The reasons why we do the things we do will not always be the ones that others will remember. – Stay With Me, Ayobami Adebayo

Imagine dying because you forgot to breathe. Joel Kasimu was a policeman, an Officer Commanding Police Station (OCS). His wife, Rose Wambui , described him as a patriotic man who lived to serve Kenya, “He was so proud of his job, how he would get up, dress and prepare for work in his uniform,” she explains, lifting her chin to mimic his posture and recalling how the 6-foot-tall man stood akimbo in his uniform, ready to leave home and serve the nation. Having suffered from diabetes, he reluctantly went on early retirement in 1985 on medical grounds at around the age of 55. Mr. Kasimu did not know his exact age. It was the time when you started school once you could touch your left ear with your right hand by passing it over your head.

A couple of years after his retirement, in 1989, Joel’s eldest daughter from his first marriage died of cancer. His first wife had also died years back and that was when he married Rose. In a short span of time Joel had lost both his work and a daughter. Elizabeth Mutunga, his first daughter from the second marriage, described the conspicuous changes that led the family on a 17 year journey of turmoil in the home. Changes that left them perplexed at to what was really happening. “First, he moved us from a four bedroom maisonette into an iron-sheet building round the corner. Then he sold his car, but first he sold the tyres then the body.” With time, things got worse. Mr. Kasimu would want to go to church on a Tuesday. When the family told him they would go on Sunday as they always did, he would get agitated and restless. He was a knowledgeable man, who served his country as an OCS, how could they patronise him in that way?

When Elizabeth finished high school in 1992, she took up her first job as a laundry operator at the Nairobi Safari Club, for a salary of 5,000 Kenya Shillings. With the changes in the home, this enabled her to support the family. “Dad beat me until he broke my arm,” she shares, maintaining eye contact, not letting her head drop at this painful memory. Joel thought Elizabeth was interfering with his ability to take care of his home as the head of the family. The reasonable, well weighed father was gone and in his place was a man trapped in his long-term memory whilst losing his sense of the immediate world around him – this terrified him as much as it did his family.

Year in, year out, Elizabeth and her family would adapt to this new life as they watched their circumstances aggravate, not sure what more they should or should not do. “People start to avoid you because they think it is contagious or that you are bewitched,” she explains what a lonely place it can become. As Joel Kasimu’s condition continued to worsen, he sometimes wore pyjamas over his clothes, would hoard and hide things for the fear of theft, then forget where he had placed them and accuse his beloved caregivers of stealing. Joel would sometimes wake up and throw a fit at the stranger next to him, his wife Rose, “Who are you, what are you doing in my bed; I am about to get married,” he would tell her. To defend himself from the imagined threats, and with the innate strength of a policeman, he would strike her. As Joel approached the end of his mortal battle, having survived two strokes, he became bedridden. He transitioned to the afterlife when he forgot to breathe at around age 86. Elizabeth remains surprised that he lived that long seeing that the family only confirmed his diagnosis as dementia in 2007, only two years before his death. “Without proper care, most would not live that long. Caregivers become depressed because they are overwhelmed and do not understand what has happened to their loved one,” Elizabeth said it was not easy but somehow they pulled through and stayed a family. In many cases, a family would take their loved ones to mental institutions, such as Mathare, where they are misdiagnosed and given the wrong medication.

Rose and her daughter Elizabeth looking through old family photos

Dementia is a disease that causes the degeneration of the brain, “basically, your brain is dying,” explains Elizabeth. She only got to understand this when she finally started doing her research, a few years before her father passed on. However, Elizabeth was also trying to break glass ceilings in the corporate world. She wanted to ensure that her younger sister still got an education despite the change in their circumstances. She recalls the time her father said, “We do not educate girls,” when Elizabeth’s younger sister was set to join high school. Of course this left them stunned and hurt, seeing that he made sure Elizabeth got the best education possible. Though her aim stayed to climb the ladders of the corporate world, Elizabeth felt strongly about the fact that there was nowhere for caregivers of people living with dementia to turn to. She started by writing her own stories and the experiences she and her family were going through. Her writing also helped her audience start understanding what dementia was. Elizabeth went on to found an association in 2007, the year her father was finally diagnosed with dementia. At that time dementia was still thought of as a disease of the Western world in Kenya. Thanks to the association, caregivers began to gather every other time to offer each other support and share their experiences. But her busy schedule did not bring much out of this association until life obliged her to follow her calling when she was retrenched in 2016. This led her to solidifying the association by making it an NGO, the Alzheimer’s & Dementia Organization of Kenya (ADOK). After lots of lobbying with partners and the Ministry of Health, the first ever World Alzheimer’s Day was held at the Kenyatta National Hospital on the 18th of September, 2018.

Dementia has several forms, with the most common being Alzheimer’s, where the effect on the memory is distinct. In some African traditions, as the story goes, it was believed that a person living with Alzheimer’s – as we’d now diagnose it – was transitioning to the next life. The symptoms of this transition happened with older people. Death was a close reality, hence the association to the afterlife. The reason it was seen as a transition is because people with Alzheimer’s rely on their long-term memory. This means they will often talk to people who are already dead – ancestors. They often refer to situations in the far past, some of which the immediate family may not know of. They may reveal family secrets – mysteries no one had answers to come to light, items or property hidden many years back may be found; they become like seers, appearing closer to some divine knowledge. In a less venerating way, they may be seen as possessed by evil spirits (bewitched) and to be avoided. Other forms of dementia like the frontotemporal may not affect the memory as immediately as Alzheimer’s. Here the patient would be affected in their obsessions to things like collecting items, lack of embarrassment in social situations, a diversion to strange interests that contradict their usual hobbies or contradictory emotional reactions to events, for example, laughing at a funeral. Due to the paranoia caused by the dementia, violence, unfortunately, is common.

Growing ADOK has had it hurdles. First and foremost, there is very little data on dementia in Kenya. “When a patient with dementia goes to a hospital and describes their symptoms, they will be treated for the headaches or other ailments,” Elizabeth explains the efforts of the organisation to work with partners such as the government, to implement structures in all hospitals that can help medics diagnose and record cases of dementia. This may include a questionnaire to patients who show related symptoms and are above 60 years of age. They would be asked questions such as: Who is the president of this country? Where are we now? What day is it today? However, studies show emerging evidence to suggest that modern lifestyles (where people are more stressed and less active added to the chemicals in food and environmental changes) may be causing early onset of dementia in young adults (in their 30s and 40s).

Recalling fond memories of times with their loved one.

By understanding the symptoms, carers would be better equipped to manage the negative symptoms of this disease. Learning how to keep them busy and on a schedule they can follow through the day reduces the rate at which a loved one would deteriorate. It is also best to avoid moving them out of a familiar place, such as from their hometown to the city. This would further disorient them and make them paranoid. Things such as the change in the air could also affect them. Urban air is more polluted, the highland air they may have been accustomed to is less dense, and so on. Another vital aspect to it all is communication, “For example, you want them to take a shower, they throw their hands in the air and refuse, do not insist, leave and come back after a new minutes,” Elizabeth explain that you should return and make the request as though you hadn’t done so before, start with a greeting, keeping a low and kind tone, smiling and friendly body language. You may need to do this several times. The frustration may cause you to raise your voice, but this kind of confrontation may lead to violence – because they can not run away, they will fight you. “They would not want to be in the position they are in,” Elizabeth emphasises that only empathy can give you the patience you need to be a loving caregiver. Going through old photo albums creates a connection and could help them remember people and places, if only for a moment.

Going through photo albums to recall special moments in a loved one’s life

ADOK’s vision is ‘a Kenya without dementia’ because research is going on and Elizabeth hopes that one day they will find a cure. Besides that, by creating awareness on the avoidable risk factors such as excessive consumption of alcohol or excessive smoking, not exercising your body, not keeping your brain active (particularly after retirement): one can learn how to play a musical instrument, learn a new language, do crosswords. It is important to have a support system after a loss and socialise face to face by making intentional efforts to connect with people, away from the gadgets.

Lastly, women are more prone to developing the Alzheimer’s form of dementia. Research from the Euro-American world suggests that over 60% of unpaid dementia caregivers are women who themselves have a 1 in 6 chance of developing dementia, compared to 1 in 11 for men. Some speculate it is hormonal, others say it is because women live longer or is it that women the bigger emotional burdens in families? May it be because women are always multitasking verses being intentional about what they are doing?

Elizabeth’s top tip for caregivers: Many times the caregivers are forgotten. Caregivers also need caregiving. When you are trying to cope and you do not know how to cope, you end up also getting illnesses such as ulcers or depression. Sometimes getting extra care is expensive for families, especially if the loved one suffering from dementia was the breadwinner. Call in family members to step in, be it for a day or two or even an hour; go have a cup of tea with a friend and recuperate.

Joel’s wife, Rose Wambui aka Mama Elizabeth

Mama Elizabeth’s top tip for caregivers: When it happened to us, we did not have the information that is now available, we said, ‘if we only did this’ or ‘we could have done this’ but now there are opportunities to get some answers and support. Caregivers, do not struggle by yourselves.

JUSTUS MBATHA

His wife was a teacher. Around 2010, Naomi started complaining of severe headaches. “Take me to the hospital, there is something in there,” she’d say. The doctors would prescribe painkillers and send her back home. When that failed, the Mbatha’s attempted special prayers from pastors – that too did not ease the ‘thing’ she felt was in her mind, causing her the unbearable headaches.

Over time Naomi became increasingly anxious and had started losing her memory. At some point she did not recognise their 5 children or her husband. He decided to move back to Machakos in June 2014 after having lived in Nairobi for a whole 32 years. The environment would be more secure and serene; Naomi would not be as prone to getting lost when she wandered away, forgetting her way back home. Her situation did not improve. As a last resort, one of his daughters accompanied Justus and his wife to India, New Delhi, in October 2015, for a proper diagnosis and high hopes for a cure. “She was admitted for one week. They had accommodation for visitors but I chose to sleep with her in the hospital,” Justus explains how difficult it was hearing the doctors reveal that she would never be cured. “But they gave us medicine to manage the anxiety, which she still takes … I feel bad.” Naomi is now 67 years old and Justus is 70. He loves his wife as he always had even if he cannot enjoy the companionship they once shared.

Justus’s top tip for caregivers: Some people leave their spouses, but this does not solve the problem. You will ruin your family, your children will doubt you. I have accepted the situation. Suppose it was you in that position?

I have a farm in Wamunyu where I grow maize, beans, spinach and other local vegetables. I also keep goats and chickens. When I need a break I spend 3 to 4 days working on the farm.

MADAM J

“My mother was me; meticulous about her surrounding … she was more like the patriarch than the matriarch of the home: amazing, driven, dynamic – she was everything to us and did everything for us as her children.” Something was definitely going really wrong, but what it was, remained the million dollar question. Was she depressed? J would wonder when she moved back to her mother’s house in 2010 and found the house neglected and dirty. J’s mother had a helper who came weekly to clean the house and do laundry. She gave the excuse saying that mum did not provide cleaning supplies and she made do with what she had. She did not think to inform the family of the situation. This brought confrontation between J, her sister and her mother as she tried to get the house clean. Mum’s forgetfulness would cause conflict as she claimed she was okay and did not need help in keeping her house in order. Before one gets to understand dementia, you live struggling to fathom the metamorphosis of a once impenetrable relationship with the person who raised you and loved you dearly.

The anonymous Madam J

“Mum would leave home and travel upcountry for quite a number of weeks and by the time she returned, she had lost a lot of weight,” J said it was only after mum was diagnosed with dementia in 2011 that she understood her mother had been forgetting to eat. Luckily for J, their diagnosis came sooner than it did for other people. Doctors said loss – the passing of her husband in 2005 – may have been a trigger for the dementia progression, which according to the CT Scan, had already been developing since 2002/2003. The family hired a caregiver for their mother and J oversaw her care and general upkeep. This was done with help from some of J’s siblings.

Through a caregiving agency, J got to know of the Alzheimer’s and Dementia Organisation of Kenya (ADOK), founded by Elizabeth Mutunga. Attending the support group gave her the insight she needed to help her mother, have empathy for her, understand her sometimes irrational and seemingly unloving actions and most importantly, the group was an outlet; a place to heal by sharing her experience in a room of people going through the same thing.

J had a particularly difficult time with her siblings and immensely benefited from the support she received from ADOK. This compelled her to join the organisation as a volunteer. Having moved back home to take care of her mother, her siblings did not understand the severity of the condition or the toll it took on J to be living with mum as a caregiver. One of her siblings even accused her of stealing from their mother when they found out that she had no money in the bank because she had been withdrawing it and they could not account for how she had spent it. People with dementia do things like give away money, or hide it when they get paranoid and forget where they placed it; sometimes they sell property and loved ones are not able to trace the transaction or how the money was utilised. They later came to know that someone was gladly taking advantage of her situation by accepting large sums of money from mum. The culprit was allegedly using the money to ‘help mum get her documents transferred to her name after the death of her husband.’

Eight years of overseeing her mother’s care, J was approaching a breakdown when she decided to move out of mum’s house after getting a full-time job. It was a difficult decision but it was necessary for her health and well-being. This also obliged her siblings to get involved in overseeing their mother’s care. They became more proactive. J says most caregiving agencies do not have caregivers qualified enough to take care of dementia patients. They learn as they go, “and this makes overseeing your loved one’s care much harder.”

J is now able to visit her mother when she can as she tries to piece her personal life back together and continues working with ADOK on creating more awareness on dementia.

She parts from this story with one regret, that her siblings have not exposed their children to spending time with their grandmother. Enabling such visits would bring much joy to their grandmother and it would help them understand this disease. She says, “If they do not see you looking after your mother, will they look after you?” J expresses her concern about the hereditary nature of dementia as her stern eyes hide behind the shimmer on her glasses.

Madam J’s top tip for caregivers: Communication is key. How we approach a dementia patient and how we speak to them determines how they react. They are inwardly aware of their ‘helplessness’ and would like to be treated with kindness and dignity.

CHANYA C. LENJOU

Chanya is a counselling psychologist and addiction therapist. She had been counseling people with psychiatric disorders as a profession before having to face it at her doorstep when her father seemed to be losing his mind. “In the early 2000s he’d mention forgetting such things as where he had placed his keys and a few details of what he had planned for the day or the week  but we didn’t think much of it other than age catching up,” Chanya explains how dad had started becoming forgetful but this did not affect his planning and execution abilities at that time. He still had a very sharp memory and was highly organised. It was not until late 2012 that noticeable changes suddenly began to present themselves. Charles would ask the same questions several times, “and we would say, ‘dad, didn’t we just answer that?”

Chanya in a moment of reflection

Chanya’s father was an educationist of long standing. He was a high school teacher, then an Examinations Administrator at the KNEC, then a principal, then a District Education Officer and finally a commissioner with the Teachers Service Commission (TSC). Though introverted, he was still very sociable when he was around people and enjoyed the company of friends and family. He also had a good sense of humour. This made it peculiar when Charles told his children visiting him in Mombasa that they had stayed too long and needed to leave. He added that feeding them was expensive and they should contribute to the cost because he could not afford it. This was just after two days of his children visiting him. In an extreme situation dad slapped his grandchildren when he was irritated by their noise and presence; the grandchildren he dearly loved in the mind trapped within his shrinking brain. “This was so much unlike him. We were deeply concerned,” Chanya explains these and many other out of character events that led to the family finally taking him to a neurologist in 2015. In her line of work, Chanya had read of dementia but it had not occurred to her this was what dad had been suffering from until the diagnosis, simply because we do not imagine that such brutal behavioural changes could all be caused by dementia. Loss being a major trigger of dementia, Chanya reflects back on her biological mother’s passing in 2000, and earlier on, the passing of her 3 siblings and her dad’s only sister. Dad remarried but, “I think my step mum just wasn’t meant to be with dad.”  It was hurtful to see the stepmother exploit the father’s deteriorating situation and forgetfulness when dealing with the management of the household as well as finances. Chanya feels the stepmother did not have the love and heart to take care of him. She would leave the house in the morning and not return till evening, leaving him to take care for himself and his two young children. “She would not care what dad wore, so many times, dad would go back to his closet and wear his old tattered clothes, even if he had newer clothes,” Chanya said, thinking about how he related to with his old outfits more than he did to his newer clothes. In the early stages of dementia, the short term memory is the first to get affected, while the long term memory is largely left intact. This could have explained why he would dig through his closet looking for old clothes to wear.

Charles, in his still present determined and organised nature, tried to care for himself but almost burnt the house down the few times he forgot he had been cooking. He would sometimes wake up and randomly take a bus to Nairobi. Chanya would pick him from the bus station, not having prepared for his visit. Within a few hours, dad would say, “I’m done with my meetings so I’ll be going back to Mombasa,” whilst those meetings must have taken place somewhere in his far past. While in Nairobi, he would go for his usual evening walks but then wander off and get lost. Chanya and her siblings would go through a tough time trying to find their dad. Chanya and her four siblings came together and decided to relocate dad to Nairobi as he was not receiving proper care in Mombasa. He had become frail and confused. With work and family demands, they could not regularly travel to Mombasa. They have tried to also maintain a good relationship with their two half-siblings though it has had its rough patches given the discrepancy with the stepmother.

Chanya’s father can no longer take the walks he used to indulge in, he can’t make plans or execute them, he can’t keep a phone because he dismantles the parts, but he is still the father they love.

Chanya parts her story with hope that there will be better awareness about dementia in Kenya, particularly in the public and among medics who should be equipped to notice the symptoms, and law enforcers, who should not treat them like criminals. “People suffering from dementia can be very easily misunderstood, mistaken for a thief or fraudster.” Chanya tells of the time her father refused to pay bus fare thinking he had already paid and the other time he wanted to board a bus from Nairobi to Mombasa with 20 Kenya shillings and insisted on being given a ticket at the booth.

Chanya’s top tip for caregivers: Some pills can be prescribed to help with the symptoms of dementia, such as anxiety, aggression and depression depending on the symptoms your loved one presents. Other pills are used to slow down progression of dementia but do not offer a cure. If detected in the early stages, the medication can slow the degeneration. If detected in the middle stages, as is usually the case, medication will not do much for the patient. There is no need to overburden a loved one with pills especially in the late stages of dementia. More importantly, give them love and warmth, a stable stress free environment, a healthy diet and ensure they have very good nutrition, are kept as active as possible and free from danger.

HELLEN WAMBUI MWITHIGA

While sitting on a bench in the prayer garden of Consolata Shrine on Chiromo Road, the church bells chime. It’s 11 o’clock in the morning. The sun is glorious, illuminating the magnificent consolatory crucifix Hellen is facing. “When dad was diagnosed with Parkinson’s in 1994 at age 42, I used to question God. Dad did a lot, he was a good man,” Hellen wondered if his life was lived in vain when he died. Before the diagnosis, they noticed that he became slower in his movements. The diagnosis was done in the UK because in Kenya nothing was traced after the medical examinations. Luckily they could afford it as Hellen’s dad ran his own business – an audit firm. Parkinson’s is another illness with as little awareness as dementia in Kenya. “It is not like you do an X-ray and get a diagnosis, it comes about when your body is no longer producing enough dopamine,” a hormone we all need. It acts a chemical receptor, which sends messages from you brain to whichever part of the body, resulting in the required movement, explains Hellen.  Once a person’s dopamine is below 60 percent of the required value, you no longer have smooth movement: walking, talking, moving your hands, chewing food. We mainly recognise it by the involuntary shaking of someone’s hands or head. That’s the first reason those suffering from Parkinson’s do not wish to be seen in public – the staring crowds. Like dementia, Parkinson’s is also a neurodegenerative disease because the brain is responsible for the production of dopamine. With time the involuntary movements and inability to control one’s muscles may lead to drooling. And like dementia, there is no cure. As the condition worsens, it may lead to what is called Parkinson’s Dementia, as the person begins to forget things and places and people. Whilst with dementia one first loses their cognitive abilities before they lose their physical abilities, it is vice versa for Parkinson’s Dementia.

God responded to Hellen’s doubts when she decided to found the Africa Parkinsons Disease Foundation. She was driven by the gap she realised Kenya presented in understanding the disease and supporting loved ones. The neurological space of medicine in the country does not adequately cater for such diseases. Kenya has only slightly over 2,000 specialist doctors in the whole country and less than 15 neurologists, who by consequence are difficult to access and afford. Equally medication to manage the symptoms, such as the tremors, follow the same trend of not being readily accessible.

Tremors, most commonly of the hands, is a symptom of Parkinson’s Disease

The family came together to support and assist him to continue keeping active, as he loved to take walks. “It is quite depressing when everyone is giving you a diagnosis before you actually get to know what is happening. Knowing that one day you may not be able to move at all is hard. Dad was okay with being helped and that made it easier,” Hellen says with a smile as she reflects on the times she and her brother helped him button his shirts and eat his food. Eventually, the dementia bit caught up with him, the irony being that while referring  to his long-term memory he revealed important things to the family. “My mum told us, you know what, the things this man is saying, we better start paying attention,” which was how they discovered a piece of land belonging to the family in Ngong. Eventually dad got bedridden and mum took the larger role in taking care of him. He died a peaceful death in 2010 on his birthday.

“His life did not just end like that,” Hellen said, proud that his condition led her to create something bigger that the country needed: a place to find support, comfort, acceptance, peace and create awareness. I had the idea in 2007 but I did not know where to start, but when he passed on, and we had to explain to everyone what Parkinson’s is, with some relatives, even the most educated, attributing it to witchcraft, going as far as accusing Hellen’s mother, Hellen knew this was the time to start the foundation. The organisation was officially registered in 2012 and with the help of others has managed to launch support groups in Nairobi, Kisumu town and Mombasa, where the biggest impact was witnessed – people came out and the sharing was powerful.

Hellen’s top tip for caregivers: Share your story, come out! You will empower yourself and empower others when they realise they are not alone in this. We have influential people in this country who are suffering from Parkinson’s; if they came out and shared their story, it would make a big difference, but as it is the larger part of Kenya with Parkinson’s is still silent.