Lonely life in a wheelchair in rural India

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Kendall Kikuts, the guest blogger, after her climb from Braemore Estates to Ponmudi

In the small town of Karakulum, I finally grasped the seriousness of the wheelchair un-friendly environment here in Kerala. It is a very rural area with most roads only made of dirt. Like much of Trivandrum, there are not sidewalks. Nothing is paved. Walkways are commonly unfriendly even to those without physical challenges, as they are horribly filled with ruts, jagged rocks, and large tree roots. Most homes are situated up on hills and have short hikes to reach the front doors.

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We visited several patients in Karakulum with spinal cord injuries leading to paraplegia. The first home was only accessible by a small footbridge that took us over a stream. From there we had to climb a dirt and rock hill to get to a small home with three steps leading into the front door. The home was dark with little view of the outside. This patient was a paraplegic after he had been a laborer and had a bad fall from a roof. The man cannot work and his wife now lives elsewhere so that she can work, as employment opportunities seem harder to find in Karakulum. She visits him monthly. His care is provided by his parents, but both work during the day, so he is alone from morning until they return home from work.
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I noticed a wheelchair in the room and asked if he used it. He said sometimes he uses it, but it takes two people to get him into it, so that cannot happen everyday. I thought of the stairs leading into the home and the dangerous hill immediately below the stairs. If he could somehow make it out of his home, there were still no sidewalks or paved streets. The small footbridge we crossed to get to the neighborhood would be impossible to cross even if there wasn’t a steep, unlevel and unpaved hill to get down first. Just the environment itself is life-limiting.  I couldn’t help but think of how hard it must be to know that fresh air is only a few yards away, but to be unable to get to it. With his family working all day and not being able to simply get outside to wave at neighbors, I could only imagine the loneliness that must go along with this life he leads, all while wearing a smile.

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As we thanked him for allowing us into his home, he pointed to the wall. He wanted to show us a family photo. At this point I realized this man has a daughter. He was so proud of her and was excited for us to see the photo. I was heartbroken by the realization that he probably doesn’t see her often and that it is impossible for him to leave his home to visit the daughter he clearly loves so very much.

 

Our third visit required a bumpy drive down a dirt road through banana trees and a quarter mile hike through a forest up a steep, rocky hill covered in slippery leaves and complicated further by large tree roots that came up to my knees. The doctor made sure to put on her own knee brace before making the climb, as injury for any of us was not out of the realm of possibility. We climbed two steps to enter this home to visit a paraplegic man who had fallen out of a tree while working. This man was able to get himself from his bed to his wheelchair and back, but his chair could not make it down the steps to reach his yard. Beyond the steps was a small, four-foot dirt yard and then a steep downward slope into a tangle of trees and brush.

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There would be nowhere for him to take that wheelchair if he were able to get down the steps. To reach the nearest area that a car could be parked to take him anywhere, he would need to be carried down the treacherous hill we had climbed. Even attempting to make it there independently would be death itself. Again, his parents lived there with him, but they both work all day, and this man does not have any company. I was so sad for him that his environment makes it impossible to even visit a neighbor to enjoy a conversation. Being paralyzed should not mean you have to be lonely, but in this place, that is a harsh reality.

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I am saddened to realize how much more of a life these patients of Pallium India would each have if they simply had sidewalks and wheelchair ramps. These people deserve to feel the sun on their skin and be able to see the birds they can hear all morning from the homes they are imprisoned in, but until we create a Trivandrum that is welcoming to their differences, we are not able to offer them the lives they deserve. I can’t even begin to pretend I have a solution for this problem, but I pray we can find one.

I was suddenly struck by how proud I am to be here learning from Pallium India because they provide in-home physician visits to people who would otherwise have no other option for receiving healthcare. There is an immense need for what they do every single day. Outpatient clinic visits are not a reality for the people I met today. In this way and in many others, Pallium is truly a one of kind, special organization. The world has a lot to learn from these selfless and hardworking people.

Kendall Kikuts is a nursing student at the College of Nursing at the University of Iowa.  She works as a nursing assistant on the Bone Marrow Transplant Unit at University Hospitals and Clinics.

Photos are by Gengxin Shi who is an engineering student at the University of Iowa.  All photos are done with permission.

 

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The Gold Necklace

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Rachel Parry, the author of this guest blog is a PharmD student, shown here on a houseboat on the Ashtamudi Lake

The last patient we saw today broke my heart, especially as I learned more about her. She was in her thirties and had suffered from a stroke 4 years ago that left her debilitated and unable to talk. I first saw her lying on her bed, many of her muscles contracted in ways that distorted her joints and made her bones look broken. We made eye contact. I smiled, but couldn’t recognize any change in emotion on her face. I noticed she wore a gold necklace (typically given to brides in Kerala) but the man and woman taking care of her appeared to be her own parents. I thought that was odd, but didn’t dwell on it. She had scars from a tracheotomy after a surgery, and she had been nourished through an ileostomy until she could consume the liquid diet she now lived on. I thought to myself, “I don’t know if this is a life I would choose to live.” Then I looked up and caught her father gazing at her with more love in his eyes than I can describe.

 

As we were leaving, I found out that my initial assumption that she’d had an ischemic stroke was wrong- it was hemorrhagic. They said she had been trying to divorce her husband who was domestically violent. They didn’t confirm that a traumatic head injury he caused led to the stroke, but they alluded to it. The bleed in her brain could possibly have been from high blood pressure.  Her mom brought out an old photo album with family photos from when she was a child and teenager. The mom showed us photos of her daughter, the patient, with her estranged husband and their own daughter getting her gold bracelets at 28 days old.

 

I realized the young woman lying in the bed upstairs, unable to move herself, was a mom.

 

I could see the heartbreak in the patient’s mother’s eyes while she spoke to us in Malayalam. I doubt a husband who abused his wife to the point of causing a stroke allowed her parents to see their granddaughter.

 

The patient was young. I know her parents loved her, but from where I’m sitting it looks like her entire future was stolen from her- the future where she got to raise her daughter; the future where she got to walk. It was stolen, presumably, by the man who gave her the gold necklace that still hung around her neck.

Editor’s note: Rachel is among 12 students who are participating in India Winterim at the University of Iowa, and more specifically in the Pain and Palliative care course.  This section of the course shadows the hard-working staff at Pallium India, which provides palliative care in Kerala.

 

Nurses rock!

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The author, Taylr, after the 3 hour hike to Ponmudi

Today was the third day of home visits, and I went back to the same city that I went to on the first day. It was nice to go back because I started to recognize places I had seen before, which made me feel more comfortable. We were shadowing a nurse instead of a doctor, so it was nice to also see what roles a nurse plays in India compared to America. We saw five patients that I did not see the first day that I went, which helped me to understand just how many people can be under Pallium’s care in a single city alone.

We saw five patients, two of which were first time patients. The nurse that we followed, named Anu, was very kind to the people that she was caring for. She listened intently and took time to consider everything that the patient was describing to her. I really admire this in Anu because passion and empathy are two important factors in considering the quality of a nurse. I hope to one day be able to show that kind of care to my future patients.

Since we did not have a doctor present, most of today was just simple checkups and refilling medications. I enjoyed having the simplicity because it gave me more time to focus on patients outside of a medical aspect. We met an elderly lady who lived at the top of a steep hill with her two granddaughters and their parents. She was being treated for breast cancer and a shocking type of pain around the right knee joint. Immediately after we entered the house we were given a place to sit, and handed lemonade to drink. We didn’t drink the lemonade due to it probably being made with the tap water, but I was honored that these people would choose to use their limited resources on us. Another patient we visited was being treated under the diagnosis of old age, and despite her complaints of nausea and trouble sleeping, she found time to joke around with us and laugh, which was one of the liveliest and down to earth laughs I’ve ever heard.

Although we didn’t see much medical treatment outside of blood pressures and blood glucose testing, I thought today was a very educational day regarding the more holistic side of nursing. I was very glad I had the chance to really focus on caretaking in a sense not often seen.

Kaley’s guest post about the first day of home visits

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Kaley-NOT on her home visit

Editor note: Photos below are from Gengxin Shi, who has a great eye for composition. They are not from the home visits to Karakulum where Kaley went, but they will give you a flavor of the countryside and the faces of the Malayalis–the people who live in Kerala.
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Yesterday was the first day of home visits with Pallium India. I wasn’t sure what to expect, I was nervous going into it, in all honesty. We traveled around 35-40 minutes out of the city to reach our first patient who was a middle age man who had fallen out of a tree around three years prior and suffered a spinal cord injury that left him paraplegic in both legs. I think what was most memorable for me about this visit was how all the family, including the patient himself, were in such good spirits. The man and family welcomed us into his home and into the room with the doctor and was more than happy to answer any questions we had. Similarly, we found out that he continues to drive his (modified) rickshaw daily. Having that kind of optimistic outlook was truly inspiring.

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The second patient we visited was probably the most shocking and thought-provoking home visit I saw yesterday. It was a 90-year-old women who was suffering from dementia who was living in a small concrete house atop a very steep and tough terrain. This woman was born in the same house that she currently lives in and has been using a charcoal burning stove with extremely poor ventilation throughout the rooms. She had recently just developed a cough that sounded painful, but I just couldn’t believe how this woman had lived there for so long without any other serious medical issues. On top of all that, her daughter has cervical cancer along with spots on her lungs. Despite their living and health conditions, I felt that they were both still in high spirits. The woman was cursing (I assume) her dog that had been incessantly barking outside of the house for the entirety of our visit and it sounded like there were many laughs and smiles amidst the visit.

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Overall, I was extremely happy and put at ease with the first round of home visits. I enjoyed being able to see the lengths that Pallium India travels to assist their patients and offer support. The patients and their families seemed extremely grateful for the time and services they were provided and it felt like a very well formed relationship had been formed with most of the patients. I would say that one of my favorite things about the home visits was getting to see the insides of each patient’s house. I loved being able to see the photos and wall-hangings they placed. It individualized each patient for me and gave me some sort of sense of what seemed important to them whether it be family photos or religious hangings. I’m extremely excited to see what the rest of the visits have in store!