I watched The Vineyard on Amazon Prime, a series whose plot centers on the main character's husband's advancing dementia.
I won't pretend this portrayal teaches us anything about care work in the 1860s, since nothing in the series seems particularly realistic. My favorite part of the series is when they decide to hide the husband with dementia in a convent. A convent is a logical place to house someone with dementia, since convents were the original hospitals and nursing homes. Why this would be a secret hiding spot is beyond me.
One of the things they hint at and choose not to address is how they manage to keep the husband home. They hint at his paranoia and aggression. He wanders off and is almost run over by a carriage in one episode. Once they’ve had enough scenes to establish that he has dementia, he becomes a docile lamb of a patient, easily transported and hidden away as necessary.
Plenty of us heard stories about the mad woman kept locked in the attic as children. I remember being informed that the old maid who lived alone in a shabby house and rarely came out was a witch. Apparently Berrie Holtzhausen missed out on this standard childhood lore, since Holzhausen was shocked when he enountered the neighborhood witch.
Ngombe wasn’t bewitched: Her behavior was changing in ways that match typical symptoms of early onset dementia. But she lived in a cultural landscape shaped by a deeply ingrained belief system that blames everything from heart attacks to poor harvests on the supernatural evildoings of witches and wizards. A witchdoctor had told Ngombe’s brother that his life was tethered to hers — if she died, he would die three days later. Therefore, he didn’t want to let her out of his sight. And so time passed — five years, 10 years, 20 years, and she remained alone in the hut.
Granted, this story and the treatment of Ngombe is quite more dramatic than that of my own childhood neighborhood witch.
Holzhausen grew up in Namibia, spent some time in the army, joined the ministry, and now drives around freeing and defending Black Namibians accused of being bewitched or being witches. The story is a real uncomfortable ride of red flags for little boys who want to save the day.
“You’ll never find people with dementia if you ask for dementia,” Holtzhausen says, so he began looking for witches instead. If he stays in a hotel, he asks the staff if they know any witches. If he goes to a grocery store, he asks the clerks if they know witches. He put a picture of Ndjinaa Ngombe being released from her chains on his truck; when people approach him in parking lots asking about the picture, it’s the perfect time to ask them, “Do you know any witches?”
As someone who also shows up in different towns looking to meet local caregivers and caregiver support programs, I can attest that asking directly for what we’re looking for isn’t usually the most effective way to go about things.
As much as diseases have biological markers, which we use to identify and diagnose them when symptoms overlap so much from one condition to another, there is also a social context to medicine.
Shortly thereafter, he met a specialist from one of the largest towns in north-central Namibia who said he’d been working with dementia patients for 20 years — but claimed he had never met a Black person with dementia.
“What?” Holtzhausen said to himself. “How is this possible? I’ve just freed Ndjinaa with my own hands, but according to him there’s no one in Black Africa living with dementia.” Holtzhausen understood then the extent to which dementia was perceived as a white person’s condition — one that was also completely overlooked in the Black community.
…
Alzheimer’s Disease International (ADI), a global federation of Alzheimer’s and dementia associations that works in collaboration with the World Health Organization, found in a study of five Sub-Saharan countries that, “No equivalent term for dementia was identified in any local languages.”
Accordingly, there are no medical facilities in rural areas of Namibia (which cover most of the country) that have staff trained in diagnosing dementia, or even in the recognition of it. There are no MRIs or other machines to conduct brain scans anywhere except in the capital city, Windhoek, hundreds of miles away from the northern rural areas. The vast majority of rural Namibians can’t afford private practitioners, and there are no wards for dementia patients in public hospitals.
I know nothing beyond what’s contained in the article, but it suggests that there is a word for dementia. It’s the catchall term of ‘bewitched.’
Given the prevalence of sundowners syndrom, it seems like a reasonable assumption. As the sun sets, there is a shift in behavior. “Symptoms include insomnia, anxiety, pacing, hallucinations, paranoia and confusion (Cleveland Clinic).”
Is the problem the label? Is it worse to be bewitched rather than demented or senile or crazy? Is the problem that there is no effective treatment for this condition, no matter what we call it? Is the problem that people with dementia require many hours of care and few people have the financial security to provide those hours of care? Do the Black people of Namibia need a white man from another culture to come tell them how to take care of their elderly relatives? Or do they need the funding and connections that man has? Are wealthy Black Namibian witches kept locked up? Are they labeled witches when they display the same behaviors? Is Namibia the only place where poor people with dementia recieve inadequate care that is often neglectful and cruel?
In Idiocy: A Cultural History, Patrick McDonagh explains that being an idiot used to be fancy. In England in the 1540s “There would be no point in identifying a peasant as an idiot, as peasants and labourers were already assumed to be incapable of managing the responsibilities that rested upon the shoulders of members of the landed classes (McDonagh, 2018, 85).”
It took three hundred years for idiocy to filter down to the poor, to be something that made one worth feeding and sheltering without demanding they work to earn it: “[H]aving an ‘idiot’ family member was at this time [1855] a legitimate cause by which poor families could justify their poverty and receive special Poor Law benefits (McDonagh, 2018, 98).”
Instead of using laws against assault, harassment, and imprisonment to fight for people with dementia who have been abused, Holtzhausen is using an apartheid-era law against Indigenous practices.
Why do single parents leave their young kids home alone? Because there isn’t a better option.
Why do single parents lock children in the car? Because they don’t have a better option.
Why did families lock mad women in the attic? Because there was no effective treatment and it was socially unacceptable (and sometimes illegal) to let them be seen in public.
Why are there people today living in tent encampments in cities around North America and Europe? Because they have no better options.
Why would a family hold someone prisoner in a hut? Because there is no treatment and they can’t afford to have someone there to provide around the clock care.
Desperate people do desperate things.
In the US, Medicare doesn’t cover the cost of supervision and support for activities of daily living, meaning people with dementia are not entitled to any of the many hours of care they need unless they’re indigent and qualify for residential care under Medicaid.
People with dementia are bad recipients of help from charities and governments. They struggle to fill out enrollment forms. They don’t show up on time. They forget about deadlines. They don’t know where their important documents are. They don’t follow the rules of decorum. They keep forgetting there’s a pandemic and taking off their face masks. They can’t navigate the process of getting help on their own.
Back in the 1860s, Europeans and Americans had become entranced by the magic of scientific medicine. We traded midwives and barbers for licensed MDs. We stopped holding witchcraft trials and instead had them declared insane and institutionalized. Or we kept madwomen locked in the attic. Dementia became less shameful when antibiotics were discovered and syphilis was no longer the most common cause.
How is one diagnosed with dementia? There are several tests of memory, reasoning, language, movement, and other behaviors to see if they’re abnormal. Doctors use a blood test and MRI to see if there is some other underlying cause of the symptoms. Before the early 2000s, if there was no other explanation for symptoms, the patient was diagnosed with dementia. Now doctors can make an accurate diagnosis based on the combination of biomarkers and symptoms without needing to conduct an autopsy.
How is one determined to be under the spell of a witch? Well, we know they don’t use an MRI.
What does it mean to be locked up? We’ve closed the insitutions where people with dementia were kept naked, filthy, and in chains. Still, there is one scandal after another about residential facilities sedating and restraining people with dementia. Or worse. The pandemic meant people living in residential care facilities were locked in rooms without access to activities or visitors for months, yet still so many died in covid outbreaks.
Thinking back to Silvia Federici’s Caliban and the Witch, I wonder if the problem for us in Europe and North America is the lack of witches. We’re all struggling through the life cycle on our own, needing to buy what was once shared within the community.
“[T]he witch-hunt destroyed a whole world of female practices, collective relations, and systems of knowledge that had been the foundation of women’s power in pre-capitalist Europe, and the condition for their resistance in the struggle against feudalism (Federici, 2014, 103).”
The witch hunts of Europe coincided with enclosure, the loss of hereditory rights to occupy and use the land. We see echoes of this idea in newspaper articles arguing that the little old lady who’s family has rented the same home for 50 years should have the right to stay there for the remainder of her life, regardless of who actually holds the title to the property or whether she could afford to pay its market value. There are echoes in the way we allow people to build shacks in strips of unused land betweeen highways and forage for what they can without paying rent to the property owners or even asking their permission.
Capitalism relies on the concept of private property, which goes against the concept of communal responsibility. It requires hierarchies of power and the nuclear family, to draw lines around who is responsible for whom. Enclosure, the transition from community and the commons to our modern system of individuality and the nuclear family, was accompanied by the loss of generations of folk healing knowledge.
The practice of witchcraft became punishable by death as the scientific revolution blossomed. Before that, it was illegal to harm people, but not illegal to be a witch or to be bewitched.
What did the witch hunt look like in the 1500s?
“In England, the witches were usually old women on public assistance or women who survived by going from house to house begging for bits of food or a pot of wine or milk; if they were married, their husbands were lay laborers, but more often they were widows and lived alone. Their poverty stands out in the confessions. It was in times of need that the Devil appeared to them, to assure them that from now on they ‘should never want,’ although the money he would give them on such occasions would soon turn to ashes, a detail perhaps related to the experience of superinflation common at the time. As for the diabolical crimes of the witches, they appear to us as nothing more than the class struggle played out at the village level: the ‘evil eye,’ the curse of the beggar to whom an alm has been refused, the default on the payment of rent, the demand for public assistance (Federici, 2014, 171).”
Now the devil appears to old women in the form of multi-level marketing schemes (and the young in the form of crypto, meme stonks, and the 4-hour workweek). The police don’t do much in the way of investigating scams; they also don’t label the victims as witches. The kids still do, though.
“As we have seen, in England, poor women who begged for or stole milk or wine from the houses of their neighbors, or were on public assistance, were likely to be suspected of practicing evil arts. Alan Macfarlene and Keith Thomas have shown that in this period there was a marked deterioration in the condition of old women, following the loss of the commons and the reorganization of family life, which gave priority to child-raising at the expense of the care previously provided to the elderly. These elders were now forced to rely on their friends or neighbors for their survival, or joined the Poor Rolls (at the very time when the new Protestant ethic was beginning to finger alms-giving as a waste and an encouragement to sloth), and as the institutions that in the past had catered to the poor were breaking down (Federici, 2014, 200).”
The witch hunt was an attack on networks of kinship ties, on heredatory ties to communal land, and the idea that all lives have value.
Luckily for people living with dementia and/or experiencing poverty, things in the US are totally different than in Namibia today and in 1500s England, right? Ah, if only!
One of many parts of Sady Doyle’s Dead Blondes and Bad Mothers that was deeply uncomfortable to listen to was the story of Edwin Brown eating his sister Mercy’s heart because he believed her to be a vampire. This happened in Rhode Island. In 1892. That was the year we started reciting the pledge of allegiance, the Stanley Cup championship started, the police started using fingerprints, women were admitted to Yale, Vogue started publication, and the incident that led to Plessy v. Ferguson took place.
It wasn’t just a new world thing. Michael Cleary burnt his wife, Bridget, to death in 1895 because he believed she was a changeling. It ended up in court because while her family agreed that she had been a changeling, they had worked with Michael to drive it away. They believed their counter-magic had worked; Michael disagreed.
Okay, sure, 1895 was 127 years ago. The oldest woman, Jeanne Calment, only lived to 122 years.
What about today? Doyle doesn’t have good news.
“Since The Exorcist initiated the first boom, the demand for Catholic exorcisms has never died down. The Catholic Church is scrambling to put a qualified exorcist in every diocese, to meet increasing demand; in 2014, Father Francesco Bamonte of the International Association of Exorcists told The Independent that “the few exorcists that we have in the dioceses are often not able to handle the enormous number of requests for help.”
I always wondered about people’s enthusiasm for dementia awareness campaigns. Surely we all have a notion of what old age can entail. Now I understand: we’re making sure Americans know that the 10% of Americans over 60 who have dementia (JAMA Neurology via Futurity) aren’t suffering from demonic possession.
46% of Americans said they believe in ghosts (IPSOS via NYTimes)
29% of Americans said they believe in astrology (Pew Research)
21% of Americans said they believe in witches (Gallop, 2005)
Early onset dementia has been diagnosed in patients in their 30s (Mayo Clinic)
The median cost of residential care in the US was $49,000 in 2019; the median cost of nursing home care was $90,000 (PRB)
31% of unhoused people in the US are over the age of the 50 (HUD via NYTimes)
It’s also for the police, so they reduce the amount of force they use when encountering people who behave erratically and refuse to follow orders.
How many people living with dementia in the US have a roof over their heads because they’re living with a family member or because someone else is paying their bills? How many haven’t been taken out of the house in a long time, because it’s too hard and too risky?
People with dementia don’t survive for long if they aren’t getting at least some care. You can’t just lock them in a room or chain them to a post and walk away. You can’t just open the door and let them wander into the night and expect them to survive.
One thing in The Vineyard does ring true: being declared legally incompetent renders you powerless. And, if you haven’t gotten your paperwork in order, it means your legal next of kin gets to make all of your decisions for you. It means you might be cared for at home by servants, in a faith based care home, or an institution.
There’s one other truth in The Vineyard: none of us can escape the human condition, but life is far more brutal when you’re poor.
Speaking of evil witches, they have some tips on how self care actually works when you’re in the role of caregiver.
If you’re curious about how the devil appears to young people today, Adam Mastroianni has got your answer.
I read another Narratively story about a man who spent much of his life trying to support his mom as she struggled with addiction. My reaction to this was:
Wait, so New York City used to have a housing first policy where people who were unhoused could instantly get housing without any requirements that they stay sober, participate in a welfare-to-work program, or even fill out a ton of paper? And it had no waiting list? And you didn’t lose your housing if you worked intermittently or got sent to rehab? Why did this end? How do we bring this back?
Why is this police officer telling us about his assault of an alleged drug dealer? Does he imagine there is only a single source of drugs for his mom in all of NYC?
The author seems confusingly upset about the existence of free, reasonably safe housing that his mother liked enough to choose to remain in when she had other options. One option she didn’t have was to stay with him, his wife, and their children, because the author has clear boundaries. Today, because SROs have been shut down in cities across America, people like his mom who struggle with addiction and chronic illness have the choice between shelters, the subway, tent encampments, or the sidewalk.
We’re going to be discussing how anticipatory grief is experienced by family caregivers and how we cope on November 19th at 2pm EST / 7pm GMT. If you’re a member of our Facebook community, you can sign up here. If you want to join us and aren’t on Facebook, just hit reply and I’ll send you a direct link for the zoom call.