World Alzheimer Day is observed across the world on September 21, every year, with the objective of raising awareness of the disease, common symptoms, and risk factors. The day is significant as it aims to make people aware of the cause and severity of Alzheimer’s disease. This year’s theme of World Alzheimer’s Day was ‘Never too early, never too late’. As per the study ‘Deep phenotyping and genomic data from a nationally representative study on dementia in India’, the prevalence of dementia among the elderly population in J&K is the highest in the country at 11 percent against the national average of 7. 4 percent. According to Dr Atif Kawoosa; doctors in Jammu and Kashmir have seen thousands of senior citizen patients over 4 years and most of the patients had symptoms of mild cognitive impairment and mild dementia. There are different reasons for Alzheimer’s disease like stress and lack of physical activity. On 22nd September 2023 I left my office and decided to offer Magrib prayers at Dargah Hazratbal. Since it was Friday there was heavy rush of people.
An old man near Regional Engineering College Nigeen asked me for a lift. I placed him on the back seat on my motorcycle and when I reached near Rainawari I told him Uncle where he has to go. He did not reply back. Through his gestures and trembling hands he asked me that he was feeling thirsty. His lips were dry and eyes deep sunken. I offered him water from my water bottle. I took a diary and pen from my bag and told the old man to write his address on it so that I could help him. He refused to drop from my motorcycle. From the card it reflected that he was a retired Deputy Director. He was lost and not able to recall where he lives. I picked one of the contact number from the pocket diary of this old man and located his address.
He was an original resident of Zaldagar and had shifted to new residence at Zakura. I dropped him at his new residence and handed over his belonging to his family members. This old man was suffering from dementia and Alzheimer disease. What hurt me at the end was that family members behaved very rudely with him. Their facial expressions towards this bruised soul were horrible. He silently retired to his room. The rude behaviour of the family members haunted me as a nightmare I took the pen to give visibility to these supressed souls who continue to suffer silently within the impassable walls. Empathy and tolerance is deeply missing in our statistical society.
Alzheimer’s is a neurodegenerative and progressive disease that slowly destroys memory and other functions related to memory. It happens when plagues containing amyloid-beta peptides continue to accumulate in the brain. Peptide aggregation means their formation of one over the other which deforms the cortex of the brain and leads to Alzheimer’s. It is similar to plaque which blocks arteries, affects blood supply and causes cardiovascular diseases. The beta-amyloid deposition and neurofibrillary tangles lead to loss of synapses and neurons, which results in gross atrophy of the affected areas of the brain, typically starting at the mesial temporal lobe. Memory loss or Dementia is the key symptom of Alzheimer’s disease. Inability to recall recent events or discussions is the early symptom of the illness. Some other symptoms of this disease are changes in mood, forgetting the recent information, challenges in solving problems, difficulty in completing familiar tasks at home or work, confusion with time or place, difficulty in reading, judging distance and recognizing colour, losing the track of date and time, misplacing the things or withdrawal from social and leisure activities.
Long back we had a dedicated teacher Shabnum (name changed) in our school whose mother was a victim of Alzheimer disease. In the evening we used to visit the residence of Shabnum madam for taking tuitions. She was as good as our mother and used to feed us with her own hands. One of her students suffered from frost bites during winters. She used to rub an ointment on the feet of his student with her own hands till he felt relieved. Our teacher was almost 50 years old divorced lady without a child. She was living alone with her ailing mother in her ancestral house. I had an opportunity to observe daughter-mother relationship from a microscopic angle. Sara was 69 years of age when she was diagnosed with early onset of Alzheimer disease. Shabnum had been noticing a skewed behavioural displacement in her mother. She had become repetitive and experienced frequent emotional swings quite contrary to her initial cool behaviour.
With tearful eyes and choked voice, Sara told her daughter that she was worried about her memory, she added that she was finding it increasingly difficult to remember things that had happened only moments before. It was a mid-night conversation, Shabnum consoled her mother by saying there is no need to worry, everything will be OK with the grace of Almighty Allah. When the signs of dementia worsened Shabnum felt that there is something wrong with her mother, without wasting time she booked a flight to Jammu and dropped into the clinic of one of the top neurologist of the valley. The doctor confirmed it a sign of Alzheimer disease. Shabnum showed a brave heart and cajoled her mother like a child. Shabnum never got irritated with the erratic behaviour of her mother. She displayed tremendous tolerance and patience to deal with this challenge. Sara plateaued for so many years trying to retain her autonomy but when the decline came, it floored Shabnum. She just fell off the cliff, her life trajectory changed, she was preparing for the next big sacrifice of her life for the sake of her ailing mother. On the prayer mat she was shedding tears, reading one verse from Surah Luqman Ayat 14 (31:14 Quran) “And We have enjoined upon man [care] for his parents. His mother carried him, [increasing her] in weakness upon weakness, and his weaning is in two years. Be grateful to Me and to your parents; to Me is the [final] destination.”
After reading this verse, she discovered her purpose in life was to serve her mother selflessly and that was her biggest victory in both worlds. Sara had become increasingly impaired to the point it was no longer safe for her to live alone at her home. Shabnum received frequent calls from her neighbours that her mother is wandering aimlessly in the locality in a semi-clothed state. Sara had forgotten how to use shower. Her spinning wheel had gathered dust, she had forgotten how to use it, and most often would forget to take lunch when Shabnum used to be at school. Sara would move out of the house without informing and then get lost. Sara started to forget things; she had hallucinations and could hear voices talking to her. She became very paranoid. Persuaded people were trying to kill her. People she previously trusted. She had completely lost her sense of humour. So Shabnum had no choice but to resign from her job to take full care of her mother. She did not remorse but accepted the divine assignment with a grateful and blessed heart. She served her mother selflessly who was in a state of inertia for almost a decade without complaining or displaying an iota of anger. From here mother –daughter duo embarked on a new journey of spiritual bliss, one that involved 24 hours’ attentive care, daily medication rounds. With each passing day Sara became utterly lost in the fog of her own mind that was painful and shocking for Shabnum.
She trusted no one and her personality changed from the kind loving mum she’s always been to a total stranger. She became a danger to herself. To quote Shabnum” Until that point, I had just thought people with dementia were a bit forgetful. It did not sink in until that point the full horror show that watching a mother with this cruel, insidious disease actually entailed. At time, Mummy forgot who I was, and would ask me when I went to see her in her room if I had seen her daughter. Sometimes she addressed me Mala her late elder sister . I came to learn that though she had no concept I was her daughter, she did know me to be familiar and safe.” In the months leading up to Sara’s death she forgot how to walk. As Sara stood on the cliff of the steep descent of final-stage Alzheimer’s, she became progressively fearful and aggressive. She began to have delusions. She would crawl on her hands and knees under benches in search of the demons only she could see. And she would walk about, marching around day and night, in circuits around and around the home, trying all the doors, nattering to herself. With increased immobility came pressure sores. She could no longer nourish herself and would instead require feeding by Shabnum. She could no longer work out how to eat, having no concept of what a knife or fork was even for. Her word-finding ability became non-existent.
Words failed her. She no longer knew how to talk, and communication became more and more challenging. Eventually, as her body finally miscarried her, she became bed-ridden, and Shabnum witnessed Alzheimer’s parting shot. She lost the ability to swallow. And when you can’t swallow, you can’t eat. Her organs started to shut down and she spend a lot of the time sleeping. Shabnum had no idea that Alzheimer’s would cause such physical devastation on her vibrant, youthful mum. Shabnum was with her when she exhaled for the final time, telling her she loved her, and that she wasn’t alone. Telling Sara how proud she was of her, and how brave she had been during this turbulent journey. Shabnum was not sure if she heard her, but felt like she did, because she was pressing her hand gently until the end. Having seen her mother through every stage of the Alzheimer that eventually claimed her life, Shabnum knew for certain that her selfhood remained. Even when words abortive her; even when mobility was gone; even when the ecosystem around made less and less sense to her; she was still Sara a brave, fiery, resilient mother of Shabnum. Before Sara lost the ability to talk, one day Shabnum told her I loved her, she whispered back “me love you too. You are my little sweet girl”. And that is what is left when all else begins to dwindle.
Love is what remains at the end. What lesson we learnt from this case study. Some things are so deeply engrained into us that they are beyond the realms of mental capacity, or cognitive ability. People like to pathologize dementia. They talk about how the person ‘dies’ before they are actually dead. And in some ways that is true, the coherent version of the person you knew morphs into someone different. But this different person, the person they become, is still woven together with the essence of who they were, their core is still there.
Dr Showkat Rashid Wani, Senior Coordinator , Directorate of Distance Education, University of Kashmir