Sylvia Wynter's Dream

They forgot but I can’t help but Remember: The Thoughts of Your Average 16-year-old (now 21-year-old) Dementia Caregiver

Tori carried the weight of a burden that not even Jamaica’s warm breeze could lift. Tori’s grandfather, Harold, was slowly slipping away into the depths of dementia. Tori had never thought she would be here, one day, taking care of her grandfather. While growing up, Tori and her grandfather didn’t exactly get along. Her grandfather had always been distant, consumed by his own demons and regrets. Their interactions were limited, filled with awkward silences and unspoken words but life has a way of turning tables, and now here she was, one of his primary caregivers as he suffers from dementia.

His once-clear mind had become a jigsaw puzzle with missing pieces, leaving him trapped within the labyrinth of his own memories. At first, it was manageable. Tori’s mother would cook him meals, they would both help him bathe and make sure he took his medication on time but as the days went by, his memory started to fade, and he became more and more dependent on the two of them. He would forget where he put things, who people were, and even sometimes forget their names. It was heartbreaking for them to see this strong, proud man reduced to such a state, especially Tori’s mother, Sarah, who was plagued with memories of a very different man than the one that sat down in front of her today. 

She honestly could not remember what her grandfather was like before dementia took him away from her and isn’t that so ironic? That she is unable to remember him before he started to lose his own memory but the image of him now suffering from this mental disability will be engraved in her mind forever. 

Nowadays, Harold would come out of his bedroom wearing three or four shirts at once and sit on the same old rickety chair in the living room watching the same old programs on TVJ but not understanding them, waiting for his breakfast, lunch and dinner to come to him. 

It seemed like just a flash and Tori’s world was turned onto its head. She suddenly found herself acting as a caregiver – something that she was unprepared for and especially being a teenager who was in her final high-school year, Tori had her desires for freedom and independence but after the sudden and unexpected loss of her mother, she soon realized she had no choice than latching on to her grandfather. The strains of caregiving became intertwined with the delicate threads of her own life.

Harold’s mind would wander through the fog of forgetfulness. He would gaze at his own daughter with vacant eyes, unaware of the bond they once shared. These were the moments that Tori could see tested her mother’s resilience, as she struggled to maintain her composure through the waves of sadness that washed over her and the hits just came on coming when in the same year, Tori’s grandaunt, Doris, who had lived in Florida ever since she could remember was taken from her home to Jamaica after she was diagnosed with dementia.

Memories, once vivid and cherished, became blurred and fragmented, like Doris was trying to grasp the sand slipping through her fingers. Don’t get her wrong though – it wasn’t that Tori didn’t want to help her – she did but it was hard for her to muster up any strength when after all those months of dealing the stress with her grandfather, she now had to take on her grandaunt. It also wasn’t like Tori was alone. She had her mother, their helpers and other relatives but it was still hard.

Doris had always been a formidable woman who had always been quick to judge, slow to forgive and stubborn. You would think that this woman was one of those people who preferred dying than asking for help, which was obvious that she herself even knew she needed. As a result, there was no shock upon her developing dementia and refusing anyone’s assistance. Tori’s family tried to intervene, but Doris wouldn’t hear of it.

Though, she often would say,” I can still take care of myself”, she actually could not recall the last time she had gone shopping by herself nor the day of the week.

She was one of those types of individuals who believed that they had all the answers which would always result into a debate or argument. Doris’ dementia had taken away her sharp tongue and critical eye, leaving behind a frail, confused old woman who didn’t recognize her own family members.

Over time situations kept getting worse. Doris began losing the skills of cooking, cleaning, and other basic things that she was able to do before, yet she still failed to let other people into her life. She was resistant to their help, resentful even. She would accuse any and every oneof trying to control her, of trying to make decisions for her. It was like they were taking away her independence as a single mother, as a career nurse, as an avid member of her neighbourhood watch, as a person. In Doris’ defense, Tori could see her point of view, that she did not want to get treated the way she was sure everyone saw her – as a shell of her former self.

Doris’ condition had begun to deteriorate rapidly, leaving her confused and forgetful. She would often wander off, get lost in familiar places, or, just like Tori’s grandfather, accuse others of stealing from her. Tori tried her best to be patient and understanding, but it was hard to suppress her frustration whenever Doris would refuse to eat or take her medication. Doris would also become agitated and paranoid, accusing others of trying to poison her. It was emotionally draining and exhausting, both physically and emotionally, but Tori could see that her mother felt a deep sense of obligation to her grandaunt.

While Doris had moments of being confused or afraid, Tori was able to help her get back to where she felt safe once again in everyday living environment and as the days turned into weeks, and the weeks turned into months, and with each passing day, Doris would sometimes rediscover hidden depths within herself. 

Ultimately, Tori realized that care was more than just giving physical help, rather an emotional support and comprehension and that families are usually never simple. It is at times, unfortunately, by illness, loss and strife that they are brought together but no matter what happens, blood ties us forever.