By Dr. Gayatri Palat | Honorary Secretary, PRPCS
Community Outreach Program in Chevella Mandal, RangaReddy District, Telangana State
Waiting for the exit visa
The small (8 by 8 feet) room has a broken cot, an old television, a few utensils, and an Eastern style toilet.
This is the world of M. Arjun.
Arjun is awake at 8a.m., but he waits, his body resting on its side; he waits for someone from the neighbourhood to come over and set it upright. Once somebody sits him up on the floor, Arjun remains sitting in that same position all day, his back straight and arms and legs half bent in front of his torso, watching television. He cannot flip the channels. If anyone passes by, he calls out to them but sometimes he is stuck watching the same channel all day. This is his day, every day.
Today, he is watching a Telugu news channel. We ask him if he wants it to be changed.
“I am following the developments in the Sasikala story,” he says. “It looks like Palanisami will become chief minister. I am waiting to see what happens in Tamil Nadu.”
To me, Arjun’s life is a life of waiting.
He used to work as a driver. He had a wife. Three years ago, at 32, he developed weakness in his legs and was diagnosed with a rare and incurable condition called limb girdle muscular dystrophy. Doctors told him it would spread to his arms as well.
Soon, everything changed, his life changed. He lost his job. His wife left him a month later. Today he is almost a quadriplegic. The horror is that his mind is unaffected by the disease, making his life a waking nightmare. He has had to watch his body slowly slip into disuse.
“There is no strength in my legs and left arm. But there is still some strength in my right arm. I can’t lift it, but I can press down with my fingers.”
He demonstrates this by pushing buttons on the mobile phone lying in front of him. A call goes to our physiotherapist, Ashok, who is standing nearby. We laugh. Ashok has been seeing him for two years as part of our palliative care rural outreach program.
We are in Antharam village, about 50 kilometres from our base in Hyderabad. Once a week our team (a doctor, nurse, physiotherapist, and counsellor) visits one of the 30 villages in Chevella Mandal that falls under our program. We see patients in the community with cancer, stroke, heart disease, and other diseases that are life-limiting or terminal and we try to improve their quality of life by providing care for their physical, mental, social, and spiritual suffering.
Arjun has developed severe pain in his legs in the past one month and so we have started him on morphine. We have identified and trained a 24-year-old man from the village to visit Arjun every day to help with his care taking, feeding, personal hygiene and other routine chores. We have raised funds to offer the caretaker a small monthly pay for his service.
“Now I can call Ashok,” he says. “But one day this power in my right hand will also go. Then nothing will be left. I used to be able to straighten myself if I leaned forward or sideways. But now if I lean too far I can’t get back up on my own.”
“How do you keep the phone for charging?” I asked.
“The man who comes to take care of me keeps it for charging at night. In the morning he keeps the charged phone near me.”
“Is he coming regularly?”
“Yes, he comes once in the morning to bathe me and give me food and water. And then he comes once more in the evening.”
“Do you want some water now?”
“No, I don’t drink water in between. It will be difficult to go to the toilet. I drink one litre in the morning and one litre at night.”
Arjun cannot take his medicines on his own either. So we only prescribe medication that needs to be taken twice a day. I explain the medication and dosage to Arjun’s helper. He is a graduate and hopes to get into a post graduate program soon. I tell him he is doing a great service by taking care of Arjun. He smiles.
If it weren’t for him, it’s hard to imagine how Arjun would get by.
Oddly, Arjun’s parents live nearby, but they aren’t in talking terms with him. Apparently, Arjun had lived a brash and careless life in his youth and didn’t pay heed to any of his relatives. He regrets it today.
Our counsellor has been sitting on the ground next to him all this while. We provide counselling and spend an hour during every visit just listening to him.
It is time for us to move on. We tell Arjun that we will see him again next month.
As we leave, I think of the three other patients we still have to visit. I think of getting back to Hyderabad, and of the meetings with the paediatric palliative care team.
Then I look back at Arjun, who is still sitting on the floor, his back straight and his arms and legs half bent in front of him. It is almost a meditative posture. He will be waiting in that room every single day of his life ahead… waiting… and waiting… and waiting.
Kumudini Devi Hospice and Palliative Care Centre, Kukatpally, Hyderabad, Telanagana State
Kumudini Devi Hospice is a full-fledged 24 bedded in-patient facility offering palliative/ end of life care to patients suffering from terminal illnesses like cancer. This facility is run by a charitable registered society, the Pain Relief and Palliative Care Society, Hyderabad. The entire care is provided free of cost which include medical care,medicines, recreation and rehabilitation and food for patients and their care givers, transportation facilities for shuttling the patients between the hospice and the tertiary care centre namely MNJ Government Regional Cancer Centre and transportation of dead bodies from the hospice to their respective homes in the district towns. A dedicated team of trained staff consisting of three doctors, eight nurses, 11 attendants/ cooks, one social worker, 1 physiotherapist and other supporting staff are available 24/7 to provide care and support to such patients. There is a dedicated facility to provide care to children with advanced cancer and their families.
Pain Relief and Palliative Care Society has cared for 381 new kids and 2763 review childeren with cancer as a part of dedicated pediatric palliative care program in the year 2016.
At the Kumudini Devi Hospice we have admitted and cared for 348 Female, 326 Male and 62 children with advanced cancer in the year 2016 and more than 50% of our patients passed away peacefully and comfortably where we provided free transportaiton of the dead bodies to their respective homes free of cost.
In the Home based palliative care program, Life at your Door Step we have seen 417 new patients and 2438 review patients depending upon their priority in the year 2016 and keeping in view the increase in number of patients who need palliative and end of life care in the home setting, we have started 4th home care van from 1st February 2017. With this we are also trying to provide continuity of care to our patients abd trying to increase number of visits to provide quality and comnfort care.
We look forward for your continued support in our endeavor to provide palliative care and end of life care to terminally ill patients and belonging to the poorer sections of our society.
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By Dr. Gayatri Palat | Honorary Secretary
By Dr. Gayatri Palat | Honarary Secretary
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