Never too late

My dad, being a senior psychiatrist in the country, often visits his patients at their home. I never understood why he had to go and see them. Why can’t a patient come to him? I used to ask him this question, and he used to say, “Well, it is difficult for patients to come; patients do not want to come. At times, family members insisted on the visit,” and so on and on. Being in the medical field for the past 22 years, I have never visited a single patient at home. It is not that I was not approached, but I always deferred and denied with excuses. I did visit only families and friends when they were sick. All these years, I always thought that if a patient needed help or advice, they should come to us rather than us going to them. This was my notion before I visited Kritesh at his home.

Kritesh is a 20-year-old handsome boy, and his parents have requested a home visit several times before. Many of you may be wondering why this boy needs a home visit. Kritesh has a condition called “Dystonic Cerebral Palsy.” The condition was a complication of his severe jaundice when he was born. Since then, he has never been out of bed. At 20 years of age, he is completely bed-bound. Making him sit on a chair is a big task and requires at least two people. When touched or any kind of stimulus or when excited, his whole body becomes like a hard log. It is like winning a battle when cleaning, dressing, and feeding him without arching his back, and without choking. When he arches his back, he used to have choking episodes, and because of that, he used to have pneumonia.

When I first saw Kritesh, he was about 5 years old. It has already been 15 years now. Wow. His parents used to bring him to me almost once or twice a month. Most of the time, when they visited me, he was accompanied by both the parents and a helper boy. They used to carry him. Sometimes they would come as he cried throughout the night for several nights, sometimes with a bad cough and sometimes with constipation. On a few occasions, he even had some blood vomiting. He got admitted to a hospital a few times as well. He was on regular treatment along with physiotherapy and medications that are available in the country (all the sophisticated treatments available in developed countries are not available here).

As he was growing bigger, the visits became less and less frequent. He had fewer choking episodes, and his sleep was better with medications. As he was growing bigger, it was a challenge for the family to bring him to the hospital. That’s what his mother always used to say. Mother used to telephone me directly for his health problems and I would prescribe medications over the phone. For some medicines, they require a written prescription from a doctor, and for that, a mother or father would come for a brief visit in the hospital. Whenever they visited, they always asked whether I could visit Kritesh at home. They even proposed to pick and drop me off for the visit. Kritesh’s home is only 5–7 minutes drive from the hospital. They have a big car and a helping hand. Why should I visit? Since they need me, they have to come to me. Egoistic thoughts! I always deferred with a big smile. “Let’s see.” “Maybe someday.” It’s been years, and I never visited.

A few months ago, on this fine day, I was reading a book by Oliver Sacks, “An Anthropologist on Mars.” In that book, he mentioned how he visited his patients at their homes, talked to them over a coffee in a cafe, and how that helped him understand his patients better. At that moment, I felt like I was hammered. How much do I know about Kritesh and his family? I have known him for the last 15 years, and yet apart from his dystonic cerebral palsy, I know nothing. I immediately wrote to his mom to tell her I am visiting Kritesh soon. Months passed, but I could not gather enough courage to visit. I have never been to a patient’s house. Will this cause a professional breach? Professionals should not be close to their patients. Will I be able to do justice to other patients? Once I visit one patient, I will have to visit others as well. What will my colleagues say?

Finally, I managed to visit Kritesh. I was kind of nervous. I drove to his home. His parents were waiting for me at their gate. I went inside, and I did not see Kritesh. We talked about a lot of things. The mother shared with me about her journey after Kritesh was born. She used to be a carefree, happy-go-lucky person; she used to work in INGO; and now she is a homemaker and 24-hour caretaker for Kritesh. She shared her dreams of traveling the world, and now she is completely housebound. For 20 years, she never had a single night out. She loved to dance, and she almost forgot it. Thanks to COVID and TIKTOK, she found her passion back and is now an influencer dancer. That is the only time she feels liberated. During our conversation, she mentioned that her husband had to take a partial retirement as the helper left, and it is difficult to take care of Kritesh all by herself. She has developed bad backaches and pain in her arms as she has to carry him many times a day. I was there, only nodding. Her husband would come in between and say, “Why are you talking so much?” “Why are you sharing your stress?” “ Let the doctor have her coffee peacefully”. I felt that she wanted to pour her heart out. At one point in time, I felt a hard punch when she mentioned that when Kritesh was born with severe jaundice, he was not timely managed. She is still angry, but she has completely accepted the fact that Kritesh is never going to walk, talk, or even sit. During our chit-chat, she even asked how long Kritesh is going to live like this and if there is any way to terminate the life. At times, it is unbearable for her to watch her only adult son suffer. I had no answer. I also felt like crying, but I just smiled. We had coffee. We talked for about an hour as Kritesh’s father was feeding him upstairs. He is excited whenever there is a visitor and may vomit. So we waited until he finished his meal.

As I was climbing the stairs, I was excited, as I had not seen him for about 5 years. He was sitting in his chair, wrapped around by a belt around his waist. He recognizes his parents and he recognised me. He cannot utter a word; only a few sounds but he can demamd for his needs ( eg: TV, radio) by hitting his back of the hands on the chair ( he has developed callous on his hands because of this).

When I called him, he was surprised and all smiles, and he arched his back. He has grown taller. There were pimples on his cheeks. He could not talk, but I could see sparkles in his eyes. I could not stop my tears. I was speechless. I looked around. There were two more broken chairs in the corner of the room. Arrangements were made for the wheelchair to move around. Another corner had medicine boxes and a radio. He was listening to old Hindi song and seem to enjoy it. Mother told me that if she changed the song, he would frown.

Mother requested if I could do a quick physical examination on him. She took him to his bedroom. To transfer him to the bed from a wheelchair, it required two people (his mother and father). Then I could imagine how much effort it would take for them to take him downstairs and keep him in a car for a hospital visit. As he has grown taller, accommodating him in a car itself was a challenge.

Before departing, we took a picture together. His mother put her arm over my shoulder. At that moment, I felt so small. She is so empowered and a strong woman and No doubt, she is an inspiration to many. She knows everything about taking care of his son. And as a doctor, I could do so little to help him.

When I said goodbye, Kritesh expressed his sadness clearly on his face. I also felt sad and regretted not visiting earlier. I came home with a heavy heart. But again, this visit helped me understand Kritiesh and his family better.

This is the story of a well-educated and privileged family from a city. Yet they are facing lots of struggle. It is a challenge to get even a single appropriate wheelchair for Kritesh. There are many other families with different visible and invisible disabilities and all are not privileged. Modification of surroundings at home and outside, disability-friendly environment, easy accessibility to health care and education at times seem far-fetched.

If they can not visit health-care system, why can not health-care system visit them at their homes? This may look like an ambitious dream but not impossible.

As Maya Angeulo says, “Do the best you can until you know better. Then, when you know better, do better.”