21 March 2023

T.B, family secrecy, involuntary lockup and treatments


Hilltop TB Sanatorium, Verona, 1907
myveronanj

The first modern sanatorium for treating tuberculosis was the Royal Sea Bathing Infirmary for Scrofula, founded by a Quaker physician in Margate in 1791. Built for 36 patients and later expanded, the building was designed so patients could sleep on open but protected balconies and spend the day in gentle exer­cise or resting on the beach.

English Dr George Bodington wrote a scathing attack on other TB treat­ments in 1840, including imprisoning patients in sealed rooms at home. Unknown at the time, this treatment infected their caregivers and family members. Dr Bod­ington rented a house and op­ened a san­at­or­ium where patients could en­joy the fresh dry air, exercise and a good diet. The med­ical estab­lishment respond­ed harshly, with many noted doctors con­demn­ing his approach; TB referrals to his san­at­orium waned. So he dev­oted the remainder of his profess­ional life to the care of the mentally ill.

Jewish Consumptives’ Relief Society, Denver
c1930 
Photo credit: Beck Archives, University of Denver

A German Dr Hermann Brehmer opened the first sanatorium in the Bavarian Alps in 1854. It was a live-in hospital made of cabins where patients could get fresh air, good food, presc­ribed rest and exercise. Brehmer had weatherproof wooden bench­es fixed into the ground at regular in­tervals along the forest paths. This life offered a de­gree of remission to some patients, by help­ing to streng­then their own immune systems. Sanatoria also gave the bene­fit of separ­ating the infected from others, sometimes for years. 

The first U.S sanatorium opened in 1885 in Saranac Lake New York by an American doctor who had planned to live in the Ad­ir­ondack Mountains. Dr Trudeau had read about the Brehmer approach and sought to replicate it. He also read of Dr Robert Koch’s disc­overy of the TB bacterium and set up his own ex­periments to test germ theory on animals, to quant­ify the sanatorium treatment. 

See how the architecture of a building could be purpose-designed for a TB sanatorium. External space was allocated for patients at the Jewish Consumptives’ Relief Society Denver who participated in heliotherapy/sun exposure as a treatment for TB. 

The many sanatoria accommodated a small fraction of the millions of TB victims. Wanting to avoid deaths, sanatoria often did not accept people with advanced disease. And because of the cost of sanatorium care, poor patients were left to die at home with their families. The death rate in sanatoria or at home were the same i.e half of pat­ients died. So the secrecy within these families was intense. 

Once antibiotics were discovered in the 1940s, they provided a real cure for TB, so sanatoria declined and closed. But even though the sanatoria had not cured TB, they did provide a long-term bene­fit to families and society.

In c1930 my paternal grandmother disappeared from her home, leaving her husband and 6 children alone. The oldest two children were mat­ure enough to stay at home, but the four youngest boys were separated and each lived with an aunt or uncle. Apparently my grand­mother had TB and was sent to a sanatorium in a country reg­ion an hour outside Melbourne, for an unknown number of years.

The boys were told that family secrecy was essential, that they were never to mention TB at their primary school or Sunday School. But they did know that TB was so infectious that they could NEVER visit the sanatorium, open a letter their mother wrote or handle the embroidered or knitted gifts that their mother made and posted to them. My father didn’t even remember how long his mother had been absent.

Willard State Hospital, NY

See an analysis of being locked away, for mental problems and not for TB. Nonetheless the isolation seemed the same. Willard Asylum in New York's Finger Lakes admitted its first pat­ients in 1869. Many of the early res­id­ents arrived after years of incarceration and mistreatment in dismal alms houses. Before long, Willard grew into a sizeable vil­lage, relying heavily on unpaid patients labouring in the farm, bakery, kitchens and indust­rial factories. Factory-sized brick buildings housed patients, while the more opulent residences were designated for staff.

By the early C20th, the patient numbers in Willard State Hospital rose steadily, with over-crowded wards and deteriorating condit­ions. The hospital's original purpose as a healthy rural retreat was lost in the grim realities of institutional life.

Willard's population reached an all-time high of 4,076 in 1955, and conditions within the institutions were harsh. By then state hospitals began to use newly developed anti-­psychotic drugs to control patients crammed into tight living quarters. In the early 1970s, new laws promoted patients' rights and resulted in a shift away from long-term institutionalisation.

50,000+ patients had been admitted to Willard during its 126-year history, and nearly half of those died there. When Willard closed in 1995, workers discovered hundreds of suitcases in an abandoned building’s attic. Many of them seemed untouched since their owners packed them decades earlier, before entering the institut­ion. 

Willard closed in 1995, 
Hundreds of suitcases remained from the patients who never returned home.
SMH

We learn who these invisible people were, prior to being committed behind Willard’s hospital walls, largely from the clothing and per­sonal objects left behind. The objects speak about fam­il­ies, friends, careers, sports, study­ing, writing and travel­l­ing, but also about loss and is­ol­at­ion. See their lives coming apart due to unemploy­ment, loved ones dying, loneliness, poverty or some other crisis.

The collection raised difficult questions. Why were these people committed into this in­stitution, and why did so many stay for so long? How were they treated? What was it like to spend years in a closed institution, shut away from a society that wanted to distance itself from these people? Why did most of the patients live out their days at Will­ard? What happened to their families?

The Willard cemetery opened in 1870, a year after the instit­ut­ion opened. Most of the 5,776 graves bore only numb­er­ed, cast-iron markers. These were the relics of the thousands of pat­ients who spent much of their adult lives confined in a state asylum.




30 comments:

Cousin said...

Helen Just like your dad, my dad was miserable for ages. He was sent to his uncle who already had a lot of children of his own and couldn't cope very well with a lonely, crying nephew.

DUTA said...

Your post reminds me of another disease - leprosy- which brought isolation, secrecy, stigma to the sick people.
In summere 2015 I visited the leper colony of Spinalonga on the island of Crete (got closed in the early fifties ; I wrote a post about the visit).) - a place with no way of return. Very interesting and thought provoking place!

Rachel Phillips said...

My mother lost her mother in 1930 to TB. Mum was 9 years old. She was immediately sent off to boarding school. When she came home a few months later her father had a new woman, all her late mother's belongings had disappeared, and my mother's life changed forever. It scarred her for life. I don't believe she ever got over it.

Andrew said...

Your own family's experience ads a lot of a colour to this report. People lived in very different times, but it was not that long ago in human history. I wonder if TB was as infectious as it was thought to be at the time.

Hels said...

DUTA

Thank you.... I wish I had seen the old leper colony on Crete when we were there in the 1970s.

I don't suppose leprosy was as contagious as other diseases, so the reason lepers were moved to isolated islands etc was because it created permanent disabilities and ugliness. And because the families couldn't cope. Thankfully in WW2 an effective treatment was found for leprosy, so that isolation was no longer necessary as the patient quickly became non-contagious.

Hels said...

Rachel

TB was brutal, nod. I know that many children lost a parent in the first half of the 20th century, such that the children retained the pain for the rest of their lives. But worse still, your grandfather and step grandmother offered zero comfort and no sensitivity to your grieving mother.

Hels said...

Andrew

TB was a problem when our parents' generation had their memories intact... a very short time ago in our history. But I had a long think about the question "was TB as infectious as it was thought to be at the time?"

The only way the bacteria could get from one person's lungs to another person's lungs was by coughing or singing close enough for the second person to breathe them in. So if children slept together in one bed (as so many did), it could spread easily; if they held hands, they could not spread it.

Hels said...

cousin
I imagine that if anyone knew about the TB, that child would never be allowed into school or friends' houses, and the father would have lost his job. But the secrecy meant the children didn't know if their mother was even alive.

Dr Joe said...

In 1945, Dr Nancy Atkinson, a bacteriologist at Adelaide's Institute of Medical and Veterinary Science, produced the first Australian made vaccine against TB. This vaccine was later produced in quantity by the Commonwealth Serum Labs. The Aus TB Campaign ran from 1948-76, providing citizens with free diagnostic chest X-rays, medical care and an allowance while being treated. Where X-rays detected an abnormality, this would lead to further testing in hospital and subsequent treatment.

No wonder the age-standardised death rate from TB in Australia dropped dramatically during the 20th century, from 108.5 per 100,000 population in 1907 to 0.3 per 100,000 population in 2000.

History of TB Control in Australia

Rachel Phillips said...

Yes Hels that is exactly right. She never reconciled with him and had a strained relationship with her father for the rest of her life. She hated her step-mother for ever.

Hels said...

Dr Joe

thank you for an excellent reference. If TB was the major cause of death in Australia at the start of the C20th, why did it take so long to establish a campaign against the spread of TB? And why did it take till 1948 before the new Tuberculosis Act permitted the Commonwealth to lead national efforts to control TB? Thank goodness for the introduction of antibiotics in 1952 which significantly reduced TB rates.

jabblog said...

Antibiotics must have seemed like miracle drugs. Now, diseases are becoming resistant to them and the race is on to discover "something" to replace them.
Fascinating insight into the history of sanatoria.

Hels said...

Rachel

I keep thinking of all the ways young children could have lost a parent, when everyone thought it was one of those sad, terrible things in life but that life has to go on - pneumonia, tuberculosis, diphtheria, pogroms, war injuries, coal mine collapses, ship drownings etc.

If the mother was left alive, she had to look after her children as warmly as possible. If the father was left alive, he simply had to find a new woman to look after the children, either a new wife or a paid baby sitter.

If I was 9 when my beloved mother passed, I could not have gone on.

Hels said...

jabblog

thankfully the sanatoria provided all sorts of services (fresh dry air, exercise, good diet and sunshine), but sadly there was no antibiotics back then. Yes, some diseases are becoming resistant to modern antibiotics and, if lose their effectiveness, then we lose the ability to treat infections and to control public health threats.

Researchers HAVE to move faster than ever before.

Viagens pelo Rio de Janeiro e Brasil. said...

Boa tarde de quarta-feira e boa continuação de semana.
Pesquisei o nome das flores, Tillandsia Geminiflora.
Luiz Gomes.

Hels said...

Luiz

thanks for searching the name. I would not have found Tillandsia Geminiflora by myself.

mem said...

Goodness this brings back some interesting memories,. In the early1980s I worked in a large base hospital here in Victoria which had the most wonderful modernist TB Chalet . Our department was housed in this airy very pleasant building . Later it was torn down . It should really have been preserved as a relic of the TB era . I also worked in Beechworth just outside the gates of Mayday Hills . It was a truly Dickensian building where people with various disabilities disappeared into . My cousin discovered that unbeknownst to the family she had a brother in law with Downs syndrome who had been placed there after birth and had been wiped off the family history . His parents had died by the time his siblings discovered him and to their credit he was reincorporated into the family by them . Honestly in so many ways we live in a better world .

Hels said...

mem

you have had some amazing work experiences that would have starkly remained in your memory. I had to rely on excellent written and oral records, but that is never as meaningful as residents or staff understood.

I understand why institutions kept their records hidden - to protect the family and the "victim's" privacy. But it caused so much pain and sense of loss, there should have been a time when the files were properly published. There is a British tv programme called Long Lost Family where families struggle for years, just to get adoption records open. Let alone TB records etc.

mem said...

Hello , There actually was a program which was run out of Kew asylum's and maybe Kew Cottages where social workers trued to find relatives of the people who had been living in these institutions . Some were successful some not . I remember reading about it in The Age good weekend . I wonder if a book has been written on it . I remember too seeing something about an exhibition charting the history of some of the inmates at Sunbury . Some of the more memorable were women who seem to have been having a rugged menopause or post Partum depression. I also remember reading something fascination about the man who started using lithium to treat Bipolar disorder at Mont Park . He was the first person in the world to do it and was motivated by his love for his dad who I think was a Pharmacist in Horsham who had Bipolar disorder .I think there was a really interesting episode of All in The Mind on radio national which told his story .

Hels said...

mem

You comments are important. There were two reasons people locked away (usually involuntarily) in care facilities were badly treated:
1. the necessary drugs and surgeries had not yet been invented and
2. women, the elderly, migrants and the psychiatrically disturbed people were not treated with any respect whatsoever.
Thankfully we are much better off now with effective drugs and surgeries. But we still have to ask are all people in care treated with the same dignity, regardless of their social status? My experience in residential care for teenagers is, alas, not necessarily :(

Pipistrello said...

This is fascinating. I wonder how long a TB patient typically "resided" in one of these institutions before they perished? I dare say there were no miraculous recoveries before the invention of antibiotics, just a prolonged demise. I discovered last year, doing some genealogical rummaging, my G-G-Father died in 1917 aged 33 of TB. He left 3 kids under 8 and the family was only newly emigrated to Australia. As to whether he was incarcerated, I don't yet know. I suspect he was exempted from war service as he would most likely have already had it at the outbreak of war, unless he was discharged upon contracting it. And what happened next to the family is a bit of a mystery but there wouldn't have been any assistance from English relatives.

Britta said...

Dear Helen, it is really shocking to read how these poor patients were treated - I feel so deeply for the poor mother of your father, for her husband and their children.
I have just read Thomas Mann's Zauberberg again - The Magic Mountain, you will know it. There TB is shown in a way that made the sickness appear less awful. But your report really shocked me.

My name is Erika. said...

I grew up not too far from a TB Sanitorium in Massachusetts. I knew about these, but I didn't know about the personal/family reactions that happened when people went to these places. It's so sad they needed to keep it a secret, especially since it is a disease and they didn't know all that much about how it spread at that time.

Student, for Helen said...

Pipistrello, Many people didn't want to be taken to a distant sanatorium, cut off from family and friends, so they stayed secreted in their squishy, unhealthy homes. And recovered or died at home. But if they could afford an isolated rural retreat with good food and clean air, I suspect more patients recovered and went home, the minority dying in the sanatorium.

For example in Italy, until WW1, some 85,000 citizens died every year from TB when voluntary societies did all the hard work. But when the TB epidemic flared up once again in war time, it became clear that more structured _state_ intervention was urgently needed to tackle this terrible public health problem. 1917 was a terrible year, as your poor family discovered.

Student, for Helen said...

Britta Yes indeed. The Magic Mountain was very appropo since before WW1, since Mann was able to visit his tubercular wife in her sanatorium in Switzerland for months. Once he got to know the patients and staff there, Mann thought he understood disease and death. That was until the WW1 exploded on the world.

Student, for Helen said...

Erika The secrecy was the unfortunate families' response to medical ignorance, poverty and fear of being cut off from work, family, friends and public transport. I understand why families behaved as they did back then, but to this day I still don't understand why the various governments didn't make mask-wearing mandatory during WW1 and after. It may well have also reduced the tragedy of the Spanish Flu.

diane b said...

You write such interesting posts. Well done. My mother used to nurse mental patients in London and Sydney. She also nursed TB patients in Sydney. She did this between 1930 and 1967.

hels said...

Diane,

I know the mentally disturbed and the TB patients required endless work from the staff. All the credit to the nurses... I couldn't have done it.

Did your mother ever talk to you about the effectiveness of the care and the feelings of their patients' families?

Hasnain said...

Very Nice

Hels said...

Hasnain

Thank you for reading the post; I would have thought traumatic was a better word.