“There was a deep ache in knowing that grief isn’t just in the loss of someone who’s gone, but also in an aged mother, who is looking into your eyes, asking you who you are. I was losing her bit by bit, but she was right in front of me”
“We would usually see her forget her house keys when she would leave for work. Or forget to have breakfast. Or forget to turn the TV off at night. We let it slide because how seriously do you even take that? But then, my father passed away.”
The morning after her father’s death, Khalida scanned a living room full of grieving family members and friends, and asked, “What happened?”
“I went to her because I thought she was just in a state of temporary shock and would be better if she had something to eat. When I went close and held her by the shoulder, she shrugged it off and asked me who I was.”
Shazia was hit with the devastating realisation that she had lost her parents in the span of a day. Even after her repeated attempts at reminding her, Khalida refused and said, “I never had a daughter.”
It was after some time that Khalida was diagnosed with acute dementia, or rapidly progressive dementia (RPD).
RPD is a dramatic and noticeable decline in psychological human capacities. This impairment causes severe memory loss, visual and auditory hallucinations, and eventual disorientation, where ordinary things in life become a challenge to understand.
As it is a progressive disease, it is associated with feelings of immense grief to watch a person’s cognitive abilities fade with every passing day, and the devastating reality check that it can seldom be stopped.
As the global ageing population grows, discussions around age-related diseases like RPD become more relevant. The eventual upsurge of isolation and paranoia is a common psychological change in patients with dementia.
The onset of this disease is painful for the family members and paints a bleak picture of the uncertainty of life, even when alive.
Over the years, Shazia found growing comfort in this complexity as Khalida grew emotionally attached to her even though she did not recognise her.
Living together, sharing the same bed, bathing her, and combing her hair helped Khalida to hold strongly to the trust she had grown in Shazia, and she began to address her as “her old friend”.
Even though they were getting used to the quiet bond they shared, Shazia recalls the heartache she would experience in the crippling visuals of her mother screaming at TV anchors because she thought they were talking to her, or when she could no longer tell if she needed to use the restroom, or when she forgot her own name.
It was the disbelief that someone once so sharp and eloquent could lose all sense of self — and it’s your mother.
A grim element linked to acute dementia in parents is the tragedy of reverse parenting. This role reversal is profoundly traumatic as the child watches their parents’ memory of them completely disappear, shifting the dynamic between parent and child, leaving them to grieve for someone who is physically present.
There is a fiercely relentless grief attached to looking after an aged parent who has lost all memory of their child and may make the child feel unseen and indistinct.
The erosion of memory may lead to a loss of connection, and with it, the devastating truth that the warm nurturing of the mother has been detached from the child’s life. The responsibility of moving the pedal lies on the child, whether they are ready for it or not.
Shazia admits to acting as if she were unwell to nudge her mother’s maternal instincts, hoping it would spark a memory of her. She admits her overwhelming desire to be recognised by her mother.
“Suddenly, I would hear panic in Mama’s voice. And then one fine day, she said, “Shazia, are you okay?” I heard her take my name. Even though she would forget it seconds later, it was still strange to me that a part of her was still a mother, even if she didn’t know that.”
The Journal of Clinical Nursing issued research in 2018, which stated the anxieties of “anticipatory grief” among children who take care of their parents with dementia.
This type of grief evokes a sense of loss within the family members even before the passing of the patient. It is a form of mourning, but for someone who is present in sight. The intensity of this grief is so large that children experience the death of their parent not once, but twice.
Consumed by a loss felt long before the final goodbye, Shazia says, “I have forgotten what she and I were like before those seven years. She was my mother, and I was hers.”
Featured image by Shazia Naheed.