This is an ongoing piece that I am writing for my children, friends, loved ones…
So many of us go through life defined as mother, wife, (job title), etc., We are so much more than that! Our children deserve to know the real “us”. Our hopes and dreams, disappointments, successes, but most of all who we really are, in our own words.
I do not know the name of the photographer who took this photo. It is haunting in its stark reality of life at Northampton State Hospital.
“We Gotta Get Out of This Place” 1967
“Watch my daddy in bed a-dyin’
Watched his hair been turnin’ gray,
He’s been workin’ and slavin’ his life away.”
We gotta get out of this place, If it’s the last thing we ever do. We gotta get out of this place
Girl, there’s a better life for me and you.”
Eric Burdon & The Animals
This song became my battle cry as a 15 year old who had just learned that my beloved father was dying of early onset Alzheimer’s Disease in 1967. Already feeling the call of a non conformist lifestyle, all my feelings were exacerbated with the reality of life and the Vietnam War. There is a German term for this, “Weltschmerz”. What I had believed to be true about life (and my life) up until that point was on shaky ground. The events in my personal life solidified my need to withdraw from the mainstream. In 1968, I embarked on a trek across the U.S. (I was a run-way). It was an experience that encompassed both the highs & lows of being free and the pitfalls of being on my own on the road in 1968. The music of that time offered a cathartic release to unimaginable emotional trauma. As simplistic as the lyrics to this song are, its meaning instilled in me a rejection of the notion that working my life away with little time and but a vague understanding of the true meaning of that life was a fate that I couldn’t escape. That knowledge and my experiences on the road have helped to shape my world view.
I first heard the term “Alzheimer’s Disease” in 1967 when I was fifteen years old. My father at age 51 had been diagnosed with early onset Alzheimer’s Disease. Not much was known about this disease, at the time, the only place I could find information about it was in a Merck Manual. To say the prognosis was grim is an understatement. He would become more and more forgetful eventually unable to find his way around his own home or to recognize those who loved him. He would become argumentative, depressed, unable to do simple tasks. He would stop being able to speak, eat, and eventually his damaged brain would no longer tell his body to do what was necessary to stay alive. My father died on November 24, 1970 in Northampton State Hospital, also known as Northampton Lunatic Hospital and Northampton Insane Asylum, where he had been for a year prior to his death. He died of pneumonia and malnutrition, weighing 78 pounds. It had been three years since we received that horrible diagnosis. My mother had kept him at home for two years until it became impossible for her to care for him. She visited him at that hell-hole every day for a year. My father’s brothers tried to get him into Leeds Veterans Hospital at the time. However, my father, who was wounded in WWII and received the Purple Heart, who still had pieces of shrapnel in his skull, arm and leg, was not accepted into the veteran’s hospital, the VA, in its infinite wisdom said his condition “was not service connected”.
Northampton State Hospital was a snake pit of a place where the mentally ill were sent to be warehoused until they died. When it first opened in 1858 the philosophy was to cure the insane in the “Moralist” tradition a branch of Heroic Medicine which focused on placing the mentally ill in beautiful surroundings in order to “stabilize the mind”. In its early years the hospital adhered to strict guidelines of moral treatment and a philosophy that able bodied patients would benefit from working in the hospital’s farm and greenhouse. Unfortunately, optimism for curing of mental illness began to decline at the turn of the century as hospitals became overcrowded. The moral treatment the hospital had once been dedicated to was reduced to basic custodial care by 1885 as the number of patients in Old Main grew to 476. In 1902 and 1903 an addition of two infirmary wings and later federal funding from the Great Depression funded the Memorial Complex which allowed for another 1000 patients. By 1955 the hospital population reached its peak of 2657 patients. In 1961 more patients were discharged than admitted due to the advent of psychotropic drugs.
In 1972, two years after my father died there, Attorney Steven Schwartz visited Northampton State Hospital after agreeing to represent a fellow attorney’s Belchertown State School and NSH clients. His narrative, which can be found online at http://northamptonstatehospital.com/narratives/ described the “deep sense of pain” and “pervasive and profound suffering” that he felt and saw on that first visit. That “deep sense of pain” and “pervasive and profound suffering” is what the patients and their families felt every day at the hospital. Pain is what I still feel when I remember visiting my father there at the age of sixteen. Attorney Schwartz vowed not to leave Northampton State Hospital until he could help close it forever for which I am eternally grateful. Eventually Steven Schwartz would serve as the lead attorney in the law suit which closed NSH. On January 6, 1978, eight years after my father died at NSA, the United States District Court approved the Brewster Consent Decree, also known as the Northampton Decree, which made clear a patient’s constitutional right to treatment in the least restrictive environment possible. Under its terms, the State Hospital was to reduce, over three years, its number of patients to fifty. Northampton State Hospital began a slow, fourteen-year process of deinstitutionalization, releasing many patients to families or placing them in group homes and nursing facilities. Finally, in 1986 Old Main was vacated and the hospital closed completely in 1993 after admitting 64,500 patients over the course of 135 years.
Alzheimer’s Disease appears to run in my family. My sister Judy also died of Alzheimer’s Disease in 2015 at the age of 72.
To be continued…