Can Men Be Caregivers? -The Unsung Hero

Innocent’s Story Part 1 Written by Cabral Opiyo

Men Can Be Caregivers

Men can and are Caregivers. Almost half the people who care for an elderly, disabled, or chronically ill family member or friend are men. Although they face stresses that are similar to those faced by their female counterparts, the way they cope is different from women. The story told here is of one such caregiver in Kenya.

Innocent (his real name) is your run-of-the-mill Kenyan citizen, forty-seven years old and doing his best to survive in a difficult economy, at least that’s what he will tell you. Except the more you get to know of his life story, the more extraordinary Innocent will become in your eyes, his life story is one of tragedy, pitfalls, and woe on one side coupled with determination, resilience, and kindness to strangers on the flip-side. In this caregiver story, we tell of Innocent’s life of caregiving to a community while himself living with cancer. Exemplified by his life experience, we shall see the following

• The roles of a community cancer caregiver
• Achievements by a community cancer caregiver
• The personal cost of living with Cancer and
• Self-Care tips for male caregivers

The Birth of a Cancer Carer

A cancer carer is anyone who gives any unpaid help and support to someone with cancer who could not manage without your help. This includes a partner, family member, friend, or neighbor. Very often such carers do not see themselves as a carer. They think they are just helping out. This is the situation that Innocent found himself in. As far as he knew back then, he was only helping a friend out.

In 1999 Innocent was diagnosed with a ‘blood disease’, that’s the information the doctors gave to him and who was he to argue with them? No one ever gave him a straight answer and so he lived on not knowing what was really wrong with him. He was given various medicines to deal with his condition but the aches and ailments never really went away and he says today that his experience with his own illness is a big part of why he does what he does today. Innocent is sort of a community caregiver, he does not only take care of a single patient, he takes care of a whole community.

But first, the origin of Innocent’s first brush with caregiving. From 1999-2008, he lived with his condition often blacking out only to wake up in hospital not knowing what had transpired until later in 2008 when he transferred from Mombasa to Nairobi for further extensive treatment. He had nowhere to go and a friend, John took him in. John was severely ill, he had been diagnosed with cancer, and without meaning to, Innocent took over his caregiving and his life has never been the same again.

While dealing with his own illness, Innocent took care of all his friends’ basic needs and was exposed to a community of other caregivers and people suffering from cancer. It was also during this time that Innocent was finally given a complete diagnosis on his own disease and he could finally put a name to it, he had blood cancer and he was started on treatment immediately with the doctors not knowing how he had stayed alive so long with the condition. The treatment was expensive and Innocent did not earn enough money to cover the various arising costs. Just when he had started despairing, according to his own words a miracle occurred, and a stranger, a woman he did not know but had only met via the networks he had formed decided to pay his medical bills, full coverage at that too.

The Roles of a Community Caregiver

The woman’s generosity inspired Innocent to a lifetime of caregiving and helping strangers who did not know him at all. John, Innocent’s friend towards the end of his life once told him, “Without you, I would have died five years ago.” Words that struck a deep chord in Innocent who had finally found his destiny, helping other people. His friend passed on a few short months later and Innocent started his caregiving ministry in earnest.

Back in his village in Bungoma (Western Kenya), Innocent visits various people who are ill and try to comfort them and help them with further information that they might need on their conditions. He says it candidly, “in the village, ignorance is killing more people than any disease, because the villagers are burdened by misinformation, cultural taboos, and stigma.”

The determined Innocent seeks to dispel myths and help people in his village to get proper medical care often having to convince hordes of disbelieving family members that their kin’s illness could be solved by a simple visit to the hospital. He gives examples of various cases he has dealt with and cases that are indeed baffling.

He gives me an example of a case where a woman had an enormous tumor on her head and her family had been advised that she should go for surgery but the woman had refused. She claimed that no one had ever gone for surgery and come back alive, so she would rather live with her affliction than go for surgery. Her face was too heavy to lift, she couldn’t breathe through her nose, she couldn’t walk or shower or take care of herself in any way, and was in immense pain but she studiously refused any medical intervention until Innocent intervened with common sense and more information.

Another young man had a hernia and had surgery done in Uganda but it was botched badly and several complications ensued. Even the corrective surgery in Bungoma was done badly and when Innocent finally got to see him, his stomach was a meshwork of cross-cuts and he used a stomach bag to relieve himself because his intestines were basically hanging out. It had been five years since those surgeries and he lived a painful life. Innocent tried to convince his family that it was time he went to the hospital, even if it was just for a check-up and just to confirm that the man’s condition wasn’t normal, he consulted with a storied doctor in Nairobi who advised that the young man could live a normal life with proper corrective surgery.

The last example Innocent gives was of a man who had cancer and was undergoing chemotherapy where he lost all of his hair and his family was convinced that it was due to witchcraft. Innocent slowly educated them on the reason for hair loss and even showed them cases of other patients with the same outcome and they slowly came around to his way of thinking and accepted their kin. He supported them in different ways, educating them on diet and other forms of care and the patient’s hair is actually growing back.

It had been whispered by villagers that Innocent’s days were numbered as he was teaching them about cancer and its effects. Some even asked whether he belonged to his family when he told them he had cancer because no one else in his family had it, he had a hard time convincing people that it was not genetic but Innocent is nothing if not determined that people will have the right information.

Achievements of a Community Cancer Carer

Innocent is a knowledgeable man and he has even gone as far as advising villagers to get their cows vaccinated and how to handle milk extracted from cattle. This observation came after realizing how ill villagers became after drinking untreated milk and contracting Brucellosis, he has stopped a lot of cases by spreading the message of how it’s contracted and how to avoid contracting it.

Innocent has identified the gaps in knowledge in the community and he does his best to spread knowledge on various illnesses especially cancer and more people are listening to his message. Innocent has taken his activism a step further and in collaboration with the relevant authorities, he addresses the village on terminal illnesses and cancer, its effects, symptoms, and how to live with it, further simplifying it and demystifying some of the myths around it. Community awareness is Innocent’s passion but there are several obstacles siting that at times it comes from religion and that pastors have bigger audiences than medical practitioners and one even went as far as stating that ‘our bodies are God’s dwellings and sicknesses are curses’. It becomes almost impossible to convince sick patients that they need medical intervention instead of waiting for healing.  

“The four main causes of misinformation in the village are; illiteracy, cultural taboos, superstition and unnecessary stigmatization.”

Personal Cost of Living with Cancer

Innocent used to work in as a security guard in Nairobi but during the COVID 19 pandemic he lost his job and he had to relocate back home to his village. He had increasingly been thinking about taking early retirement so he could take care of his health and help educate people back home. Somehow the management got wind of his intentions and he was fired before he could put it through the proper channels. He still has his medication to take care of and is struggling badly, he still takes his medication daily after meals if he can afford the monthly batch and does cell-targeted therapy instead of chemotherapy but things are difficult.

As part of the side-effects of his taking various medications; his skin has lightened considerably, his nails grow crooked, he has incessant bleeding teeth, his hair doesn’t grow much and he has very short-term memory, often forgetting to do the most basic tasks except taking his medicines for which he has an alarm, he can’t afford to get extremely unwell again. He is the only breadwinner in his family and has had to educate his siblings and children necessitating the quiet sale of his assets to make sure he fulfills his obligations without worrying his dependants.

The appointments for check-ups bring him headaches these days because he can’t afford the USD 45.00 fee which has been doubled during the COVID 19 pandemic. This is excluding variables like transportation and the oncologist’s tests which need to be done every six months, he hasn’t done them in a while, he simply can’t afford to. At times he shares doses of medicine with friends who know of the burden of not being able to afford medication, they slip him a few pills and go without. When I ask him how he copes with so much responsibility and tragedy, he answers with a chuckle that he has no time to sympathize with himself too much, he does what he needs to and that’s the best he can do.

Although, the self-effacing Innocent plows on with his job helping families become better caregivers to their ill family members, he places himself at risk of extreme burnout that could lead to Compassion Fatigue. This is a condition characterized by emotional and physical exhaustion leading to a diminished ability to empathize or feel compassion for others. It is often described as the negative cost of caring. These are some tips that could help Innocent and other caregivers better cope with the realities and stresses of that come with the role of caring.

.1. Realize you cannot “fix” everything

2. Allow others to help you

3. Explore community resources

4. Allow yourself social support – find time for friends, or a support group

Innocent is doing his bit by using his knowledge to chip away at illiteracy and breaking cultural superstitions just to make sure his village people know of their medical options. In his own little way, Innocent is making a huge difference and touching people’s lives, as a change-bringer, he is an unsung hero!