The Family Caregiver – Entangled by Chaos

Written by Cabral Opiyo

When Anyango’s sister, Awuor convulsed and collapsed during playtime forty years ago, Anyango had no idea that she had just witnessed the trajectory her life would take. Awuor was rushed to hospital but it was a remote clinic at best, right from the beginning she never had a chance and her treatment was inadequate at the infancy stage. The illness started manifesting itself in various ways, most profoundly her speech was partially affected and it was downhill from then on, their lives would be intertwined from then on.

Schools around where they lived rejected her sister and the family weren’t well-off enough to find a special school for Awuor and even the few occasions Anyango managed to smuggle her sister into the school weren’t enough. Awuor’s attempts at playing with other children always ended up disastrously because she got irritated quickly and ended up throwing stones at them or caning them. Initially, the state of her sister did not really affect Anyango as she proceeded with her education and lived her life as her mother took care of her ailing sister fully. This was not to last as her mother also got badly ill with high blood pressure and ulcers, recovered, and got a stroke leaving Anyango suddenly as the sole caregiver to two invalid family members and thus begun Anyango’s full-time life as a caregiver.

Then the dominoes really started falling, it is often said that problems come in threes and it was just getting started for Anyango. After fully taking over as her family’s official caregiver, her brother also got cancer of the liver which spread to the lungs in 2014 and that was another burden added onto her already fragile back. She did her best shuttling back and forth between Nakuru and Nairobi to help with his welfare since he did not have an immediate family, meal plans, and taking him to chemotherapy but there was only so much she could do. Unfortunately, his illness overwhelmed him and he passed on the same year, the grief threatened to tear Anyango apart but she could not break, she was still the caregiver to two vulnerable family members who needed her, life had to go on.

A few months later Awuor stopped being mobile and as a result via a combination of that state with bodily hormones became obese. At around the same time, their mum got a second stroke and now Awuor’s carefully fell under Anyango’s purview, there was no one else to take care of her sister but her.

Awuor continued to deteriorate, she got nasty bedsores and finally had to go under the knife for an operation which the doctors said was the only thing that could keep her alive. Her legs twisted, her hands gnarled and turned inwards so she could not hold anything, and finally, she lost her speech so that it was up to Anyango to interpret her signals and assist her in any way she needed.

After the operation, Awuor was fully bed-ridden and Anyango’s descent into chaos began in earnest. She was responsible for everything her sister did; Awuor was on a catheter full time and Anyango had to lift her, bathe her, feed her, make sure she took her various medicines, take her to bed and ensure she was comfortable while turning her after every two hours throughout the night and finally putting her on a wheelchair and taking her outside to catch a few rays of the sun during the day. It didn’t stop there; since Anyango lives far from her siblings and support structure, she was also the one to rush her sister to the hospital whenever her condition worsened and find specialist equipment that cost money like ripple mattresses that helped prevent bedsores.

Anyango has her own family, two children, and a career that she has to sustain in order to support her sister whose expenses cannot be approximated because they vary from day to day but include a lot of miscellaneous expenses. Her day begins at the break of dawn as she purchases and blends fruits for her sister and she makes sure that by the time she leaves the house she has laid out all the food that Awuor will consume throughout the day. Most days she can’t find a reliable enough caregiver to take care of her sister and so she is forced to stay home and take care of her sister.

“She says a few words like ‘mama’ and ‘baba’ but otherwise she can’t articulate her needs at all and I have to interpret how she feels, what she wants, and what’s troubling her. So at times, we get it wrong because we do what we call treatment by assumption because you cannot be one hundred percent sure you’re treating the right thing without her telling you,” Anyango explains, exhaustion evident in her voice.

Once Anyango was away running errands in town and the caregiver she had assigned to take care of her sister called to report that she had a nasty fever, they gave her malarial tablets and waited to see if it would abate. That night as Anyango lay asleep, she says that she had the most vivid dream and she remembers all the details clearly. Her bedridden sister walked into her room holding her catheter, stood by the window, and instructed her to take the catheter to the doctor. It was a weird and chilling dream but Anyango did not entirely disregard it.

In the morning, her sister’s condition had deteriorated, her fever had worsened and she was restless. Apparently, the caregiver had not checked her sister’s catheter an almost fatal decision, Anyango almost missed it as well but remembering her dream, she checked it and found blood in her sister’s urine which set alarm bells in her head ringing. When they went to the hospital and she showed the doctor the catheter is when they realized that they had been treating the wrong thing, it was not Malaria but rather a bladder infection.

Another time, her sister’s blood pressure had spiked to dangerous levels of above two hundred, her eyes were twitching and she was constantly crying but Anyango did not realize immediately what was wrong but she knew that her sister was in distress, she had never felt so helpless until that moment. Only later was it revealed that she was having crippling headaches with no way to communicate what she was feeling.

Even apart from the difficulty in communication, there are various other problems that Anyango faces in her day-to-day caregiving of her sister. The attendants she occasionally finds to help out when she’s not around do not take care of her sister the way she wants and there have been accidents because of negligence; once her sister lost two teeth from a fall because an attendant placed her too near the edge of the bed and she fell on her face. Another time, she wasn’t turned often enough through the night, the bedsores developed into wounds, and sepsis set in after her temperature shot up to dangerous levels.

During the Covid-19 pandemic, whenever her sister took ill she couldn’t move around freely to take her to hospital and she had to obtain a permission slip allowing her to move around without getting harassed. Even when she got to the hospitals, some refused to admit her sister and she had to rush to the next hospital while literally begging for a bed for the night just so her sister wouldn’t die on her.

It hasn’t always been doom and gloom for Anyango and her sister, she says that even after her mental faculties regressed there were funny and genuinely happy moments. People living with special needs often get attached to objects that give them comfort and in Awuor’s case, it was a stick that she took everywhere with her, from herding to traveling. Once when her sister and mother had come to visit her, her mum threw away the stick and all hell broke loose, Awuor was restless all through until Anyango found her a new but similar looking stick.

Anyango is exhausted, nay she is fatigued and overwhelmed but there is no one coming to save her, this is her life now and since her elderly mother who turns 92 this year also became bedridden she has never had a break because there is no one to take over taking care of her sister who is fully dependent on her. Most days she only has one meal a day, she simply has no time for herself or her family, the whole household understands that resources and time are dedicated to taking care of their ill relative.

Last Christmas, her sister was in terrible pain and the bedsores had spread all over and still, hospitals hesitated to admit her sister without a substantial fee in advance. While others were celebrating the holidays she was worried sat at her sister’s bedside willing her to stay alive after a skin graft was done. Anyango’s chaotic life is several years old now and she doesn’t know how long she can hold on. In part two of this three-part series, she tells me how her personal and family life has been affected by her life as a caregiver. Chaos is the only staple in Anyango’s household at the moment.

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