FREDERICKSBURG, Virginia --Constance Guthrie hasn't died yet, but her daughter has started planning her funeral.
It will be, says Jessica Guthrie, at a black-owned funeral home, with the songs of her ancestors. She envisions it as a celebration of her mother's life, not a tragic recitation of her long decline.
as it should be Constance lived 74 years, many of them good, as a black woman, mother, educator and businesswoman.
But he will die of Alzheimer's disease, a scourge of African Americans that threatens to get much worse in the coming decades.
Blacks are more likely to develop Alzheimer's than whites in the United States. They are less likely to receive a correct diagnosis, and their families often have difficulty obtaining treatment from a medical system that is biased against them.
According to the Centers for Disease Control and Prevention, about 14% of black people in the United States over the age of 65 have Alzheimer's, compared to 10% of white people. The disparity is likely to be even greater because many black people do not receive a correct diagnosis.
And by 2060, cases are expected to quadruple among African Americans.
Although some risk factors may differ by race, the large disparities between racial groups cannot be explained by genetics alone.
Problems start much earlier in life. Health conditions such as heart disease and diabetes are known risk factors. Both are more common among black populations due to where they live in relation to polluting industries, poor healthfoodoptions and other factors. Depression, high blood pressure, obesity and chronic stress can also increase the chance of developing Alzheimer's disease. Also poverty.
In general, blacks do not receive the same quality ofhealth carethroughout their lives as white people.
Therefore, they do not receive high-quality treatment, or no treatment at all, for all conditions that are risk factors. So, in the end, they are less likely to get medication to ease the symptoms of Alzheimer's and dementia-related disorders.
And then there is the insidious impact of a lifetime of experiencing racism.
Racism is a trauma that can lead to increased stress, which in turn can cause health problems like inflammation, which is a risk factor for cognitive decline, said Dr. Carl V. Hill, Alzheimer's Association Director of Diversity, Equity and Inclusion.
“But because of this structural racism that creates poor access to health care, medication and housing, those who experience racism and discrimination are not given an avenue to reduce their risk,” Hill said.
It is, he said, "a double whammy".
For Jessica, this meant that the last few years of her mother's life were not ones of peace, but of anguish and frustration, as she deals with doctors who don't believe her when she says her mother is suffering. In the slow, arduous walk of her mother's final years, she has few health partners.
“It's been pervasive to a lot of doctors, emergency rooms, and hospital doctors,” said Jessica. "Not being heard, not believing, not getting the full treatment."
“Being a caregiver for someone living with Alzheimer's is seeing your loved one die every day. I have been mourning my mother for seven years.”
EDITOR'S NOTE: This story is part of an AP series examining the health disparities experienced by African Americans over their lifetimes.
The salon was called “Hair by Connie” and for 18 years it was the place to go in Alexandria, Virginia if you were a black woman who wanted to look your best. Reigning over the shop was its owner, Constance Guthrie.
He traveled the world, taking part in hairdressing shows. She opened her salon to fashion shows like the "Tall, Full and Sassy" event advertised on an old flyer she now keeps in a keepsake box. She donned dazzling, colorful, and outlandish clothing to match her larger-than-life persona.
In the 1990s, he made the difficult decision to move and close his beloved salon. She bought a home in Fredericksburg so her daughter could attend the best schools, and later became a paraprofessional in the local school district, allowing her a schedule where she never missed speech contests or choir recitals.
He has always been by Jessica's side, who is his only child. They used to stay up late at night working on school projects together. Despite limited resources, Jessica grew up surrounded by encouragement and love.
“My mom dropped everything to make sure I had the best support, the best opportunities,” recalled Jessica Guthrie. "We were like two peas in a pod."
Her mother's hard work paid off. Jessica became a teacher and then moved to Dallas to build her own life and pursue her dreams, where she was a successful program director for an educational service.
Then, seven years ago, Constance began her descent into madness.
He started forgetting simple things like where his keys were. He got lost walking home from work on a familiar route he'd taken almost daily for 18 years. He was in a car accident.
The frequency of worrying incidents began to increase, worrying Jessica, who was still hundreds of miles away in Texas.
They tried using sticky notes to remind Constance of daily chores. Some of the colorful notes still line the walls of the family home.
For a woman who had grown used to being so independent, it was hard for her to accept that she needed help.
“He spent so much time trying to hide it,” Jessica said. "Like, 'Oh, I'm fine, I'm fine. I just forgot. But you could tell a lot of her anxiety and stress was because she was trying to cover it up from other people."
He began to wander around the neighborhood. Jessica and her loved ones tried to lock the door to prevent her from wandering off.
A neurologist confirmed that he suffered from early cognitive decline and that it was likely Alzheimer's.
She was just 66 years old when she was diagnosed.
Soon after, Jessica made the difficult decision to pack her bags and leave Dallas behind to care for her mother full time. She recently returned to working remotely after taking an extended leave of absence to care for her mother.
Constance never had diabetes or high blood pressure, which are common risk factors. She was quite active and healthy and frequently walked around the neighborhood. But in 2015, Constance suffered a transient ischemic attack, or "mini-stroke", which is a brief interruption in the blood supply to part of the brain.
Jessica believes the mini-stroke may have been caused in part by the severe stress her mother endured at her job, where she worked for 18 years as a special education paraprofessional.
She also questions the role genetics played in her mother's diagnosis. Her mother's aunts are all living with the disease. Her mother's brother, who was a doctor, began to experience cognitive decline. ___
Lost in her own mind, Constance can no longer bear witness to the hardships she endured as the mother of a black businesswoman running her own business.
But her daughter, Jessica, can attest to the struggles she's had as a Black caregiver trying to make sure her mom gets the proper care.
In 2018, her mother began repeatedly pointing to her stomach, trying to tell her daughter that she was in pain. Jessica took her to her general practitioner, who is white, and he dismissed the concerns.
“My mom couldn't articulate that there was significant pain at the time and the doctor basically said, 'Oh, well, you know, sometimes they just come in and do a show and it looks like she's fine.' said Jessica. "They asked, 'Are you sure he's in that much pain?'"
They sent her home without further diagnostic testing. But the pain persisted.
Jessica took her mother to the emergency room the next day and an African-American doctor ordered the necessary images. I needed emergency surgery to correct a painful, bulging hernia.
Then there was the time he took his mother to the emergency room for severe pain in her legs. She had arthritis in her knee, but Jessica suspected something more serious.
The doctor told him he probably just needed rehab for his bad knee. Jessica begged for more tests and it turned out that Constance had a blood clot in her leg.
“Racism is implicit and deeply rooted in the very air we breathe,” said Jessica, who started an Instagram account to chronicle her experiences.
Problems faced by blacks in obtaining health care are pervasive. Black people living with serious illnesses receive less help coping with pain and other symptoms and have worse communication with doctors, according to the Center to Advance Palliative Care.
Studies show they are less likely to receive dementia-related medications that can help ease symptoms like hallucinations and depression that make the illness especially frightening for families.
Among nonwhite caregivers, half or more say they have faced discrimination when navigating healthcare environments for the person they care for. Their main concern: Because of their race, providers or employees don't listen to them.
And there are barriers to even being diagnosed correctly. A recent study found that black participants in Alzheimer's disease research studies were 35% less likely to be diagnosed than white participants. Part of the problem is the lack of black doctors. Only 1 in 3 doctors in the country is black, Native American, Hispanic or Asian. This lack of representation has had an aggravating effect on the care Black people receive, especially later in life when older Americans with diseases like Alzheimer's lack the ability to fend for themselves.
All of these things place an enormous burden on the Black families who care for them.
Through her Instagram, Jessica regularly hears from other black caregivers, mostly women, who have eerily similar stories of not being heard, feeling isolated, or being denied proper treatment.
“I think part of my trip would have been significantly different if I had been a middle-aged white man or a white male,” he said. “They would have listened to me the first time.” ___ Jessica has spent the last few months preparing for her mother's imminent death, making sure every detail is perfect.
But, in an unexpected turn of events, she learned in February that her mother would be released from hospice care at home in early March. Medicare generally covers hospice care for terminally ill patients with a life expectancy of six months or less.
Although she remains in the last stage of Alzheimer's disease, Constance is considered stable.
Both appetite and water intake are excellent. Your skin is glowing. She still catches glimpses of his daring spirit.
On the surface, this is good news. Jessica enjoys every extra day she has with her mother.
Still, downloading feels like a slap in the face.
Several studies have found that black patients, across multiple diagnoses of serious illnesses, are less likely to be referred for palliative care or to utilize palliative care.
The loss of palliative care services means Jessica will lose all equipment and supplies, including the hospital bed her mother sleeps in, the elevator she uses to get her out of bed, and her wheelchair. She missed the nurse's weekly visits, vital checks, social worker, and the extra services her mother loved: music and massage therapy.
Jessica is worried about how she's going to handle the next medical emergency. She will have to rely on local hospitals that have provided troublesome care for her mother before.
"It's all gone and it feels like I'm back to square one," he said. “I feel like the system has failed us and many other caregivers.”
It's the most recent upload, but maybe not the last, and it's taking its toll.
At 34, many of her friends are married, raising children, traveling and investing money for the future.
But she had to spend money taking care of her mother, and it largely put her life on hold.
“When you think about how I spent so much time trying not to repeat this cycle of poverty, I'm now sitting in a place where I earn a good salary and yet I'm not preparing for the future that I know. . I should have," he said.
Some days she regrets the life that could have been and all that she had to sacrifice. She sees undeniable parallels between everything her mother sacrificed and what she left behind. But she wouldn't change a thing.
Her grueling experience as a caregiver has added purpose to her life. She feels that she is also helping other Black caregivers to be seen and heard.
For now, he's happy spending time with the woman he calls "CG".
Every morning after Constance wakes up, Jessica turns on the television in her mother's bedroom and tunes to the gospel music station. “Music makes my mother happy. She sang regardless of whether she was in tune or not."
Now the daughter sings to her mother while changing or feeding her. On a recent day, Jessica tried to play "Take My Hand, Precious Lord" while massaging her mother's fingers, before her voice cracked and her shoulders shook as she sobbed.
"Are you saying goodbye?" his mother murmured.
Constance no longer sings or claps, but taps her feet gently under the blanket. And it let out a low, steady hum.
Detroit-based Kat Stafford is a national investigative writer on race for the AP's Race and Ethnicity Team. She was a 2022 Knight-Wallace Reporting Fellow at the University of Michigan. Follow her on Twitter: https://twitter.com/kat__stafford.