I have experienced the feel of dementia while caring for my mother who had Lewy body dementia. A number of risk factors predispose one to dementia. Loss of sense of smell, depression, altered perception, forgetfulness, disturbed sleep, cognitive decline are some of the indications of dementia. Lewy body dementia develops slowly in a period of 20 years. The tricky thing about dementia is that it is hard to identify whether what we are observing is certain personality traits, habits, physical disabilities or an indication of a developing disease; and dementia is incurable when the symptoms become quite obvious. For example, 10 to 15 years back, mom used to be very restless, always in a hurry with limited sense of smell and hearing, with once in a while auditory hallucination.

In her last years, mom had one to two visual hallucinations per year. She was found whispering to herself, which she did to remind herself about a task. Later mom even forgot what she had whispered to herself.

Dementia is not a very simple to comprehend ‘psychological state’. Mom looked different to people and took a while to recognise them. She misperceived conversations and made up stories, which did not exist (to fill in the gaps in her brain). Sometimes, mom’s reactions were slow and sometimes her behaviour was unpredictable. Either way mom seemed to be more self-centred (which she was never before). Mom rushed for one thing or another. She had considerably regressed into the past. Mom seemed confused at times, but mostly paranoid and insecure. Sometimes she thought that the house was set on fire. She used to make a strange loud sound, which was not even a scream.  Mom used to lose things more often than she did before. My mother had a drastic shift in her personality to the extent that her integrity was compromised.  However, she retained the certain social norms in her memory and did not lose her generosity.

I had been a psychology student for more than 17 years and I was interested in Alzheimer’s disease. Nevertheless, I was the last person to believe that something had really gone wrong with mom. Mom’s lung fibrosis and other health conditions worsened her dementia. During the last stages all dementias become Alzheimer’s disease. Mom had sensory hallucinations at the hospital. After physical recovery, mom started experiencing delusions and hallucinations. Since I was not a clinical psychologist, mom’s situation was equally frustrating for me. Mom was unable to accept her cognitive decline (anosognosia), and struggled with gadgets. She had severe mood disturbances and paranoia. There were no doctors or care-homes in Pakistan who could understand mom’s symptoms and accurately diagnose her, while psychological evaluation in UK was very expensive for the foreigners. Our lives became threatening and miserable. My husband used very good distraction methods to relieve mom of her troubles. Mom used to run away from home. At times, I felt scared that she might unintentionally harm anyone, but even I misperceived her. Once she tried to place chocolates under my pillow to appease me, and I mistook her for trying to take away something important from under my pillow. I cannot hold back my tears when I think of the time when mom offered chocolates to children just to get their love. Mom’s condition progressed over time. When we returned to Pakistan, some doctors were unable to diagnose her condition. After CT scan, a psychiatrist kept mom under observation, and prescribed her medicines which helped her relax. Mom’s Parkinson’s symptoms worsened following cognitive decline. It was hard for mom to sit and concentrate on a task for long. Mom became stable after medication but she kept on losing weight. Symptoms like standing in the same posture for a long time, repetitive movements frequently occurred. Scratching, pinching, cutting and tearing off movements provided her some respite. She experienced visual hallucinations. Sometimes she consumed a tissue paper without knowing it. She used to forget the way from the kitchen to the bedroom, did not know why she came to the kitchen and where she was going.

In the last stages, mom could not even swallow anything. My emotions are welling up as I imagine what I went through. I still get nightmares about mom getting out of control. Dementia is going to be one of the greatest threats by 2050 in Pakistan. People often associate dementia with age, and memory, but the fact is that no definite cause of dementia has yet been found. Dementia has worse consequences than cancer, or cardiovascular disease. It is unbearable for dementia carers to see their loved ones suffer. The sufferings of dementia carers extend beyond physical and mental adverse effects. The dementia caregivers are grieving an alive person! Just visualise that your brain pinpoints the problematic area in your body, but when the brain itself is deteriorated who will tell you what happened with you? Who will take care of you and who will suffer the consequences of your disease? You will not be yourself anymore but you will be alive….

Would people remember your past self? As Amina Obaid Khawaja stated, "Promise me, that if I become half of what I am or less, You will remember the person I was."