Experiences in caring for the elderly in a rural hospice

Dr. Preethi Chandramohan, Kumbakonam

Context: The Annai Adhuragam Hospice, is a charitable trust, situated in a village, Thimakudi, that is approximately 5 kms away from the nearest town, Kumbakonam in Tamil Nadu. The 20 bed cancer hospice is currently managed by a physician, 3 dedicated DNA (Dedicated Nursing Associates) and ANM (Auxillary Nursing Midwives) nurses, a trained volunteer social worker and a volunteer physiotherapist. The hospice has been serving the local community for the past 7 years and has made a difference in the lives of over 200 terminally ill cancer patients.

Mrs. Vasantha (name changed), was an 84 year old cancer survivor and a retired school principal of an elementary Government School. Mrs Vasantha lived with her 87 year old husband in a village located 2 kms. away from our hospice.

The couple approached us in February 2021, as Mrs. Vasantha had lost functionality in her lower limbs with numbness from waist downwards. Her husband was distressed due to his inability to comprehend the sudden onset of her symptoms and Mrs. Vasantha was distressed because she felt that she was becoming a burden to her husband. The pandemic imposed limitations instilled within the couple, a sense of urgency to ensure that Mrs. Vasantha became mobile and independent to meet her Activities of Daily Living (ADL).

Mrs. Vasantha was therefore immediately admitted to our hospice after undergoing her COVID tests. Post admission and a clinical examination by our physician, she was diagnosed POST MRM / secondary spinal mets / hemiparasis with spinal cord compression. Their psychosocial assessment revealed that they had planned well for their retirement and were therefore not financially distressed; they had accepted that one of them would outlive the other and were therefore also not spiritually distressed. The loss of Mrs. Vasantha’s mobility was their only concern.

Mrs. Vasantha and her husband

The warmth that the couple shared and their collective decision-making process caught our team’s attention since the day they arrived at the hospice. The couple’s inherent nature to be vocal about their needs and concerns, made it easy for us to gauge their vulnerabilities (in terms of their dependence and abandonment) and provide them with the necessary and appropriate psychosocial support. At a time when the palliative care community is working hard to propagate Advance Directives, it was reassuring for us, when we learnt of their desire to not want any invasive treatment and that they only wanted to live together comfortably until Mrs. Vasantha drew in her last breath.

Our physiotherapist encouraged Mrs. Vasantha to begin walking, with the support of parallel bars. We were pleasantly surprised when the strong willed Mrs. Vasantha, graduated to moving around in a wheel chair all by herself, within a week! Now empowered and confident of being near normalcy by March 2021, with no pressing issues, allowed us to discharge Mrs. Vasantha and continue providing care to her via our free home care services. Our local presence has proved to be a comforter for many such chronically ill patients in the community we serve.

It was unfortunate however, that both Mrs. Vasantha and her husband got infected by COVID in May 2021, during its second wave.

We learnt that the elderly couple were finding it extremely challenging to manage their treatment at the local Government Hospital. One of the privileges of being the administrative in-charge at the hospice allowed me to authorise their admission at the hospice and accommodate them during their last week of quarantine and also offer assistance with other matters. Our nursing aides were educated to practise and adhere to the isolation protocols to prevent the spread of infection within the hospice. Our social worker helped address their concern of ‘How long will this continue?’, plan their advanced directives and help arrange for the couple to meet their extended family before Mrs Vasantha lost control of her mental capacity. Support was also extended to help them access online banking and postal services, making video calls to connect with their loved ones, using public delivery system or transportation services, continuing their religious practices, etc.

Though Mrs. Vasantha recovered from COVID, the dreadful disease debilitated her physically. She understood that her health would now follow an accelerated downward spiral. Not having to worry about planning for daily activities, the availability of quality food and shelter, access to professionals in a secure environment, the company of patients sharing a similar journey and their need for constant physical presence were incentive enough for both Mrs. Vasantha and her husband to extend their stay at the hospice.

They were now not lonely anymore!

During their stay at the hospice, we realised that Mrs. Vasantha’s husband was a voracious reader and that he was possessive of his wife and therefore enjoyed caring for her.

Mrs. Vasantha, fully grasping the gravity of the situation, agreed to extend her stay at the hospice because she knew that staying at the hospice would mean that she needn’t part from her husband despite her deteriorating health and that her husband would have access to free medical assistance along with being distracted as he enjoyed using the in-house library at the hospice.

Mrs. Vasantha’s last week:

Mrs. Vasantha had now lost appetite and ate only to console her husband. Regular counselling helped Mrs. Vasantha’s husband to understand and accept that his wife was now receiving end of life care.

Mrs. Vasantha became completely bedbound; we encouraged and facilitated the couple to engage in bedside talking so that they could reminisce their pleasant memories. As time progressed, Mrs. Vasantha became too tired and was unable to communicate verbally. We now adjusted her goals of care and encouraged Mrs. Vasantha’s husband to share the bed with her so as to create an opportunity for them to spend time together while also providing Mrs. Vasantha’s husband a healthy coping style.

We addressed their opiophobia and began administering oral morphine to manage her increasing pain. Mrs. Vasantha’s choice to refuse an Air bed was respected despite counselling them of the advantages of using one. We therefore continued to provide her with quality bed care.

One morning, Mrs. Vasantha bid adieu to the world as she gazed both thankfully and peacefully at her husband and the nurse before closing her eyes forever.

We continued to honour her request and arranged for her eyes to be donated and planned for her funeral as per her instructions. We are pleased that Mrs. Vasantha’s husband accepted her passing, and his loss gracefully; he continues to visit our library till date.

About the Author: Dr. Preethi Chandramohan is the Joint Secretary at the Annai Adhuragam Hospice at Thimakudi, Kumbakonam, Tamil Nadu.

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