When Alzheimer’s ‘kidnapped’ mum: a daughter’s pain and pleasure

Madam Aishath Moosa Didi was 89 when she passed away. A senior consultant pediatrician, Dr Rukhsana  Ahmed reminiscences her mother’s dementia journey.

Alzheimer’s is a nasty disease. Like a cruel dictator, it kidnapped my mum and held her hostage for a number of years. This gradually took a toll on her memory, her personality, and her ability to carry out daily activities. Watching her being victimized by dementia also caused emotional turmoil, both for me and my sisters.

Mum was an adorable and affectionate person. She was considerate to others, loving and caring for her daughters.  She did her chores without any negativity. She was known among the family for her habit of chewing betel nuts. These nuts and their accompaniments – cloves, cardamon, lime and cut tobacco leaves soaked in water – she kept in a box  known in Dhivehi language as the “dufaa foshi.”  The dufaa foshi was her greatest treasure. It was also the item with which family and friends fondly identified her. All her selfless characteristics made her the most lovable matriarchal elder in the family.  Sadly, it all changed when dementia kidnapped her.

Despite being entrapped, and while Alzheimer’s was taking her backwards down the steps of eight decades of life, the gentleness of her character stayed with her till the end. She spoke softly and calmly in short phrases, which later changed to single words and finally to head nods. Some  words she repeatedly kept saying were “reethikoh”  “nalakoh” “saafukoh,” meaning “beautifully,” “pretty”  and “cleanly.” These words represented mum in her best years. She always liked fine and exquisite things. She dressed beautifully, loved her perfumes,  and took great care in keeping her surroundings spotlessly clean. Because these qualities were so much a part of her nature, she willingly allowed us to shower her and dress her, and she would wait patiently for a spray of perfume when she lost the ability to independently do these tasks.

In retrospect, we realised we’d first noted changes when she was forgetting some of her prayers and needed prompting to complete the recital. Around the same time,  she started talking about imaginary people standing by her bedroom window, watching her. All this was very much out of character. Being the doctor in the family, I personally dreaded to think what this could lead to, but once we had consulted the physician, a diagnosis of Alzheimer’s Disease was confirmed. It was a life-changing day for me. Tears filled me, not because I had to decide to relocate to Malé – from my life abroad – to be with mum, care for her and support the family, but because I could foresee the malicious trap dementia had laid on the path ahead. Given my hectic working life, I had never thought that a day would come when I had to be mum’s carer. Yet unforeseen it came, and it transformed our lives forever.

Watching her in the grip of dementia was painful. However,  caring for her was a pleasurable challenge. I was not a  Geriatrician, and I was no expert on dementia, but I started reading, researching, and networking with colleagues to learn more about this brain degenerative disease.  Unfortunately, at that time in the Maldives, few people knew what dementia was and there was no dementia support group or forum to turn to for help. For example, relatives or friends would ask about mum’s status, and when I’d answer,  “She doesn’t know us (her children),” or “We have to bath,  feed and dress her,” most people would look sad, assume she was in a coma, and wouldn’t know what more to say.

In those moments I took the opportunity to tell them about dementia. I would explain, “She is conscious. It is her memory that is fading, and she forgets  how to do daily tasks, which is part of her illness.”  Others would ask “Isn’t medication helping her?” I would tell them that there is no cure for Alzheimer’s disease, but there are drugs that can control the progression of dementia and add some quality to life.

While improving my caregiving skills, I also have a  better understanding of mum – her character – her ways: aspects I was unaware of, as I had spent the greater part of my adult life away from her. However,  I soon learned that I shouldn’t lose myself and my work despite my primary focus being on mum. This is an important thing for the carer of a loved person with dementia to remember, particularly as it helps keep the emotional rollercoaster at bay. However,  there were times during the daily routine of her hostage years when I felt emotionally drained and isolated because I was witnessing her progressive cognitive decline. Compassion fatigue, combined with a sense of helplessness and hopelessness would pass through me. To overcome it, I consoled myself with the joy of being able to care for Mum when she needed me most. There were also fun times. Mum would randomly say something amusing,  though completely unrelated to the moment, and we would laugh with her.

When I came to her bedside, she had a habit of holding my hands; her look being one of unspoken communication. Her touch always sent an electrifying current of the maternal bond through me. I would silently think: “These were the hands that once carried me, fed me, washed me. They helped me walk and  taught me to stand up and live my life.” Sadly, we were now in reverse gear – my hands doing those same things she did for me, helping her feel comfortable and pain-free. Many times I wondered what would be going through her mind. In those unspoken moments, I could sense she knew I was her daughter although she may not have recalled my name. Indeed, in the end  I understood that it was not the name that mattered,  but the simple act of human touch – a tactile sensation which worked both ways; my hands giving her comfort,  security, and love; her hands transmitting lasting,  unconditional love.

Based on my caregiving experience, I feel there is an urgent need for a dementia support group in the  Maldives. Recently, the Alzheimer’s Society of Maldives has been established here, and there are plans for future support group activities. This forward step will benefit the carers of loved ones with dementia.  They will be able to get information and advice, share experiences and seek help, which in turn will enhance their coping skills and reduce levels of stress.