H.I.P.A.A. law protecting a patient’s right to privacy is a terrible idea. It keeps family members who want to help from knowing what is going on with their loved one. It stands for Health Insurance Portability and Accountability Act. I call it Help Idiots Plan Atrocious Actions. Everything was kept secret from me—her medical and psychiatric doctors could not reveal the diagnoses or suggest treatment without her permission and she refused to give it. The mentally ill patient hides information that cannot legally be shared, so no one can help. He or she doesn’t think they need the drugs and stops taking them. He or she can plan outrageous, attention-seeking actions. The legally imposed secrecy means they can avoid getting help and care from the people who most want to help them. I am convinced that this law almost cost my wife her life and very possibly could have cost the lives of my handicapped daughters.

As of January 2011, my wife Carol, who suffers from bi-polar disorder, and I are divorced and she is living in secrecy and seclusion under the care of her family in New York State. Neither she nor her family will tell us where she is living. We have no way of getting in touch with her and only know that she is living in an apartment.

Our oldest child is Charlie, who was born in 1970. He is married and has two stepchildren. My daughter, Kathi Runyon, born in 1972, is married and has two children.

Our third child, John, was born in 1973. He lives in a group home in London, Ohio. John is severely to profoundly retarded and he has occasional seizures. He had a seizure last year, but prior to that hadn’t had any for about ten years. He is settled and lives in a homelike atmosphere.

My daughter, Brandi, is thirty-three years old and she lives at home with me. I am responsible for her except for six hours a day when she is at the Ray Graham workshop for disabled people in Lisle, Illinois. Brandi is severely retarded and she has mild cerebral palsy. She has assistance in preparing for the day from Tammy Larkin, a home health aide who has assisted us for many years, but I provide personal care, meals, transportation and all other aspects of her care. She cannot be left alone and functions at about a three-year-old level. I am her sole guardian since her mother was determined to be unfit to serve as guardian.

Daughter, Rebecca, age twenty-two, is living in the Alden Village Nursing Home in Bloomingdale, Illinois. She is profoundly retarded and has mild cerebral palsy. She has a severe seizure disorder and sees a neurologist every six months. Rebecca has a tracheotomy and has had it for about two and a half years. She has breathing problems and frequently contracts pneumonia. Rebecca has a feeding tube and is on a liquid diet. She is in a wheelchair or in bed except for the time each day when I go to visit her and try to get her to take a few steps.

All three of my disabled children probably have some gene in common, but we have had genetic testing done and cannot determine what the link might be.

It has been an uphill and sometimes frustrating battle to get the help my family needed. I have experienced and dealt with the Social Security system, the legal system, the mental health system and, at times, the law enforcement system.

My divorce attorney assured me I did everything I could to get help for Carol and more than anyone else would have. I believe I did the best I could. I was advised to divorce her five years sooner than I actually did. If I had recognized and been given the facts of her illness, I could have gotten her cared for sooner without interference from her family. Looking back, that would have been the smart thing to do.

Persistence finally paid off and I am free from responsibility for Carol. I feel a great sense of relief even though I would take care of her today if I could. All my life I’ve tried to be like my father, to save and provide for my family, even after I die. I think I’ve done a pretty good job at that so far for all seven family members. I have no regrets.

Foreword

I did not divorce Carol Belanger. I divorced mental illness and the Bixby family. I would have taken care of Carol for the rest of her life. Divorce was the only way I had to mitigate my risk and assure my handicapped kids’ futures.

My lawyer says it is a story that only I could tell. I chose to share the opportunity to tell the story with two of the people who were present for much of the chaos—my son, Charlie, and my daughter, Kathi. The story involves many scenarios: mental illness, Social Security Disability, Supplemental Security Income, dealing with doctors, lawyers, social agencies and law enforcement agencies. The story is both amazing and ridiculous. Many people have encouraged me to document this haphazard journey so it might serve as a guide for others who are experiencing the same hellish path.

1  

Ron

Carol and Ron

It’s hard to pinpoint the beginning of someone’s descent into the bottomless pit of mental illness. Carol and I were a young couple with more than our share of heartache to cope with. I was busy just keeping things going and so didn’t notice what probably should have been apparent.

Some people are quick to judge when friends and family members don’t get help for a person who is troubled. I guess I would say I’m exactly the opposite. Once I understood the urgency of the problem, I went overboard to get my wife help and care, to the extent that I’ve enlisted the aid of doctors, lawyers, courts, or whatever I could think of to try to help her.

I met my wife, Carol Bixby, when she was seventeen years old. I was twenty-one years old and had just gotten out of the Navy. I was a student at Utica College in New York State. At that time, the school was part of Syracuse University, so my degree is from Syracuse. I met her mother first. Eileen Bixby was a cashier in the cafeteria at the college. Carol, her daughter, worked there also. As a veteran funded by the government, I had a job for $1.00 an hour working in the cafeteria and getting all my meals included. That’s where Carol and I met. I lived in the dorm for a while and later had an off-campus apartment with two other guys.

She and I had a lot of friends in common and we used to go out partying with the group on a regular basis. The relationship developed for more than a year, from 1966 when I started college, until January 1968, when we got married. At first, we thought we had to get married due to an unplanned pregnancy. We were married in a Catholic church in Utica, New York. Carol told me she was pregnant, then later, after she was hospitalized for a few days, said she had a miscarriage. At our wedding, the officiating priest told us he didn’t expect our marriage to last for a year. Maybe he knew something I didn’t.

Our wedding was in January of 1968 and on May 15th of 1969, we had a stillborn child. The anniversary of the stillbirth has been consistently a bad time of year for Carol, bringing on a period of depression. 1969 was also the year I graduated from college. That same year we moved to Rochester, New York, my home town.

I grew up in Rochester, and had an excellent family—great parents, six brothers and a sister. I thought everybody was like us and didn’t realize there could be such dysfunction in other families. I was young and very naïve.

Carol’s father, Charles Bixby, ran a bar in Fulton, New York, not far from where we lived in our first apartment in Utica. We would sometimes go up and visit him at the bar. He was a big, rough-and tumble guy. Charles was an alcoholic who was very happy-go-lucky to everybody but his family. Not a nice man at all. He used to beat up on his kids and his wife when he was in a bad mood. Once when we were up visiting him, he became so threatening that we left the bar and took Carol’s mother and brothers and sister back to our apartment late at night. They stayed for a couple of days until he calmed down and we felt he wasn’t a threat.

Our relationship as a couple was good at first. We lived in a modest apartment and, just like everybody else we knew, we didn’t have much money. I worked in a bank—Security Trust Company. We visited friends and went to functions and activities