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When my brother, Grisholm Keyes, started to develop brown and purple spots on his facial skin in June 2016, I never thought much of it. When his colleagues at work started discussing his facial patches, lesions, and plaques, my brother smiled and dismissed it as a harmless skin infection that would disappear in no time.
My brother worked as a pizza delivery driver and I was worried his reddening skin would make the restaurant owner fire him.
But when the lesions started developing on his legs and groin area and led to painful swellings on his arms and feet, my brother, now alarmed, asked me to book for an emergency visitation. Our best option was the Texas Cancer Clinic, outside Nairobi.
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At that time, I had been working at the Clinic as a caregiver for about six months, caring for cancer patients. My sister had also worked there as a nurse so we felt fortunate and blessed because we knew he was going to get the best care possible.
Before starting to work for Texas Clinic, I had not been directly impacted by cancer, but during my first 3 months, I witnessed three of my close family friends diagnosed with pancreatic, papillomavirus and breast cancers within three months.
When Dr. Larry Maloba tested my brother, he was diagnosed with cancer called Kaposi Sarcoma. When the doctor pulled us aside, he explained that the cancer was in an advanced stage and had completely infected his gastrointestinal tract, all through the stomach and intestines. Without blinking an eye-lid, he told us to invest in hope, which in our estimation, was polite lingo to expect the worst.
That the tumors manifest themselves as red patches or nodules on the skin and can attack internal organs like the lungs.
The disease is more common in men and in patients with problematic immune systems. Dr. Maloba explained that people with AIDS are at a higher risk of getting KS because the virus attacks their immune system, leaving them unable to fight off other diseases. The verdict: My brother had terminal cancer and needed urgent palliative care.
During the 1980s and early 1990s in the U.S KS became synonymous with HIV-related infections but has since become rare as antiretroviral drugs have kept HIV in check.
This, unfortunately, is not the case in Kenya where despite gains made in increasing government-sponsored ARV medication to HIV patients, only about half of the patients receive it due to endemic corruption in hospitals and many starts in later stages after diagnosis than those in the U.S. And chances are the patients don’t stay on the regime.
Primary Caregiver
When all tests were positive that my brother had KS, and with no extra bed at the Clinic to admit him, Dr. Maloba appointed me the primary caregiver and advised that the best chance for recuperation was at home. And with the clinic undergoing a severe drug shortage, he prescribed some medication and bid us farewell.
During the trip home, in the taxi, my brother wept uncontrollably.
At home, a medium-sized room was hastily furnished, with a bed, a wheelchair and a few items of clothing.
It took excruciating patience to learn to bath my brother, groom and dress him. It was also agonizing to clean the lesions, feed him and brush his teeth.
The role of a caregiver is complex, but I was tasked with organizing shopping for my brothers medical and food supplies, administering medication, pushing his wheelchair, providing companionship, driving him to medical appointments, running his personal errands and taking care of his toilet. It took enormous patience to change his soiled sheets each day.
Being his caregiver was difficult because I felt powerless. I found caregiving an emotional experience that only the most empathetic human being could tolerate. Many emotions surfaced as I had no prior training about the job. I experienced anger, stress, bitterness, and hopelessness.
I concealed my suffering well. I received little comfort from leaning on my relatives for support. They assumed I was strong and motivated and capable so I could handle any trauma.
At first, I experienced many negative feelings and often set out saying: “This is not happening to me. What if he does not recover?”
I love my brother, like the rest of my family, but the negative emotions I worked hard to bury or pretend aren’t there often erupted and I locked myself inside the bathroom and shouted in anger. Often hiding these outbursts from other members of my family for fear I would be judged negatively.
Transform my Misery into Joy
As time went on, resentment set in. I felt the worst resentment when I was involved in his trips to the shower and toilet. I had serious misgivings using a towel to dry a grown man and getting entangled in his toilet.
I immediately resolved that rather than feel in the dump most days, it was time to transform my misery into joy.
The first thing I did was to admit that I was hurting inside. I learned that feelings of hurt and grief were common to all caregivers. Many people think that grief only comes after the passing of a loved one. But the truth is when a loved one’s health starts to deteriorate, the whole family suffers. If a hardworking breadwinner is involved in an auto accident and is confined to a wheelchair, it means loss of the bread and affects the entire family.
I desperately wanted to heal and find joy again. I wanted to speak to other caregivers but the Nairobi cancer demographic is not as developed as the U.S or Europe.
Only clusters of isolated caregivers in major hospitals who are difficult to socialize with. I wanted to find a caregiver group to share experiences and understand what I was going through.
My big break came while attending a cancer therapy seminar hosted by an International medical NGO in one of the Nairobi hotels. The gathering included cancer caregivers from leading hospitals in Kenya. As we got introduced during the coffee break, I sensed a keen desire and urgency to get to know each other better, and the idea of a Whattsap Group was born.
Eventually while going home after work with we started an informal meetings at popular coffee houses and a small Facebook and WhatsApp group was formed.
This support group turned out to be a major resource for caregiving solutions that made my life far much easier. The caregiver group turned out to be an important avenue to seek help, channel frustrations, and other troubles. I found out that many caregivers would love to help. Only that they don’t know how.
I learned in the group that I did not need to spend my entire time nursing my brother. That there were homes and shelters in Kenya where my brother can rest for a day under qualified cancer personnel. A good example is the Nairobi Hospice, where I learned my first lessons about palliative care.
And that when I took a rest and a day off, I actually became a better caregiver. After all, who wants a stressed frustrated caregiver caring for them?
My brother, who is an avid reader introduced me to books and music. I had trouble penetrating his Penguin Classics initially, but in time found great joy analyzing Shakespeare animatedly as I sat next to him and as I waited to devour other authors he had read such as Balzac and Dostoyevsky. I also enjoyed listening to classical music which I previously couldn’t stand.
When colleagues from his former pizza cafe decided to make weekly visit bearing packages of pizza, I was overwhelmed with feelings of joy and gratitude. They brought humor and laughter,which greatly help alleviate my misery. There was always a cheerful mood every time they left.
