She was dying

When I walked through the entrance of the ward, my eyes searched for her, you can never miss her in a crowed because she always stood out, no matter how crowded. You could never miss her with her huge personality. She would either be giving orders or advice with her vast experience of human nature and wisdom gathered throughout her life’s journeys. But when I walked in, all my eyes met were a tiny woman, a smallest version of her. She looked exhausted, wary and in so much pain. Her glorious mane of curly silver-grey was gone, she was almost bold and her ears stood out on either side of her bony facial structure. Her eyes were glassy with tears that seemed to settle themselves in the deep of her eyes.

Her eyes would usually flutter brightly like daylight but right now they seem dull, those light brown pupils of hers are dark. How did they change color? Is it pain or sadness that changed the color of her eyes? Our eyes meet and lock and as I look deep, deep into hers, I see her soul. She was sitting on the bed with her legs hanging down on the side of the bed. She was wearing her pink fleece gown. It looked like a blanket draped over her as it seemed much bigger than I remembered. She is silent. I walk slowly towards her and hug her. She is so thin. I have never seen her look like this in my entire life. What I hug are bones. Tears stream out of my eyes. I have no words. What does one say in a moment like this?

The thoughts run wild and crash into each other in my as I try to understand the situation. She speaks with my aunt, her namesake, who also drove from Otjiwarango to come see her. Her voice is very frail and soft. She speaks as if it demands too much energy to form and spit out words. Now I realize that the pajamas that I bought wouldn’t fit her as they are actually five times bigger than her. My heart is breaking. She and I haven’t spoken to each other for over a year. I tried several times after I returned to Windhoek after I gave birth to Jayden to talk to her but she dismissed me and eventually I gave up. I get it, she was upset with me for getting pregnant and choosing to go and live with my daughter’s father and disregarding her word. But what was I supposed to do? We were so in love and besides I was still studying and not returning to school would mean that my studies would be frozen for two years and I couldn’t let that happen. I believed that the choices I made at that time were right for me and my children because when I got a job I took Uno to go stay with me. She didn’t say a word to me and I just sat there with my thoughts and looking at everybody that tried to make conversation. She ignored me totally.

Before the visiting time was over a nurse walked in and said the family members should always ensure that the patient’s bed had a clean sheet and some linen savers. She said that the nurses do not do that anymore. She then hand over to me the two clean bed sheets and few liner savers to put on her bed. I turned to my aunt with a question mark clearly on my face. My aunt seemed to read my question and said to me, “Your mom is too weak to do anything for herself and we should help her do everything possible.” It dawned to me then what she meant.

I quickly got up and inspect her bed and clothes. The bed was fine but I helped her change into clean pajamas and emptied the toilet bucket put next to her bed. I then packed out the food that I brought into the bedside cabinet. I put some water, juice and milk close to her reach. The nurse came back to tell us that the visiting time was over and she needed to administer evening medication and that all visitors should vacate. I asked the nurse what time morning visits start seeing as my mom couldn’t take care of herself and would need someone to be there early as possible to assist her. I was told that the patient wards are opened from 6am and that I would be let in if I tell them that I am going to change the bed of my mom.

The following morning, I woke at 5am to get ready and prepared some soft porridge to take along to the hospital. The hospital was very far, about 2 kilometers walk from my aunt’s house and I had to finish quickly being there on time when they open the wards.

When I got to the wards a friendly older nurse asked me who I wanted to see and when I said my mother’s name she let me in. She didn’t seem happy to see me but I could see that she was in great pain and was coughing too much. I helped her to sit up while I was getting a bucket of water for her bath. The bed needed clean sheets and she needed clean clothes. After the bath and bed was fresh, I offered her the porridge I brought but he refused to eat. I tried forcing, thinking that she only refused because it was coming from me. But she told me that the meds gave food a bad taste and she didn’t enjoy the food. I have decided to spice it up for her by adding some meaty snacks that I know she would like when I return again. She was too weak to even sit up so she had to lie down.

I returned with some chips and Russian, fruit, chocolates, yoghurt and sweets. She tried to eat a bit. Her throat was painful because of infection and she couldn’t swallow properly. So the Ensure milk did wonders. I got a 250g can of Ensure milk for N$150 in Spar in Otjiwarango. This can only last for 2 days because it was the only meal that she could take all day. My daily routine was to wake up early and make a nice bacon and egg with cheese sandwich and pack whatever else would be needed and take a walk to the hospital, return a couple of times during the day because I still had to take care of the kids at home. Richard was only six months old while Jayden was 2 and half years. Uno was 10 years. I was still breast feeding Richard.

When my mom built a bit of strength I carried her to the bathroom for showers. One morning after the shower she asked to be put on the scale to check her weight. I almost fell with her while trying to balance her. A nurse came by to give a hand and looked at me with pitiful expression and said to me, “Poor girl, look at you, you are only taking care of your mom but you are not looking after yourself. Come let me hold your mom and you get on the scale.” I hesitated and did as she said. I couldn’t believe when I saw that I weight 47km at the age of 30, just a few more than what my mother weight at that time.

The hospital became my second home as I followed the daily routine of taking care of my mom, washing and feeding her then go home when she would take a nap to check up on the kids. Sometimes I would take the kids along but they weren’t allowed to enter the TB ward in which my mother was admitted. Most of the day, I was able to keep my emotions in control but at night when I was at home with the kids, I let it all go. It was hard enough to watch the bony figure of my mother all day and to pretend to be strong while deciphering and coming to terms with her dying. She got a bit stronger and she could at times go to the bathroom herself, even though she had to support herself against the walls for strength not to fall. She didn’t like being helpless because all her life she had been a strong woman who took care of everybody and she was often frustrated by the condition in which she had to depend on another person for everything.

Some days I would walk into the ward and find her bed empty and just froze in my tracks as my heart would skip several beats. The first time it happened, I slowly moved my eyes around the ward where there were a few other patients that shared the room with her. I did notice that some patient I had become accustomed to finding in the ward that my mother was in would no longer be there the next time I would go there and the nurse would respond to the my unspoken question as if she could read my mind. “That one left us late last night,” she would say as if it was the most normal thing to happen. The first thing that came to my mind when I found my mom’s bed empty was that she left us. The old lady closest to my mother’s bed said, “ uri mo karuoo.”

I quickly turned around and stormed to the toilet where I found her struggling to get up. I helped her clean up and took her back to the room. I didn’t realize then that my face was wet from tears. It was tears of fear of losing her just yet and of relief that she was still there, all at the same time.

As the days went by, I became a resident at the hospital because I would get there at 6am and only leave around 9pm. I was exhausted, more emotionally than physically. I hardly had some sleep because at night while minding my baby, the fear of falling asleep and be woken with the news that she left while was taking a nap kept me awake. Plus, sleep was just not easily conceivable because all sorts of emotions and thoughts that ran through my mind kept me from sleeping. At night was the only time I had to experience my true feelings. It was the only time that nobody was watching that I could exhale. The wee hours of the night when I would lie awake was the only time I had to allow my tears to flow freely and mourn for my dying mother on my own. I didn’t know if I should prepare myself for her passing or if I should pray for God to let her live. It was a battle of a child crying out for her mother’s life to be spared while reasoning with reality. Watching her in being in so much pain and agony and how frail she looked as the life she once carried so proudly and confidently slowly disappearing from her was a painful sight.

I had to be strong at all times. I wasn’t allowed to ask questions. I wasn’t allowed to weep for a mother that was dying. One day was worse than the other and every minute was a waiting period of even worse news to come. The mere production of the thought that she was dying yield so much pain that I wasn’t prepared to deal with. I didn’t think of myself at that moment. I obviously didn’t get enough sleep and I hardly ate as I didn’t have appetite. I was losing weight and dark rings formed around my eyes. The ensure milk with all its nutrition was the magic powder that mom needed more than the medication that further broke down her already weak body. Slowly I started noticing the improvements, she was able to sit up straight without any help and soon she could get out of bed, with help and was able to go to the bathroom. She was improving but she was still coughing terribly bad and couldn’t eat solids well. However, the day has come that she could be send home to continue with medication at home in the care of the relatives. I couldn’t thank God enough. I was so excited at this news and I went home and prepared a room for her. I wanted her to be comfortable as much as possible. Before she left the hospital, a few blood samples were drawn to be sending in to the lab. During those years the blood test results were only received after two weeks, so I wasn’t really worried.

My son got sick. Actually I didn’t think that it was anything serious. He had pain in the right shoulder. It was slightly swollen and I took him for x-rays, which determined that his shoulder was dislocated. Probably because of rough games he and the cousins played when no adult was supervising. He seemed fine after the physiotherapist has done his magic to push the shoulder back into place. My brother decided to take all the kids to the farm before my mom was discharged the following day, so that they wouldn’t be noisy around the house because she would need to rest in the quiet home.

It was a week before the school reopens and I was glad that my brother took the kids along so that I had all my time to take care of mom at home before I would leave. It was just the day after my brother left with the kids that he called with the news that my son woke up with the same dislocated shoulder the following day but this time with unbearable pain. My brother’s farm is closer to Okahandja and he took him to the hospital there. The diagnosis was the same and they had to admit him to observe him overnight. My brother asked the hospital to rather transfer him to the hospital in Okakarara where I was with my mom. My son got admitted in the children’s ward at the Okakarara’s hospital the following day. My son’s condition was much worse than the previous time I took him to the doctor and this time the right shoulder was hanging down over the ribs and the right leg was dragging making walking difficult. The doctors couldn’t tell what exactly was wrong with him and I had to stay in the hospital with him because his condition got worse with every passing day. After just a few days, my son was unable to stand straight and I had to do everything for him; carry him to the bathroom, feeding and bathing him. There was a single couch put next to his bed which became my bed.

Now, I had two patients to take care of, mom and my son. Luckily, mom was at home and my aunt could assist in my absence. At the end of the week I asked the doctor if my son could be transferred to hospital in Windhoek because it was end of the school holidays and we had to return home anyway. I knew that I wouldn’t be able to go to work with my son being in hospital but at least I would be home. My mom was improving and I was happy to leave her in the care of my aunt, her younger sister. In Windhoek, my son and I spent a whole day in doctor’s examination room with several tests done and blood drawn to determine what was wrong with him. It was after 8pm that day that he was admitted to the children’s ward which was on the 3rd floor of Katutura hospital. I was hungry and exhausted. Again, the couch beside my son’s bed became my bed. The following day, a doctor came to tell me that the test results determined that my son had osteomyelitis and that a surgery was required as part of the treatment but there was no guarantee that it would solve the problem right away. In severe or chronic conditions it can even lead to amputation of limbs. This was so scary to me. I couldn’t control my tears from falling but nonetheless, I needed to know more about this disease that I hear about for the first time. He continued to explain, “Osteomyelitis is inflammation or swelling that occurs in the bone. It can result from an infection somewhere else in the body that has spread to the bone, or it can start in the bone — often as a result of an injury. Osteomyelitis is more common in younger children (five and under) but can happen at any age.” Uno was 10 years old then. This news was devastating. The doctor asked me to take a walk with him through the hallway, which was now crowded with kids with different conditions. Some kids had burn wounds; others were pushing an IV stand while some didn’t have both legs and several limbs. It was not easy looking at these kids but most of them had happy smiling faces and playing like nothing even matters. Some played with board games, other were building with Legos while some were willingly pushing around patients in their wheelchairs. My eyes were teary just by looking at the scene in front of me. The doctor said to me, “You’ll have to be strong now for your son.” He then stopped next to a boy whose toes on one foot were amputated and one leg on the other side was cut off up to a little above the knee. He was seated on the floor. I could see that he was about the same age as Uno. The doctor said, “Alfred came to the hospital three years ago. He was diagnosed with osteomyelitis, has undergone several surgeries. He lost a few limbs and is scheduled for another operation due next week.” He explained that some kids heal after one operation but some need several surgeries. He said I should be prepared that it could be the case with my son and a possibility is that he may never be able to walk again. “Oh God,” I cried out. “First my mother, now it’s my son.” My mind couldn’t decipher what was happening.

A week after that day, Uno went into a surgery, it was successful and a month after surgery he was discharged. I didn’t see my mom all this time but we spoke over the phone. Just a week after my return at work, I received a phone call from my aunt saying that my mom’s condition deteriorated and that I must go see her urgently. I put in leave and rushed over to Okakarara. My mom was in bad shape but not much worse from the last time I’ve seen her. I could see that she was battling psychological effects if the condition in which she was.

The next day after I arrived in Okakarara my aunt called me into my mother’s bedroom and let me sit down on the bed. She then looked at my mom and nods her head encouragingly. I was a little puzzled and turned around to look at my mom. Her eyes glance quickly at both of us and went down to where her hands lay above the blanket, fingers intertwined. Her knuckles were pale because of how tightly clenched the hands were. I could sense some tension. After about a whole minute, a sigh that mom released filled the silence in the room. I was scared; my hands started sweating and my stomach tight into a knot. I looked at my aunt but her head was down and I couldn’t see her eyes. So I turned around and looked at my mom. She started speaking, “Before I left the hospital, some blood samples were taken to be tested and the result came out.” My chest started tightening and I started to breathe heavily. Is it cancer? That was the question in my head.

“I am HIV positive…” mom said with her last word barely audible. Tears slowly rolled down her cheeks. I quickly moved forward and took her hands in mine. “Ma, you being HIV positive does not change anything. You are still my mom and I love you. We are going to learn everything there is to know and I am going to take care of you. You should be ARV treatment.” All the fear I felt before the news just disappeared and I was calm. She looked up and while wiping her eyes, she said that she was already given the SRV medication. They also did a CD4 count, which was below 200. For the first time since she got sick, I looked at her differently. At first I thought that it was only TB because she was admitted in a TB ward. She was coughing heavily. But now that I heard what her real diagnosis was, I could understand why she looked the way she did. I went closer and gave her a hug. The medication was too strong for her and it made her vomit and ran her tummy. She has even lost more weight than before I left. She was much weaker now. Someone had to take her to the bathroom as she couldn’t walk by herself. At least she could sit up in the bed. Sometimes, I would take her to the living room and put her in a couch while I was cleaning her room, turn the mattress around and change her sheets. She enjoyed that moment because she could watch and talk to her grandchildren, whom she otherwise wouldn’t see because my aunt would not let my kids into my mom’s room nor were they allowed to touch her.

I did not know about this but when I was alone with her in the bedroom preparing her for a bath, she said, “Thank you for allowing me around your kids because ever since you left, they were not allowed near me.” My heart broke into million pieces. The misconceptions people have about HIV and the damage it caused. My aunt obviously had little knowledge about HIV that she assumed that being close to an HIV positive person or even sharing stuff with them would spread the infection. I also did not have much knowledge about the HIV/AIDS virus but I knew enough to start educating her with the basics that she needed to know about her condition. My mother was not given any counselling and therefore believed that she was dying.

I went to the hospital to collect every leaflet and brochure I could lay my hands on about HIV and AIDS and read them until I understood. I then sat with my mom and started teaching her. She have learnt enough to know and understand about stigmatization and rejection because that was how she felt living with my aunt. She then requested to be taken to my brother’s farm. I went with her to the farm. I spent one week taking care of her. The medication was still overpowering her and some days she was so depressed and hardly spoke to anyone and refused to eat. It was hard to convince her to eat. Aunty Sara is my dad’s sister who has been a nurse. She came to visit mom and to convince her to go stay with her in Swakopmund where she could nurse and take care of her as I could no longer stay away from work.

Aunty Sara took my mom with her and helped her come to terms with her condition. She fed her with all needed nutrition to strengthen her immune system. Slowly she regained her strength as her CD4 count improved. She gained weight and was able to maneuver herself around the house without any assistance. She accepted her fate and started living a much healthier and happier life with anticipation for better and improved health. Mom continued taking her ARV medication as her body adapted to the side effects of the medicine and she was coping much better. Soon she was ready to return home. She has decided to disclose her status to the family members. I have been obsessed with learning all that I could possibly know about HIV/AIDS and have never looked back since then. My mother has since never been admitted to hospital due to ill-health or HIV related illness. She has been as healthy as a fish. Mom is now living a healthy life and it’s been 16 years since she was diagnosed with HIV in 2006. Watching my mom through her illness let me make a promise to myself to take care of myself not to deliberately expose myself to HIV by living recklessly. It was not only a promise that I made to myself but my mom made me promise that I should take care of myself. HIV has thus become an ordinary topic in our household, we joke about it and we can talk openly about it. That’s what my mom wanted us to do. As our kids have grown older to understand life, my siblings and I told our kids about their grandmother’s condition. She asked us to do it. The kids have taken it well and everybody loves their grandmother to the moon and back.

My mother is now 75 year old and I am grateful to have a mother like her. She is a mother of many, a nurturer who is selfless to her own detriment sometimes but that is just who she is. I celebrate her life every other day as well as on Mothers’ Day and her birthdays. I always make sure that she knows how much I appreciate her ?