Lonely, costly burden caring for sick, elderly relatives
Rose Njoroge a caregiver taking care of her 19-year-old son with Cerebral palsy during an interview on her life journey at Nation Center, Nairobi on December 12, 2024.
Photo credit: Wilfred Nyangaresi | Nation Media Group
The festive period often brings additional stressors that can exacerbate caregiver burnout. As families gather and laughter fills the air, for some, the holidays are a bittersweet reminder of the sacrifices they make for their loved ones.
Rose Njoroge's life took a transformative turn when her son, Joel Njenga, was diagnosed with cerebral palsy 19 years ago. Initially, the festive season was a period of travel and family gatherings. However, the complexities of Joel's condition made such activities increasingly challenging. Travelling became nearly impossible due to Joel's discomfort and health issues during long journeys.
“I carried a full-term pregnancy and delivered him normally,” Rose says. “However, three days later, I noticed he wasn’t feeding well and when I took him back to the hospital, he was diagnosed with jaundice, and while the initial treatment helped, his condition didn’t improve.”
Her instincts as a mother told her that something was not right.
“Over time, Joel’s condition became clearer; his muscles were stiff, he struggled to feed, and his developmental milestones were delayed. Eventually, a neurologist delivered the devastating news telling me that my son had brain damage. The doctor bluntly told me,” Rose recalls.
In the early years, she attempted to maintain holiday traditions; visiting family upcountry, travelling and hosting guests.
“But travelling with Joel was nearly impossible. He’d cry uncontrollably during long matatu rides, and the change in environment would trigger health issues. We’d often end up in the hospital instead of enjoying time with loved ones. On the other hand, if we all travelled and left him in the care of a caregiver, I would get back home and the look on his face would make me feel guilty. I didn’t want him to feel left out,” Rose explains.
Rose Njoroge poses for a photo with her son, Joel Njenga at their home in Kangundo on December 12, 2024.
Photo credit: Pool
Consequently, Rose chose to stay home during the holidays to ensure Joel's comfort and safety. This decision, while isolating at first, became a new family tradition embraced by her supportive husband and other children.
“We celebrate quietly now, just us. My other children and my husband have been incredibly supportive. They’ve embraced Joel fully, and that love keeps us going.”
The physical toll of caregiving is immense. Rose’s days begin before dawn and stretch long into the night.
“Joel is 100 percent dependent on me. I have to turn him several times at night, change his diapers, and interpret his sounds to understand what he needs. I haven’t had a full night’s sleep in years,” she says.
The financial burden of Joel's care is significant too, with monthly expenses exceeding Sh20,000 for medication alone, alongside costs for adult diapers, special diets, and essential therapy sessions.
"Therapy is like food for children with cerebral palsy. Without it, their muscles stiffen, and they lose the little mobility they have,” she explains.
In 2018, Rose turned her struggles into a mission to help others by founding the Joen Cerebral Palsy Centre. The centre provides free therapy sessions, counselling, and support for families of children with cerebral palsy.
“When I saw other parents struggling, I knew I had to do something. At Joen, we create a safe space where parents can share their stories and find strength in each other. Operating the centre has not been easy. The financial strain is constant, and the centre has faced challenges like losing its rented premises during the Covid-19 pandemic. Currently, we operate from the verandah at my home,” the mother of four tells Lifestyle.
At 34, Rosemary became the primary caregiver for her mother, diagnosed with Alzheimer's disease in November 2021.
She admits that it is overwhelming.
“Caregiving has taught me resilience and the importance of finding purpose even in the hardest times.”
Balancing caregiving, Rosemary and her four siblings established a rotating care system to ensure their mother received continuous love and family support.
“We do it together. Right now, she’s with my sister out of the country, and it’s giving me a moment to breathe and reflect,” she says.
Rosemary paused her career as a dietitian to step into the role of taking care of her mother. “At first, I didn’t even know what caregiving meant. It was like my life was put on hold. Then I started documenting my journey; how I feed her, how I engage her and that gave me purpose.”
This documentation evolved into Rosemary’s Nutricare, an online platform where she shares tips and insights on caregiving and nutrition.
While Rosemary has embraced her role, the journey has been emotionally taxing. “You look at your loved one, and it’s like you’re seeing them fade away piece by piece,” she says. Moments of exhaustion and self-doubt prompted her to seek support through caregiving groups and educational programs.
“I joined a dementia support group and took an online course to better understand the disease progression. It changed everything. I felt equipped and less alone.”
For a moment my life revolved around my mother to an extent that I didn’t even know what my purpose in life was but now this changed when I joined ADOC, a support group. Rosemary has now found ways to reclaim her identity.
“I’m more than just a caregiver. I’m a daughter, a dietitian, and now, an advocate for dementia awareness. My efforts have led to public speaking engagements and collaborations with caregiving organisations. Helping others through my story has given me a renewed sense of purpose,” she says.
Though her mother is away this holiday, Rosemary says, “We pray together every night, even when we’re apart. Being a caregiver is not easy but when I see her smile, it reminds me why I do this,” she says.
Geriatrics care
Dr Roselyn Ngugi, a consultant physician and endocrinologist specialising in geriatrics, balances her professional expertise with personal caregiving responsibilities for her elderly mother and grandmother.
Her passion for geriatrics was ignited by caring for her father, who suffered from multiple health conditions before his passing in 2004.
“My father had diabetes, high blood pressure, prostate cancer, and heart failure. At the time I was studying at a medical school in Tanzania. I decided to take a break from school and return home to take care of him. By the time I returned home, he was paralysed from the waist down and needed constant care,” she says.
For over a year, Roselyn’s life revolved around her father. She managed his medications, blended his meals, and accompanied him to endless hospital visits.
“We turned his bedroom into a mini-hospice. At night, my brothers and I took shifts caring for him. Despite the strain, we were determined to give him the best care possible.”
Twenty years after her father's death, Roselyn has found herself stepping into another caregiving role, this time for her mother and grandmother.
Her mother, aged 74, suffers from systemic sclerosis, rheumatoid arthritis, and a heart condition. Her grandmother, aged 90, has senile dementia and experiences frequent falls.
The two live with her family, necessitating significant adjustments, including moving to a larger home and hiring additional caregivers.
“In 2019, my mother moved in with my family for what was supposed to be a short stay,” Roselyn recalls. “Five years later, she’s still with us. When my grandmother began needing care as well, we brought her home too.”
To accommodate their needs, Roselyn and her husband whom she describes as her greatest support, had to move to a larger house.
“We hired additional caregivers, but the financial and emotional strain is immense. My mother’s medications cost Sh20,000 a month, my grandmother’s are Sh15,000, and we spend nearly Sh40,000 monthly on caregivers,” the mother of two says.
Sacrificing the festive spirit
For Roselyn, the festive season has become another reminder of the sacrifices caregivers must make.
“Before, we’d travel or plan holidays. Now, the anxiety and disruption a trip causes for my mother and grandmother make it nearly impossible. Any change in routine destabilises them,” she says.
Planning holidays is a logistical puzzle for Roselyn. Hotels must be wheelchair accessible, meals delivered to rooms, and transportation arranged to minimise discomfort.
“Once, we took my grandmother to the Coast so she could touch sand for the first time in 50 years. While it was beautiful, the effort it took to get her there was overwhelming. We’ve since decided that staying home is easier,” she says.
The challenges of caregiving go beyond financial strain. Roselyn speaks candidly about the emotional toll. “You’re constantly anxious, wondering if they’ll fall, have a stroke, or a heart attack. I’ve had to start therapy to cope with the stress, which has triggered my own health issues, including a condition called myasthenia gravis [ a chronic autoimmune disease that causes muscle weakness].”
Even the small moments can be difficult. “Both my mother and grandmother have dementia,” she says. “Conversations are repetitive, and if you mention they’ve already told you something, it hurts them deeply. You learn patience, but it’s not always easy.”
The sacrifices extend to her professional life and parenting. “I often miss my son’s school events because I’m either working or caring for my mother and grandmother.”
A call for change
Through her work in geriatrics, Roselyn advocates for systemic changes, including caregiver leave policies and affordable care options.
“Caregivers need counselling, financial relief, and recognition. The government must prioritise policies that support the elderly and their families,” she says.
For these caregivers, sacrifice has become second nature. Whether it’s giving up holidays, sleep, or personal ambitions they have learned to put the needs of their loved ones first. However, Tasneem Yamani, a geriatric practitioner says that caregivers need emotional support as they can get overwhelmed.
“Being a caregiver can be challenging. You find yourself going through sleepless nights, having long days with no time for yourself because it’s a 24-hour affair. To help a caregiver, there is a Zarit Burden Interview that you take them through. It has a set of about 15 questions that you score on a scale of 1 to 7. The higher the score, the higher the strain. Once you identify strain in caregivers, it’s important now to go back to the drawing board and see, if this person getting enough rest. Do they have medical conditions they are suffering from which are being ignored? Are they getting enough rest? Are they psychologically involved in a way that it’s causing psychological stress or trauma? If you don’t do all this, you’ll have a caregiver getting burnt out and probably falling sick,” she says.
