Earlier this year, I was chatting on the phone with my mother, as I often do. We talked about anything and everything; we exchanged the obligatory pleasantries, relayed stories about our days and she even told me tales of her younger years. Then I mentioned an uncle, who was about to turn 80. My mother paused and asked if that meant she was older than he is. Confused, I told her yes, much older. At that, her tone turned serious. There is no way she is older than 80, she protested.
A chill went down my spine. My mother turned 87 this year, and she could not remember. The next day, I spoke to my sister. I did not mention this conversation, but she told me our mother had stopped recognising people, too – acquaintances, friends and even family members. I realised something was not right and I needed to visit my childhood home as soon as possible.
I am in the sandwich generation – I take care of my children and a parent. I live in Abu Dhabi, so when I need to see my mother, I head home to Ghana, in West Africa. When I visit my daughters, I head in the opposite direction, to Canada.
At the time of our phone call, I had not seen my mother in two years. So I planned another trip, this time during Easter. It had been years since I spent an Easter with her and I did not know what to expect. All I knew was that this visit would be different from the last one, very different.
The first thing that struck me after I arrived was how much my mother had aged – she was frail and her voice sounded weak. But she was happy to see me. We had lunch and chatted as if no time had passed. In fact, for the first couple of days, I managed to convince myself nothing was wrong – she was coherent, after all.
By the third day, I was no longer in denial. I was gripped by the fear that she might be showing signs of early-stage dementia. Conversations with her would be flowing, and then, suddenly, she would go off on a tangent. It was subtle, but at the same time jarring. I even developed hives from the shock of seeing how much her cognitive abilities had changed.
She had periods of lucidity, and some lasted for quite a while. I got comfortable talking to her at these times, but, at the back of my mind, I always knew things could change at any minute. I held the conversation for as long as I could, until it slipped. It was like delicately holding an egg, forgetting, squeezing and then watching it break. It was a total roller coaster ride.
We would talk a lot, especially about the past, with my mother repeating stories about her childhood. Sometimes the conversation stalled. It was hard to see her pause, as she tried to find the right word, which was always just out of reach. Sometimes she would raise her hand slightly, as if she was holding on to an invisible wand, attempting to conjure up the correct expression. At times like this, I tried to imagine the inner workings of her mind; I pictured a forest, thick in some areas but with patches of clearing.
She never forgot who I was while I was there, but she could not even recognise my niece one particular day, though she visited often. All three of us had just finished chatting when my niece went to leave, saying goodnight to my mother, who then asked her to introduce herself again.
I searched my memory bank for recollections of the strong woman, the "widow warrior", who at age 44, suddenly found herself raising five daughters alone. She worked hard, making long commutes just so she could feed the family. She had boundless energy. She was a disciplinarian. Now, gone are the muscles in those strong arms. Her knees have also paid the price, only partially supporting her. She has lost the capacity to raise her voice. She smiles more, but has drastic mood swings – little things such as telling her to take medication can upset her. Sometimes, she just sits quietly, possibly pondering the changes in her thinking patterns. She knows what is happening, and even refers to it as "madness".
Her appetite has also changed – she has good days and bad days. On the worst days, the doctor has had to give her nutrition intravenously. When she refuses food, it seems more like a refusal to thrive; her way of giving up, because her world has changed and the confused state of mind is overwhelming.
Thankfully, the doctor explained she has no chronic diseases – that is a tiny ray of light in dark times. And the family is relieved to tell me she is eating better now. We cannot put her in a nursing home – it is not part of our culture – but there is live-in help and my sisters take turns to stay over and look after her. Having people around her is very important now, particularly familiar faces. In a nursing home, she would be among strangers, which is just another form of isolation.
I still call her often. Sometimes she is cheerful, other times not so much. She always remembers who I am and I am grateful for that. I dread the day she asks who is on the line, but I cannot worry about that now – I am taking it one phone call at a time.
The World Health Organisation states that dementia “is overwhelming not only for the people who have it, but also for their caregivers and families. There is a lack of awareness and understanding of dementia in most countries, resulting in stigmatisation, barriers to diagnosis and care, and impacting carers, families and societies physically, psychologically and economically.”
We are still waiting for a formal diagnosis, but I can relate.
