Hypertension and the burden of care for family caregivers

Each year, approximately 12 million people suffer a stroke, with 6.5 million fatalities resulting from it. Among women, stroke ranks as the third leading cause of death, claiming the lives of more women than men.

Several predisposing factors contribute to the risk of stroke. These include high blood pressure, smoking, and increased rates of depression. However, 90% of strokes could be prevented by addressing manageable risk factors, such as physical inactivity.

In Vokoli, a small village in Vihiga County, lies Esther Kahandari. Esther is a matriarch, mother, and grandmother whose life is defined by both joy and struggle. She embodies a delicate balance of tradition and the heavy burden of chronic illness. 

Born in 1928, she spent her days in the family homestead, surrounded by the lush green hills of a region renowned for its agricultural richness. Farming is a way of life here, characterized by two planting seasons and a focus on small-scale tea farming.

Esther’s life in Vihiga, is deeply rooted in the traditions of her ancestors. She was known for her exceptional cooking skills and delighted her family with meals featuring indigenous vegetables like mrenda, kunde, managu, terere, and sagaa. 

However, it wasn’t just the ingredients that set her apart; it was how she prepared them. Adhering to traditional methods, Esther avoided ingredients like bicarbonate. Instead, she opted for “omukereka,” a natural softener derived from agricultural waste. This mineral-rich seasoning, dissolved in water and strained, imparted a smoky, earthy flavor to her dishes, showcasing her connection to the land and its resources.

Beneath the simple rhythms of Esther's rural life lay a battle that would alter her family's course forever. In 1993, she suffered a stroke—the first devastating sign of the toll that hypertension had taken on her body. 

Like many in rural Kenya, her family had limited access to healthcare. Her chronic condition had gone unnoticed for years, silently wreaking havoc on her health.

“Hypertension, commonly known as high blood pressure, is a crucial risk factor for stroke,” explains Dr. Eric Anyira, a cardiologist in Kakamega. 

“It significantly increases the likelihood of both ischemic and hemorrhagic strokes. Ischemic strokes occur when blood flow to the brain is obstructed, often by blood clots. On the other hand, hemorrhagic strokes arise from the rupture of blood vessels in the brain, causing bleeding. A hemorrhagic stroke is deadly, often leading to rapid fatality within minutes or days. Chronic high blood pressure damages blood vessels, making them more vulnerable to clots and ruptures, thereby elevating stroke risk.”

Hypertension can be categorized into two main types: primary (or essential) hypertension, which develops gradually over time without a specific identifiable cause, and secondary hypertension, resulting from underlying health issues such as kidney disease, hormonal disorders, or certain medications. Secondary hypertension can develop suddenly and may be more severe.

Impact of Hypertension

For Esther, hypertension was a risky condition that compounded her risk of stroke. It left her paralyzed on one side and reliant on her family for care. 

Her granddaughter, Beatrice Andesia, recalls the day they learned of her illness: “I was in lower primary school when it happened. We later discovered that Grandma had been battling hypertension, a condition we didn’t fully understand at the time.” She recollects pointing at her grandmother’s gravestone. Esther passed away in 2012.

In the 1990s, public awareness of hypertension was minimal, particularly in rural areas. Managing chronic illnesses like hypertension was a considerable challenge even in cities with access to modern healthcare. 

In Vihiga, where clinics were few and far between, it was nearly impossible. Esther’s stroke served as a harsh reminder of the dangers posed by unmanaged illnesses.

The World Health Organization (WHO) reports that cardiovascular diseases, including hypertension and stroke, account for 13% of all deaths in Kenya. 

These diseases are especially prevalent in rural areas like Vihiga, where healthcare infrastructure is often lacking. Without access to regular check-ups, diagnostic tools, or medication, managing such conditions becomes a challenge that many rural families are ill-equipped to face.

The Burden of Care

As Esther’s health deteriorated following her stroke, the family had to make significant adjustments to their lives, including diet. 

The responsibility of her care primarily fell on her second-born daughter, Nancy Mmbone, and her daughter-in-law, Rebecca Andia. Both women, now retired teachers from Sabatia in Vihiga County, faced the challenge of managing Esther's needs while navigating their own lives.

Nancy, a widow raising her children, took on the immense task of caring for her bedridden mother. 

“I would come once a week to help with cleaning her bedding, sometimes every two weeks, depending on my commitments,” Nancy recalls. “I would wash her bedding, cook for her, and ensure she had everything she needed.” 

As Esther’s condition progressed, she was placed on a catheter, which eventually became loose, leading the family to discontinue its use altogether.

This experience highlights the profound emotional and physical demands placed on family caregivers, particularly in the context of chronic illness. Nancy and Rebecca's dedication reflects the broader societal expectations placed on women to provide care without adequate support or recognition.

For over 20 years, Esther was cared for primarily by her family, in hospital and at home, with Nancy leading the effort. This arrangement reflects the unpaid care work that sustains many families in Kenya. Here, healthcare systems are often overwhelmed, and families are left to shoulder the responsibility of long-term care. 

According to the Kenya National Bureau of Statistics (KNBS) Kenya Time Use Survey 2021, women in Kenya perform five times more unpaid care work than men. 

This includes looking after children and caring for the elderly and sick. This labor goes unrecognized and uncompensated, even though it is essential for the well-being of the community.

Despite the exhausting nature of their caregiving duties, Nancy and Rebecca never complained. For them, caring for their family member was an act of love and duty, even at a great personal cost. “It was exhausting,” they both admit. “But that’s what family does. We take care of our own.” This illustrates the sacrifices caregivers often make, usually at the expense of their own economic opportunities.

Despite Esther's advanced age and health complications, the family sought ways to help her regain mobility and independence after her stroke. 

Physical rehabilitation is critical for stroke patients experiencing paralysis, as emphasized by John Luchwala Masinde, a physiotherapist at the National Spinal Injury and Referral Hospital. 

“In the hospital setting, physiotherapy and occupational therapy help manage movement difficulties, restore coordination, and strengthen muscles,” Masinde explains.

Range-of-motion exercises, which involve gently moving paralyzed limbs to prevent stiffness, are crucial in the early stages of recovery. Strengthening exercises—such as leg lifts, arm raises, and resistance training—help patients regain muscle strength once some mobility returns. 

Balance and coordination training also play a vital role, allowing stroke survivors to rebuild stability and function. In cases like Esther’s, task-oriented training—where patients practice everyday activities like reaching for objects or dressing—can improve muscle coordination and restore a sense of independence.

However, after hospital discharge, patients often return to their communities, where access to professional rehabilitation services can be limited. In these instances, families take on the role of caregivers and facilitators of rehabilitation. 

Esther's family, though lacking formal training, did their best to provide her with consistent care. “She needed assistive devices like a wheelchair, and later we used makeshift toilet aids to help around the house,” Beatrice shares.

Masinde emphasizes that continued rehabilitation is key, even at home. “It’s important for patients to stay on their medication and continue physical therapy, even at home. With proper management, many patients can live with the effects of stroke for years,” he says.

Emotional and Physical Toll

As Esther’s condition worsened, her frail husband could not assist. Therefore, Rebecca, her daughter-in-law, took charge of getting Esther to bed each night. She did it out of love and a sense of duty. 

This selflessness, while admirable, underscores a broader societal issue: the expectation that women, particularly in rural areas, will take on unpaid care work without recognition or support.

This is the reality for many Kenyan families. Women often bear the brunt of care giving responsibilities, sacrificing their own opportunities for the sake of their loved ones. Yet, this labor remains invisible, uncounted in the formal economy, and unacknowledged by policy.

As Esther's life neared its end, the toll of care giving weighed heavily on the family. Nancy and Rebecca had shouldered this responsibility for over two decades, navigating the physical and emotional challenges of caring for a loved one with a chronic illness. 

Despite their struggles, these two women have become symbols of resilience, representing countless others across Kenya who provide care for their families without compensation or recognition.

Their experience highlights a broader societal issue: the expectation that women will take on unpaid care giving roles without adequate support or acknowledgment. This narrative resonates deeply within the context of Kenya, where many families face similar challenges.

Esther's journey, marked by resilience, dedication, and sacrifice, illustrates the profound impact of chronic illness on families, particularly in rural communities like Vihiga County.

As the burden of care giving falls disproportionately on women, it is crucial to recognize their contributions and advocate for policies that support families facing chronic illnesses.

While Esther may no longer be with us, her legacy lives on through her family. It is a reminder of the strength of women who continue to care for their loved ones, despite the challenges they face. 

They are unsung heroes, deserving of acknowledgment and support as they navigate the difficult path of caregiving. 

Their stories reflect the need for better healthcare access, support systems, and recognition of unpaid care giving work in rural Kenya.