ALS Diagnosis

Our father, Mr. Surendra Kumar Narula was a healthy, active, and hardworking man who did not require to take any medicine anytime until he was diagnosed with ALS in August 2016 at the Fortis hospital Jaipur and given two years to live with no effective treatment. He was just 59 then. My sister Reena, a Physiotherapist at the same hospital, informed me about his diagnosis over a phone call which shook me. I was a married research student at IIT Bombay and away from papa. Clueless about how a mild weakness in his hand can progress to take his life, I with the help of my wife Neha, researched intensively about ALS and joined various ALS-related communities online. This brought depression and nightmares after which the only desire I had, was to support and be at my father's service. Accepting his illness and future came with great pain. Despite facing a lot of difficulties in performing office work, papa managed to complete his state government service and retired in April 2017.

Creating Memories

We decided to create and capture a lot of memories with papa. Papa, mummy, and Reena were super happy and excited to fly for the first time in their lives from Jaipur to Mumbai in December 2017. They stayed with us at the IIT campus for a couple of weeks where we captured many videos of papa dancing, singing, and sharing his life experiences. We used to observe him very closely for any kind of progression.

In March 2018, we all made another memorable family trip to Mount Abu where papa fell down a couple of times and was unable to get up on his own. We realized that he had progressed to a point where we needed to be alert.

Progression, Acceptance and Management

In June 2018, his speech became slurred so I ordered an affordable eye tracker for his future communication. We recorded many videos of him speaking as we knew that he would not be able to speak in the near future. Till August 2018, we could see sadness and depression on his face as he was not able to comfortably swallow or drink. At that point, we had this mindset to instill in him a fear of feeding tube surgery that he must eat otherwise he will have surgery. We felt his pain for the first time when without seeing how much the surgery would cost or how painful the procedure was going to be, he said get my surgery done. It was a moment of acceptance from him and we were taken aback by his reaction. He had a PEG feeding tube by September 2018 and it brought a lot of happiness when we saw him getting satisfied with good nutritious food and fluids. The Feeding tube brought his smile back and remarkably improved his health. Meanwhile, we noticed his labored breathing while sleeping and speaking, so a non-invasive ventilator (BiPAP) was prescribed for him which made his breathing much more comfortable. In December 2018, we bought a wheelchair for him which made our lives a lot easier. Papa always wanted himself to be taken out on his wheelchair and we did that as per his demand.

Struggle for Survival and Memories at IIT

In the meantime, Reena got married in January 2019 and I didn’t want to leave my parents alone, so I took them along with me to Mumbai at the IIT campus to stay with us, through a train journey with papa being on a wheelchair, BiPAP, and feeding tube. It was a fresh change for all. I used to push Papa's wheelchair as per his wish in the beautiful campus and capture photographs. We fed dogs and walked in serenity where he could still see the beautiful world. Due to his increasing dependencies, caring for him and managing my research work at the same time had become very challenging. We were unable to find a dedicated and reliable caretaker for him in a big city like Mumbai at an affordable cost despite our efforts as I was still a research student. Seeing the cost and dependency needs, I took the decision to go back to Jaipur at our home with my parents in March 2019.

Tracheostomy

After our return to Jaipur, his health rapidly deteriorated and I had become his primary caregiver while Reena used to visit us frequently for papa’s caretaking. Neha was bound to her job and working in Mumbai. Papa struggled with cough and respiratory issues for around 2 months and finally collapsed with a mucus plug which led to an emergency tracheostomy on May 11th, 2019. The uncontrollable seizures in the ICU paralyzed him fully with a limited ability to communicate through eye moments and by raising his right hand. There was no time to mourn what was lost in him, since that time we were always on go, always alert and ready to fight so we brought him back on a ventilator to our home ICU setup at the end of May 2019.

Back to Home ICU

The initial months were very difficult as papa was not doing that great despite the presence of super expensive and “trained” ICU nurses. We were shocked to know that they were skipping his medicines, not maintaining proper hygiene, and were not attentive to his needs as basic as suctioning. After multiple replacements, we found dedicated and knowledgeable nurses for him. It was a great relief to see papa getting better on a daily basis and he started responding with a smile. In July 2019, we joined the ALS Care and Support Group where we came across many families like ours. With the help of the group founder, Miss Satvinder Kaur, we were able to change Papa's ventilator settings which was a crucial step leading to further improvement in his well-being. As papa’s nursing care was becoming very expensive, I decided to raise funds online through Milaap and received excellent responses and contributions, primarily from my IIT friends.

Struggles After Mother's Death

Meanwhile, we lost our mother to pneumonia in January 2020 which changed our lives and responsibilities forever. Reena and I decided to take a career break and serve papa as his primary nurses. In February 2020, we had to admit papa to the ICU due to severe uncontrollable diarrhea where we learned about his hypothyroidism and GI sepsis which has a 72% mortality rate. He made an incredible recovery and after 12 days we got him discharged with the determination of improving our protocols.

During March 2020’s lockdown, we had to push our limits for papa’s care as our assistants left the job one by one. I learned a lot of things from Reena including the art of dressing, solo patient handling, position change etc. It was not only her medical background but also her dedication that was clearly visible to me. Lockdown brought the father-son-daughter trio closer. Papa’s health improved a lot under our personalized care. We had understood that for taking care of PALS, dedication, observation, and research are much more important than qualification. While we were maintaining papa, our respective spouses were with us helping us manage all other aspects including household chores and our emotional health. In October 2020, Reena and I both caught a covid infection and we had to isolate ourselves. This was a tough time but papa’s old nurses agreed to join until our recovery. Our spouses took great care of us and coordinated with the nurses for papa’s feeds, medications and monitoring.

In December 2020, we had to admit papa to the ICU as severe constipation made him very sick. Investigation reports revealed that uncontrolled diabetes, highly elevated TSH, and hypokalemia caused complications such as paralytic ileus, metabolic acidosis, hypothermia, reduced urine output, UTI etc. Doctors discouraged us from further treatment as his body started swelling and he was on the verge of kidney failure but we insisted on continuing their efforts to revive him. Miraculously, he recovered, but doctors warned us that he may not survive for long due to super sluggish bowel activity. Moreover, Colistin infusion took away all his body movements and he was left with minimal eye movement only. We discharged him on request but again he became very sick and drowsy with abdominal distension, severe digestive issues (IBS-M) and excessive edema. It seemed that we were going to lose him as he did not respond for many weeks but we maintained our patience and kept caring for him as per the schedule and made sure to keep his vitals stable, maintained the record of feed intake vs urine output, gave symptomatic treatments with medicines and home remedies. We kept working, experimenting, waiting, researching, improving our protocols iteratively based on his response and maintaining our faith. Stabilizing him took 4 months even after the ICU discharge. After continuous recursive learning, we came up with a feed chart, medications and list of protocols that worked for him. Ever since we have not visited any doctor or hospital.

Previously when he could respond through facial expressions maintaining an eye contact, that alone gave us the fruit of our care. We have overcome the sadness the progression brings. Gradually our expectations have also gotten realigned and tuned. We look after him like a new mom with the faith that the baby which is being fed, cared for, and kept comfortable, will be ok. Talking randomly whether the baby makes sense or not, singing, playing his favorite music just with the faith that it will be relaxing him. We truly believe that no nurse can replace our duties and roles. His subtle smile, which can be difficult to be noticed by others, gives us pure joy and motivation.

Being caregivers of our dad is an honor. Papa used to say that people know him because of our scholarly and professional achievements. Now, we can say that people know us because of his spirit to live and become an inspiration. We always remember his catchphrase: “Life is struggle and struggle is life”, which keeps us going despite the difficulties. It is a blessing in disguise to have great life partners & family members, whose contribution is immense and we forever feel grateful for their sacrifice and selflessness so that we are able to take care of papa efficiently.

Harsh Kumar Narula
October 25, 2022