“Coordination between all the independent entities was ridiculously complex and needed full time project management!”

Patient: Nadipuram Srinivasan (NR)

Caregivers and Contributors: Rekha & Ram Kaushik (daughter and son-in-law)

Nadipuram Srinivasan (NR) was a renowned international expert in leather technology and traveled extensively. In addition to being fluent in many Indian languages including Tamil, Kannada, Hindi, and Telugu, NR had become proficient in German and Russian. His studies of classical Sanskrit drove his passion for Hindu scriptural texts. Upon retirement in 2000, he settled with us in Nashville TN and remained active in the Hindu community, teaching many classes on Indian philosophy (Vedanta).

NR was diagnosed with a brain tumor at the age 90. Until then, he had been completely physically and mentally functional. NR remained committed to exercise. He had been an avid reader and had prodigiously blogged about a variety of topics. However, after suffering multiple seizures and hospitalizations, NR experienced cognitive uncertainty, confusion, loss of speech, and loss of mobility among other ailments related to the brain’s frontal cortex functions.

Surgery seemed an aggressive medical intervention at age 90 and would likely further reduce his quality of life. The uncertainty surrounding the size and state of the tumor made gauging mortality difficult. Additionally, we come from a culture of familial care for the elderly, and NR loathed hospitals, so we decided to care for him at home. 

His deterioration followed an unpredictable trajectory. Cognitive functions would improve on occasion after seizures, but during his later stages, speech, mobility, and comprehension were permanently impaired. His condition deteriorated. His cane was replaced by a walker, which was replaced by a wheelchair, and finally a hospital bed. NR needed assistance with all activities for daily living (ADL). Despite NR’s valiant determination to overcome his illness, his frontal cortex damage fostered obsessive behavior and complicated his routine. This difficulty not only impacted NR’s abilities, but also exacted a heavy toll on us as family caregivers.

It took two people to help change him and prepare him for the night. It became difficult to lift the 160 pound patient into a shower chair and back into a wheelchair. Falls during chair transfers became frequent and getting him off the floor safely was difficult.  As swallowing became increasingly difficult, we had to change what we fed him. In the last few months his weakened cough reflexes became a choking risk and he could only tolerate soft foods and liquids.  His speech impediment made communicating with him throughout this process challenging. His condition would often fluctuate daily, and on occasion, by the minute We had to calmly cope with the crisis of the moment and not let it physically or mentally overwhelm us. We cared for NR at home for about 2 years before he passed away in February 2023 with his entire family at his bedside. 

Decision to provide care at home

When we began this journey, we were very ignorant. We struggled to make choices such as opting for home and hospice care. However, in addition to hospital social workers’ educating us, we also had a physician brother, without whom this journey would have been impossible, helped us make the tough calls. The coordination between all the healthcare entities (Medicare, insurance, caregiver companies, primary care doctor, specialists, hospice, social workers, etc.) was excessively complex and needed full time attention and project management!

Medication Management is a major caregiver responsibility since hospice conventionally avoids automatic prescriptions refills. Adjustments to medications happened almost daily depending on symptoms and  required frequent consultations with our physician. Social workers were helpful in suggesting lower cost alternatives for prescription drugs. Hospice was very helpful with offering supplies and medications. Home Healthcare aides gave tips on how to use Hoyer lifts, make home adjustments, and assemble hospital beds. Hospice was very helpful in the final week when NR’s end was imminent. 

Getting decertified from Hospice for the first time because NR was stable for a couple of months came as a shock! When he subsequently relapsed, suffering from seizures and was hospitalized, we scrambled to get him into a hospice again. Caregiving support quality from private (long-term/home healthcare) companies varied considerably.  The COVID epidemic added more complexity.

Our house had to be remodeled continually for patient safety and access including widening door openings, adding grab bars in bathrooms and showers, and wheelchair access. Figuring out which Durable Medical Equipment (DME) providers were covered by insurance and how much they would cover required substantial time commitment. However, the extensive phone calling and research oftentimes proved futile. The hospice provided a Hoyer lift during the last month, however their medical  bed lacked many essential features. We ended up buying most of the equipment including a medical bed, wheelchair, walkers, and monitors at a full retail price. 

 Caregiver self-care is critical

This journey changed our life priorities quickly. Balancing two jobs while managing care became an impossible undertaking. As a result, we notified our managers at work and switched to a more flexible part-time schedule to enable caregiving to be our first priority.  We were sleep-deprived for 2 years as we had to care for NR 24×7 and took a physical and mental toll on us. Taking care of our 83 year old mother simultaneously was equally important. Physical demands of lifting and moving NR between the bed, wheelchair, and shower caused back and elbow issues. Running even minor errands became a huge challenge, as at least one person had to stay with NR. We found respite in small pleasures – a ½ hour of TV, a few pages of reading, music, and  gardening. 

Reflections

 The complexity and magnitude of full-time caregiving was a humbling experience for us. Imagining what family caregivers of patients with Alzheimer’s, MS, Parkinson’s, and many other illnesses go through, made us more empathetic to those caring for their loved ones every single day. Once a decision of “no intervention” and “home-care only” is made, the family is left to fend for themselves. There is no roadmap for families to follow in their home care journey. The complexity, cost, and inefficiency of the caregiving system was a revelation. It is incomprehensible how an average household copes with healthcare expenses!