‘I gave up everything to take care of my mentally ill mother and autistic brother’

Viona Wamuyu is a natural nurturer. You can see it in the way she delicately plucks dry leaves off the plants that line the path to her just outside her home in Nakuru. She gently lays the dead leaves at the base of her potted plants like a blanket.

As she does this, her countenance radiates peace. But peace does not quite accurately describe her life. Not entirely. In late February, Viona, 36, had had it with her life. 

Caring for her schizophrenic mother and autistic brother for more than a decade had taken a heavy toll on her. Her life was coming apart. 

By the time she took to TikTok to share her woes with the world, she had reached the end of the rope. In five minutes, she summarised what her adult life has been like: providing and caring for her fully dependent kin round the clock while neglecting her own comforts and dreams.

The video was an instant hit. By the time of writing this article, more than half a million people had viewed it on TikTok. It had also gone viral on WhatsApp groups as hundreds sympathised with her situation. 

Viona recently shared her journey of hope, loss and rediscovery with Healthy Nation, occasionally breaking down but steadying herself to narrate this raw, wringing but inspiring story. 

“My mother has always been sick. She was unwell through her college days. So I was raised largely by my maternal grandparents,’’ she narrates. 

When she had a period of stability in 1991, her mother got married. She and Viona’s stepfather would go on to have a child. Then she relapsed. ‘‘For years, no one understood what her condition was. Villagers said she was mad.’’

For the next few years, her mother shuttled between home, hospital and the streets. Her treatment was barely consistent as her condition grew worse. Meanwhile, Viona would be under the care of her stepfather. ‘‘In 1996, my younger brother Joseph was born.’’

Joe, as they call him, was born with developmental challenges. A sickly wife and now a child with a disability. Viona’s stepfather could not take it anymore. ‘‘He abandoned us. We had to be fended for by our maternal grandparents.’’ 

Going through school was difficult for her, at one point dropping out of Kabarak University because she could not raise school fees. She would later work with the Kenya Red Cross Society after the violence that followed the 2007 elections. Here she earned and saved up some money that allowed her to have a fresh stab at life.

Viona later moved to Nairobi to look for work. She secured a job at a city cybercafé, which would sustain her for months. ‘‘I was also lucky to secure a partial scholarship to study international relations and psychology at USIU (United States International University-Africa),’’ she recounts.

By now, her brother was staying at an orphanage after relative after relative rejected him. This development shook her. But it is the discovery that her mother was living in the streets of Nakuru town that broke her heart. 

‘‘I was forced to discontinue my studies again. Firstly, because I could not afford the school fees. Secondly, I could not bear having my family scattered.’’ 

Viona was back in the streets to hustle. From hawking mitumba (second-hand clothes) to artworks, trying her hand at poetry and planning events, there is little she has not done to eke out a living in the city. With a family to mind and a life to build, she always came short. 

‘‘I had to take up any job.’’ Any, including housekeeping at hotels in Dubai. To do this, she first needed to undertake a short course in housekeeping. Just when she was about to fly out of the country in search of a fortune abroad, something happened. 

‘‘I learned that my mother’s condition had deteriorated. I moved back to Nakuru in 2013 to take care of her.’’ Thus her dream of a Dubai job crumbled.  

By this time, she was already in a relationship. Thankfully, her partner was understanding and supportive of her family situation. ‘‘As soon as we settled in Nakuru, we took my mother off the streets. I was also able to trace my brother. He too moved in with us.’’   

Two years later, their daughter Naimani came. The family was now coursing a peaceful period, albeit with the routine difficulties of caring for two relations. Three years later, the couple started experiencing marital problems. 

She says: ‘‘His family felt that my family was too dependent on their son.’’ They separated in 2020, leaving the care of her mother and brother, once again, on her hands. 

It has now been 11 years since she took up this responsibility. On the morning she made the TikTok video, she was at her wit’s end. ‘‘I did not have money to refill my mother’s dose. I could not afford Joe’s medication. Medication helps to manage their different mental conditions.’’ With none left, and no means to replenish the dose, she was staring at chaos.

‘‘I have been doing online jobs. Sometimes there are payment delays. I also cannot work in a job that takes me away from them. They cannot be left unattended,’’ Viona explains. 

She says the motivation to film herself was to secure a quick loan to help her sort the medication and household utilities. But also to vent. ‘‘It was the first time I was seeking support from strangers. I felt cold, stiff and completely alone.’’

The thought of her family without her care makes her shudder. She wonders, panic-stricken: what would happen to them? Would anyone else embrace them? 

On the day she recorded the video, she was tired, frustrated and helpless. ‘‘I had done all I could to care for my mother and brother. I had nothing else left. I broke down. I felt sorry for myself and others in my situation.’’  

Her dream has always been to study international relations and to work with organisations that influence global policies on women and youth. ‘‘Is this ever going to happen?’’

As she grew up, she, somewhat, knew the responsibility of caring for her mother and brother would fall under her feet. What she did not know was the enormity of the task. ‘‘How do you parent your parent and sibling?’’ she wonders, now sliding into unconscious monologue. 

caring for the duo is strenuous enough. But dealing with her brother’s rage is another. ‘‘He breaks everything around him. He has the body of a 28-year-old but the mind of a five-year-old boy.’’ In his latest fit, he broke the family TV. On a different violent occasion, he nearly broke her arm. Viona says dealing with him during such moments drains her energy and patience.      

‘‘I am burnt out. I feel lost. I do not know what to do anymore. I am a shadow of my younger self. I do not even recognise who I truly am anymore. I am empty and I have nothing left to give.’’

For her, this emptiness to fill her kin is a daily sacrifice. Destiny. ‘‘If I am not there in a week, my mother would be back on the streets. Joe would starve.’’

Since the video went viral, she has received overwhelming support, material and moral. Her phone has been ringing incessantly. ‘‘I get a lot of messages from other caregivers sharing their experiences. These people have found a safe place. I want to be there for them.’’

She had not anticipated this kind or scope of reception. At one point, she considered deleting the video. ‘‘Mental health is not just about disorders. It is also about the everyday toll on family and friends as they try to offer support.’’

Viona is no stranger to the stigma that comes with caring for mental health patients. She has experienced it in all its shades. ‘‘I have put up a strong support system for my family. I do not hide them. I allow everyone to freely interact with them. Joe plays with children in my neighbourhood.’’ 

She feels caregivers are often ignored. Not only those caring for mental health patients but also those helping patients with other terminal and chronic conditions. ‘‘The government needs to find a way to support caregivers. We are forgotten. We need to be seen and appreciated.’’ Through her video, she says she was invited to join a network of caregivers. ‘‘It is priceless to know you are not alone.’’

This hope of renewal has reawakened her dream. ‘‘I would like to go back to school and to become a career woman,’’ she says. But she also dreams of the relief of having someone else take care of her family. ‘‘If I got someone to do this, I would go somewhere and switch off for some time and sleep out the fatigue.’’ 

So, what does psychology say about compassion fatigue?
Veronica Ngechu, a counselling psychologist based in Nakuru, says Viona is experiencing compassion or empathetic fatigue. The Canadian Medical Association describes compassion fatigue as the cost of caring for others or sympathising with their emotional pain. This often results from the desire to help relieve their suffering.

Also known as vicarious or secondary trauma, this form of fatigue occurs when one allows or is forced to bear other people’s trauma as their own. 

Ngechu says age, gender and social network are some of the predisposing factors that could lead to the condition. ‘‘Young people are more likely to be overwhelmed because they have not developed their resilience. The more isolated someone is, the more likely they are to experience compassion fatigue.’’ 

‘‘Familial obligations often lead to compassion fatigue because one is exposed to an environment that is heavily dependent on them,’’ the psychologist adds. 

This condition is common among caregivers, police, social workers, doctors, nurses and humanitarian workers. Research shows this fatigue has physical, behavioral and cognitive expressions. Physically, the condition manifests through insomnia, body aches, including neck pains, persistent headaches, backaches and gut complications.  

Explains Ngechu: ‘‘The body keeps a score whenever you expose it to difficult situations without the proper support. When you do not respond to some signals like symptoms, other symptoms show up. These are psychosomatic symptoms.’’

Meanwhile, behavioural changes include high levels of irritability, isolation, seclusion and a low social battery. Some people tend to make mistakes they do not usually make and to doubt themselves. It also yields the imposter syndrome.

Cognitively, it manifests through memory loss, brain fog, anxiety and feelings of foreboding.

In far worse cases, helplessness and hopelessness could lead to suicidal ideation. Some individuals resort to self-harming behaviour such as poor eating habits. 

Treatment involves providing a support system and making the person understand they are not alone.  Self-care is also imperative. ‘‘You need to give from a place of abundance. To do that, you must first enrich yourself. Ask yourself: are you getting enough sleep? Are you well groomed? Are you eating a balanced diet?’’ the psychologist poses.

She notes that spending time with friends and developing oneself helps to cope with the condition. ‘‘Caring for another person for 10 years while you have not grown yourself is psychologically damaging.’’ 

Ngechu says one’s extended family should be the first pillar of support. ‘‘To seek help is an act of courage. It is not a weakness.”

Coping and Management

It is recommended that one practices mindfulness throughout the day and being present in their thoughts, feelings and physical sensations. When anxiety kicks in, one should calm themselves down by breathing slowly. 

If you feel overwhelmed and out of control, take a moment to think about what you have control over and what you can change. Establishing a solid self-care routine that includes eating healthy, getting more exercise and getting enough sleep is a plus.

Reach out to others for support. Additionally, set aside time for meaningful activity and find ways to connect with loved ones. Most importantly, take a break from the news and limit the time you spend online every day.

Symptoms of compassion fatigue include:

•    Feelings of helplessness and powerlessness 

•    Reduced feelings of empathy and sensitivity

•    Being overwhelmed and exhausted by work demands

•    Detachment, numbness and emotional disconnection

•    Loss of interest in activities one used to enjoy

•    Increased anxiety, sadness, anger and irritability

•    Difficulty concentrating and making decisions
Physical and social symptoms:
•    Headaches, nausea, upset stomach and dizziness
•    Increased conflict in personal relationships
•    Negligence of one’s self-care
•    Withdrawal and self-isolation
•    Difficulty sleeping and sleep disturbances such as nightmares
•    An increase in substance use as a form of self-medication

Where to find help in Kenya
There are several places one could find support. These include:
•    Psycho-oncology Society of Kenya:
•    Suruvi Care for Caregivers
•    Step by Stones Association
•    Nairobi Parkinson’s Support Group
•    Stroke Association of Kenya
•    Faraja Cancer Support
•    Dignified Care