Chaos Theory

Part 2 of Anyango’s story

Written by Cabral Opiyo

No one is really born to caregiving, most stumble upon it when they are forced to take care of loved ones mostly due to being unable to afford a professional or as the only person in the family capable of taking on the often heavy burden of caregiving. Anyango falls in both camps, fate had thrust upon her the job of being a caregiver to three family members in a short span of time, while others would call it a burden, she got on with the work that needed doing. This is the account of how a lifetime of being a caregiver has affected Anyango physically, emotionally, and mentally, this is her story of suffering alongside her patients and feeling their every pain while nursing her own without complaint.

First, she had to be a caregiver to her brother who was diagnosed with liver cancer that spread to the lungs back in 2014 but lived in Nairobi while she lived in Nakuru. Always the compassionate one, Anyango would put everything aside and commute to be by her brother’s side and assist in any way she could since he did not have an immediate family. Often she would accompany him to his chemotherapy sessions at Mater Hospital, help in planning his diet and medicine regimen, and go back home because her life and her family still waited for her. She did, even more, to take care of her brother than the relatives who lived in the same city as he did, it was just a  naturally accepted truth in the family that Anyango would always step up to the plate and shoulder some of the burdens and she did.

She was almost always fatigued and it affected her health badly, the commuting and stress of her brother’s declining health took their toll on her health. She had high blood pressure and lost an enormous amount of weight, she recalls people asking what was wrong because of her haggard experience but even she hadn’t realized just how much her body was taking a beating from her satellite caregiving and juggling her life at the same time. Much later in her life as a caregiver; she’s had constant headaches and even convulsed prompting admission to hospital for a week all the time worrying about her sister’s welfare back home. She has had Malaria, Anaemia and a meningioma on the left side of her head that requires an operation she hasn’t had yet, there are more pressing issues back home.

And then her mother got badly ill and couldn’t really take care of Anyango’s sister as she used to. The only person who took on the burden of actual caregiving in the family was out for the count and Anyango had to step up fully to taking care of her ill mother and sister whose health continued to deteriorate badly culminating in her being fully bed-ridden and unable to communicate verbally leaving Anyango as her only mouthpiece. The responsibilities kept piling and Anyango kept stepping up, the rest of the family might have been supported financially and occasionally dropped by but it didn’t make much difference to the now permanently exhausted Anyango.

She has tried to get help by hiring helpers to help her take care of her sister Awuor but the challenges far outweigh the benefits. Most times she never finds a helper capable and caring enough to take care of her sister the way she wants it done, they are not as attuned to Awuor’s needs as Anyango is and they can get negligent whenever she isn’t around because Awuor cannot defend herself anyway. If it isn’t that, most just don’t last, only lasting a few weeks before finding the sheer weight of the work too much and as most caregivers will attest to, the work requires someone with a strong constitution because it involves dealing with the most intimate workings of a person’s body including cleaning them up.

Anyango needs to run errands too, she works in busy environments including a private clinic and the meteorological department and she still has to find time in her day to find out how her sister is doing. Her life is basically split between working when she can, mostly having to stay at home when a helper quits or just doesn’t come back from an off day, and taking care of her sister who is fully dependent on her.

Her health is in tatters; she has had a back problem since 2006 that has only gotten worse during her time as a caregiver helping to carry her sister to and from bed, she has developed ulcers because she barely has time during the day to eat and only has one meal a day mostly on the go because she doesn’t have the luxury of time to sit down and just have a normal meal.

Her life is unsettled running up and down, but she also has a family to take care of and this is one area where she acknowledges that her caregiving has had a huge impact on. She can’t remember the last time her whole family sat down as a family to have a meal on the dining table, food is prepared and everyone eats when they can because life in the household is always so topsy turvy.

“I don’t have time with the kids, I’m almost always giving instructions rather than talking and engaging with them like a normal household. Instructions on things to do, which meals I’ve prepared for my sister throughout the day, and such kinds of things.”

Anyango’s first born child is quiet and doesn’t mind just sitting in a room not talking and most times she prefers it that way because she’s so exhausted she can barely concentrate on conversations. The second child though is jovial and talkative and the state of quiet in the house has driven him away, Anyango acknowledges that at times after particularly exhausting and stressful days she would avoid him just so she didn’t have to talk too much. Her avoidance did not go unnoticed though and the gap between them widened so much that he always goes to her sister during the holidays. He even observes that whenever they talk Anyango seems absent-minded most of the time, a casualty of the rigors of caregiving.

It is into this maelstrom that Anyango lives in daily; she has two sisters and a brother having lost two siblings so far but she has been the designated caregiver of the family from time immemorial. It was unanimously decided that their sister should stay with Anyango in Nakuru because it is a cheaper city to live in with a patient than Nairobi and indeed it has proven true because Anyango occasionally gets to take Awuor to the doctors and pays later, they know her and it is a communal city. The others chip in financially but is it enough?

“I once told my siblings not to come to my house, when they come I have to cook and take care of them and I’m already exhausted. They come and see our sister and maybe that day she’s okay, they don’t see all the work going on behind the scenes.”

Anyango laughs when I ask her about relationships, she is currently a divorcee but she hasn’t had any time to dip her toe into the dating pool again. “After the life I have described to you, would you even try to date again?” Anyango asks laughing a sad laugh.

She literally has no time for herself, she doesn’t have a social life neither does she go anywhere she doesn’t need to be. She would most definitely like to get into a relationship again, it is a human need that she cannot afford to indulge though, her life is not her own. Before the caregiving she had hobbies that she enjoyed; dancing, traveling, going out, and cooking. Even as she lists them she sighs heavily, it seems like another lifetime when she enjoyed those things, a life she barely remembers.

Yet even with all the strain she’s going through Anyango still indulges one passion of hers; she visits with the needy of the society, empathizes with them and when she can advocates for them to receive wheelchairs from charity organizations and the government by registering them through APDK. She wishes the government would just take a look at the plight of the needy and differently-abled and assist informal caregivers who have no option but to stay and care for their loved ones often with barely any equipment. Never one to sit by idly, she has taken things into her own hands and started a caregiver’s initiative to embrace informal caregivers.

There are certain qualities over her time as a caregiver that Anyango thinks all caregivers require including: good communication with your patient is a huge deal-breaker, confidence in what you’re doing, efficiency and time management go hand in hand to become a more effective caregiver and finally flexibility because caregiving isn’t straightforward at all. She has learned hard lessons as well including: people should take caregiving more seriously since it is a hard vocation, families should play more of a role physically, emotionally, and mentally in assisting caregivers in their duties because one person cannot do it all alone.

In the future, even if she didn’t have to work or be a caregiver, Anyango would still choose a life of advocacy to help those in need, bring informal caregivers together and help address their issues.

She has her fair share of regrets which she narrates quietly, “I wish my sister had another life, she hasn’t even dated, she hasn’t lived. My mum and sister were inseparable but due to prevailing circumstances they haven’t seen each other since 2017. God has been with me but I am tired, small triggers bring headaches, I was a jovial person but I am going into depression, it’s all too much.”

Attending the workshop on compassion fatigue by Suruvi has helped change her perspective on a lot of things according to Anyango. First she acknowledges that knowing that there are other caregivers going through the same difficulties and climbing over similar obstacles has made her feel much better about her situation and given her a sense of union with other caregivers. It also has had the added benefit of exposing her to a whole new world with a support group of caregivers whom she can vent to, listen to, learn from and share in camaraderie because they understand exactly what she’s going through.

Her methods of dealing with the patients under her care have also been improved and she understands how to handle patients better. Mentally she understands why patients react to certain stimuli and situations the way they do and how to deal with the demands of the job, understand where she lies on the burnout scale and finally how to effectively deal with this situation complete with healthy coping mechanisms.

She says that attending the Suruvi workshop has alleviated a lot of the pressure she has been feeling, she is still exhausted and almost burnt out because at times it’s two steps forward and five back but she recognises the signs and knows how to deal with it, a win in her books. Everything that can go wrong for Anyango has gone wrong, she doesn’t complain but it’s all catching up to her mentally, emotionally and physically, she’s literally standing on the brink.

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