Final Visits at Ndolage

Today is September 28 only one week since we left home, yet it seems like a lifetime. We feel very lucky to be back in Mwanza and staying at a hotel with air conditioning, clean bedding, a mosquito net and no howling dogs (at least we hope). As we sat down for dinner tonight at a hibachi restaurant (yes hibachi in Tanzania) a group of four people asked to join us at the table. The group was from Sherman, Connecticut and their children went to New Milford High School. What are the odds of a group from Connecticut being seated next to us at dinner? It is indeed a small world.

Today “Curious George” (as he has been nicknamed by the Ndolage team) was the center of much hilarity. The levity of laughter is a necessary component to the heaviness of our hearts and experiences. Laughter crosses the cultural boundaries as well. George has developed an ability to leap out of the truck when he sees a photo opportunity or a child. Today was no exception, except the truck was still moving. Everyone screamed, but thankfully George was okay.

George also took the liberty to provide a verbal countdown to the departure of our plane as he was most concerned we would not make the flight. Imagine George saying “33 minutes until departure,” “18 minutes to departure,” “4 minutes…” and so on. The fun was not over—when we arrived at the airport and were just about to go through the security screening, George could not find his passport. Susan and I dumped his briefcase on the floor and went through every item one by one. Still no passport. Sheer panic was just setting in, when 15 minutes later, alas the passport was found…in George’s back pocket.

A Whirlwind Day

This day, our last at Ndolage Lutheran Hospital, has been a whirlwind. The day began with another sleepless night from howling “wolves.” I have lost count how many days we have been without sleep.

We started our day visiting a man named Athumen. He is 42 years old, living with his sister in her mud hut. He has end stage AIDS and is suffering from hemiparesis and aphasia. He would nod his head to answer the questions we or the team would ask. He lay on a single bed in a tiny room with hay on the floor. His sister clearly was devoted to ensuring her dying brother was comfortable. The love for him was palpable. She was very concerned that his cd4 blood count had not been taken in a year and therefore they were unaware of the progression of his disease. Sadly, there is no at home lab service like in the USA that can just come to the home and take blood values. Clearly, her brother was nearing the end to his young life and she was grasping at ways she could help him. We all felt her quiet desperation. Melichar, the clinician on the Ndolage team, instructed her how to provide range of motion exercises for her brother. The Ndolage team also provided powdered porridge for nutrition and spoke with him about how to eat well. They gave them a “hospice kit” that included a fluffy bath towel, toothpaste, toothbrush and a meditation book in English. It was really rewarding watching the team provide teachable moments to the sister. It was also sad to see that most people do not have any basic toiletries for caring for themselves.

Some of us walked around outside and viewed the outdoor bathroom that is merely leaves and bamboo on the ground. A young boy, maybe age 5, was walking around, the house. He was filthy with a tattered shirt, ripped shorts and no shoes. He had round circles that looked like blisters on his face and body…it was ringworm.  George immediately gave him silly bands. The boy held his arms out as though he was afraid to move them—he was not sure what these bracelets on his arms would do. We attempted, with the 10 words we know in Swahili, to tell him it was okay.

As we were leaving the house, the sister started to cry. Huge tears rolled down her face and she said in Swahili, that she was desperate. She did not know how she was going to support her brother and herself while she needed to care for him. The grim reality is that she is HIV positive too. She sees firsthand the horrors of this disease and what will eventually become of her. Susan became emotional and gave her a huge hug. We all, in any of these situations, want to be able to provide some glimmer of hope, in the face of utter tragedy.

An Unexpected Encounter

As we were leaving Athumen’s home, George heard noises in the banana trees. All the houses in this area have banana plantations right around them. These trees make the most beautiful noise when they sway…it sounds like the ocean hitting the shore in a soothing and peaceful way. The sound George heard was not that, he heard the sound of a carpenter sanding without equipment. Remember, most huts have no electricity, running water or indoor bathrooms. They look like horse stables, but not the nice kind in Ralph Lauren ads.

Out of nowhere, George stumbled upon a craftsman making wheel barrows. The man made them all by hand, carving each one carefully and selling them at the market.

As we drove away, down the narrow path, we passed a herd of cows. All the cows here are very thin. You can see their bones through their skin. George waved at a calf, as he had all the children (like a pied piper). The calf left its mother and started leaping and jumping in the air and ran after the truck for at least a mile. We were all laughing that George even had this effect on cows.

Hospital Meeting

The day continued with a meeting at the hospital to discuss plans for the future and challenges that we identified in providing palliative care, acknowledging that they are in need of so much help and support. Ndolage Lutheran Hospital would like to learn how to fund raise even though charitable giving is not yet a concept that has come to this area. We hope to help teach them this.

While Susan and I were in the meeting, the sky opened up and rain poured down. It rained so hard, as it hit the aluminum roof, the sound was deafening. I couldn’t help but get a bit worried that Robin, Mary Beth and George had gone out to see another palliative care patient in this rain. I knew the roads wash out very quickly and become impassable in minutes, even in a truck.

Harrowing Experience

Soon we would discover that they had a harrowing experience. Unbelievably the team did cross a small river in the rain in the land cruiser. Mary Beth became very stressed riding in the front seat as she thought the truck was driving off a cliff. Truth be told, all week Mary Beth and I have had the distinct pleasure of riding in the front seat squished into one seat next to the driver. Mary Beth has marks on her knees from getting bumped with the stick shift. She graciously gave me the window seat. Our driver, Winston, would drive 60 miles per hour on back roads so bumpy you would be jostled around. We drove over a man made bridge that cracked at the weight of the truck. He would beep for children and walkers to move out of our way, he would skillfully drive down massive inclines at rapid speeds. It simply would not be a surprise if he attempted to drive down a cliff.

When they reached the patient’s home the path was washed away. The red clay dirt quickly becomes a kind of sticky red adobe. The team waded in their long skirts (women all wear skirts, even the babies), flat shoes and walked through the mud. This was the only day in six days Mary Beth forgot to bring her umbrella…the one day it pours rain.

Tanzanian Volunteers

The rain stopped just in time for the next visit. One of the most amazing aspects of this Ndolage team is its volunteers. There are 30 volunteers who are the “eyes and ears” in the community. They undergo an extensive three week training to learn assessment skills, identify signs and symptoms, the pain scale and assessing the psycho-social needs of families, and identifying the most vulnerable people in the village. They communicate the needs of their community directly to the palliative care team. They are one of the most vital aspects of communicating as there is no dial up phone communication. The volunteers have cell phones and can communicate with the team when a patient needs a visit or assistance. At almost each home we visited, the volunteer would meet us and bring us in to visit with the family and patient. We were most impressed by this tightly organized network of support.

When Robin, Mary Beth and George entered the house, they were amazed and overjoyed to find a four-day-old baby in the hut. This home had one small room with newspaper glued to the walls like wallpaper, hay on the floor, no electricity or running water. The family housed four generations of women: the 77-year-old grandmother with breast cancer, her daughter, her grand-daughter and the great-grand baby. This baby was born on Saturday—the same day we watched a 16-year-old girl dying of untreated diabetes in the hospital. The irony of this death is while a young woman died of a disease that is totally treatable in the US, the palliative care team, treated this breast cancer patient with a homemade compound of medications for her wound that was something we had never seen.

The team is integrative and holistic–they evaluate both the patients’ needs but address the entire family’s struggle, providing food and emotional support to all.

It was a hopeful visit for all.

Leaving Ndolage

Our departure from the hospital was moving and emotional. We had come to know our Tanzanian colleagues well. They had learned to trust us, we learned to trust their techniques and approach to patient care within their cultural boundaries. It was a process that took time. The team gave us beautiful hand-painted wall hangings for the staff and the office. They gave us hand-painted wood bark crafts to sell to raise funds for their program.

Most moving was the shirts they gave us that matched their teams shirts that say Palliative Care, Ndolage Lutheran Hospital. This was their way of telling us we are part of their team…their colleagues, their friends. We had a mutual respect for one another, understood first hand their challenges that are too enormous to even write in each synopsis. We learned that we can make some constructive and measurable differences in their patient care. It will take time as the cultural boundaries are there. The team is open and yearns for support.

We share the same goals of wanting to provide the best possible care to patients and their families living with life-limiting illness and loss. We share the same goals to ensure children and adults do not suffer. We share the same love for our community, wanting to protect the vulnerable. We shared smiles, tears and laughter, most often at George’s expense. We became bonded in a way that we never imagined. We will miss Amelia, Melichar, Esta and the Pastor Nshombo, and of course even Winston’s driving.

This is just the beginning of our relationship with Ndolage Lutheran Hospital’s palliative care team.

Reflection

As I write this last piece, we are driving in a truck in the Serengeti. We have been within feet of elephants. We’ve seen cheetah, zebras, giraffe, water buffalo, impala, beautiful birds, hippo’s, wart hogs, wildebeests and ostrich. The most beautiful part of the Serengeti are the sounds. Quiet grasses swaying in the wind, with the back drop of brown fields. As far as your eyes can see fields dancing and elephant families together in the distance. As we drive through marveling at the animals and wild life, you can feel an overwhelming sense of peace here. Its majestic landscape soothes.

I cannot help but think of Justa as I look out in the fields. I think of whether she will feel this kind of peace in her lifetime. She lives only a few hours from here, but has never left her village. She is not even aware these kinds of beautiful animals are in her country. I leave here with the memory of her in my heart. I will never forget her.