It is disheartening to see someone you love lose their memory and aptitude to do things on their own due to sickness. Stirred by her own anguish, when 71-year-old Helene Nkerenke lost her beloved mother to Alzheimer’s disease in 2016, she decided to write a book to raise awareness on the disease and its effects. 

The book also conveys awareness about the signs of the illness so that it can be identified as soon as possible. Experts say that Alzheimer’s disease is a gradual neurologic disorder that causes the brain to shrink (atrophy) and brain cells to die. The illness is believed to be the most common cause of dementia — an incessant decline in thinking, behavioural and social skills that affect a person’s ability to function independently.

Nkerenke recalls observing her mother’s demeanour change utterly with time; she had started being very clingy, argumentative, abusive, and forgetful. Although it bothered her (Nkerenke), she assumed it was perhaps a result of old age.

Helene Nkerenke, a first-time author. Photos/Joan Mbabazi

"My mother ceased minding about her appearance, I remember a time she went to the garden in her nightdress. She became paranoid, contemplating that people would steal her things, which she hid in places they weren’t supposed to be,” she says emotionally.

She also says that her mother developed insomnia and that she spent so many nights restless and wandering around the house that they had to hide the house keys from her for fear of leaving the house in the middle of the night.   

Being a registered nurse, Nkerenke hadn’t dealt with the condition before and Rwanda, just like many countries in Africa, had inadequate resources to diagnose it.

However, during her nursing training, she was to prepare for a presentation and while carrying out research and gathering information on the topic which was ‘senile dementia’, she noticed some of the signs that her mother showed.  That was the start of her mother’s diagnosis.

Nkerenke explains that Alzheimer’s disease is in seven stages, by the time her mother was diagnosed, she was at stage six, a point where she would refer to a car as a bull—she was in complete mental confusion. 

The first-time author highlights that one of the moments that scared her was when her mother left the house and wandered around Kanombe on her own; they searched for her in vain, and what’s worse, she couldn’t recall where her home was or her relatives.

Luckily, one of the people that offered her shelter that night stumbled upon a Catholic parish receipt that was in her bag, and that’s when they were able to trace her relatives. From that time, Nkerenke realised that her mother required full-time monitoring, just like a baby.

"My mother had the disease for about 20 years, but only lived with it seven years after diagnosis, she died at the age of 96. Unfortunately, the disease has no cure, and affects mostly the elderly who are about 65 years of age and over.”

Nkerenke says that writing her book, "Love to Live & Live to Love, the Frail I Mean”, was to spread awareness about the condition as some of her relatives were clueless about it.

For instance, they mistook it for witchcraft, or possession of demons, and other people perceived it as a result of their ancestors’ anger. 

In her book, she notes, she offers information about the illness so that people can have an understanding about it and also know how to care for their relatives and friends with Alzheimer’s disease.

According to the author, caregivers have to be patient as Alzheimer’s disease patients are not aware that they are doing anything weird, or that they’re wrong, they believe that they’re right.

She adds that they also lose the capacity to learn new things, and the sixth and seventh stages are terrible because the patients forget to swallow food, and may become malnourished because it’s difficult to feed them or convince them to eat.

"Alzheimer’s disease patients accumulate saliva in their mouth that at times they even choke on it. They also get fractures as they’re unable to beckon up a levelled and raised ground which is why they need to be supported while walking,” Nkerenke says.

Some of the nursing care tips she offers in her book are for caregivers to understand that the patients of this disorder don’t intend to do such actions, but need to be handled with love and compassion.

She also adds that they need to be cared for like toddlers, by thinking for them when they need to eat or drink. They also have to be kept clean, and be able to read their body language to tell when they need to use the toilet, or provide them with diapers.  

The author says that Alzheimer’s disease patients require exercise, and that’s why they need to be guided to walk around.

She also points out that the effects this has on the caretaker are overwhelming and stressful as people forfeit their marriages, businesses, school, and other things or duties to provide the undivided attention and necessary care to the patients.

A 1999 study found that caregivers have a 63 per cent higher mortality rate than non-caregivers, and according to Stanford University, 40 per cent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.

After her mother’s diagnosis, Nkerenke decided to ask for an unpaid leave at the hospital where she was working to offer full dedication to her, and so her supervisor allowed her to work for a few hours.

She notes that she gave up on all her social activities and responsibilities and offered all her time to her mother that even when she died, it ‘took her some time to feel that she was free’.

A copy of her book goes for Rwf 8,000 and can be ordered via 0788415750.