By Dahlia Jallad
Health Educator
Expert Contributor / Family Flavours Magazine
Sitting on the plane, looking out the window at the vast Pacific Ocean on my journey from California to Amman, I believed I had already endured life’s greatest losses; Just one month earlier, I had buried my husband after he lost his battle with cancer.
I left behind my adult children, my career, the comfort of my home and the friends who had carried me through unimaginable grief as I returned to take care of my 85-year-old mother, who was living with Alzheimer’s and needed me back in Jordan.
As the plane crossed the ocean, I convinced myself that nothing could be harder than what I had already survived — I was wrong.
I returned to Jordan believing I was prepared for the road ahead. I wasn’t.
Unprepared
What awaited me was unlike anything I had ever experienced. Caring for someone with Alzheimer’s brought a new challenge every day, a new question and a lesson no one had prepared me for.
A loved one with Alzheimer’s slowly slips away; every sunrise marked another quiet loss and every day carried a different kind of grief.
Understanding Alzheimer's
One of my earliest realisations was that Alzheimer’s is far more than memory loss. Like many people, I assumed it simply meant forgetting names or appointments. I couldn’t have been more wrong. Alzheimer’s can profoundly alter the way a person experiences reality.
Hallucinations
My mother began seeing snakes slithering across the floor, dolphins swimming through the living room, strangers dressed in unusual clothing and children playing in empty corners of the house.
At other times, she heard voices calling her name, smelled smoke when there was none, complained of a bitter metallic taste in her mouth, or felt insects crawling on her skin. What I was witnessing was not simple confusion.
These were hallucinations, a common symptom of Alzheimer’s in which a person experiences false sensory perceptions. She was seeing, hearing, smelling, or feeling things that were not actually there. To her, they were completely real.
Delusions
At the beginning, I spent countless hours trying to convince her she was mistaken. I would open her drawer to show her the bracelet was right where she had left it, or point to the empty street outside, hoping logic would reassure her. It never did. To her, these beliefs were undeniable.
These were not hallucinations. They were delusions, another symptom of Alzheimer’s. Unlike hallucinations, which involve sensing things that are not there, delusions are fixed false beliefs that remain completely real to the person experiencing them.
Delirium
There were days when my mother experienced a sudden change in her awareness and overall thinking. She would repeatedly ask what day it was or begin speaking gibberish.
Her alertness and confusion would fluctuate from hour to hour and these episodes could last for several days. This was delirium, a temporary impairment of the brain’s overall function. Unlike Alzheimer’s, which develops gradually over time, delirium comes on suddenly, almost as though a switch has been flipped. It is abrupt, dramatic and frightening.
Delirium can be triggered by something as simple as a urinary tract infection, dehydration, constipation, certain medications, a tooth abscess, or even the stress of a new environment.
I was fascinated to discover that these sudden episodes often signaled that something else was wrong in my mother’s body rather than a sudden progression of her Alzheimer’s. How could a bladder infection make someone see snakes on the floor?
The Alzheimer's Brain
A healthy brain has remarkable reserves that allow it to cope with physical stress. An Alzheimer’s brain has already lost many of those reserves. When an infection or illness occurs, the areas responsible for attention, memory, vision and interpreting reality become even less efficient. The brain begins filling in missing information incorrectly.
Instead of recognising a shadow on the floor, it may interpret it as a snake. Instead of seeing a coat hanging behind a door, it may see a stranger. The person is not imagining it or pretending. Their brain is genuinely constructing a different reality.
Once the infection was identified and treated, the change was just as remarkable in the opposite direction. Slowly at first, then more clearly, she began to return. It was as though someone had flipped the switch back on.
When The Three Collide
What makes all of this especially confusing for caregivers is that delirium, hallucinations and delusions can all occur at the same time.
I found it helpful to think of the brain as a computer: A hallucination is like the monitor displaying an image that isn’t really there. A delusion is like the software reaching the wrong conclusion despite having the correct information. Delirium is when the entire computer malfunctions and everything becomes slow, disorganised and unreliable.
Sundowning
My mother could seem relatively settled during the morning and afternoon, only to become more confused, restless, or distressed as evening approached.
Her hallucinations sometimes became more vivid and she could become increasingly anxious at sunset.
This is known as sundowning, a term used to describe the increase in confusion, agitation, anxiety, or other behavioural changes that some people with Alzheimer’s, and other forms of dementia, experience in the late afternoon or evening.
Once I began recognising the pattern, evenings became less mysterious. I tried to keep her surroundings familiar and calm, close the curtains before darkness changed the appearance of the room, turn on the lights early and avoid unnecessary stimulation late in the day.
Stepping Into Her World
After understanding all this, it became clear that it was pointless to keep correcting my mother’s reality. At first, I spent hours trying to convince her she was mistaken. Logic never worked.
Eventually, I realised I wasn’t arguing with my mother; I was arguing with Alzheimer’s. The disease taught me to stop correcting her reality and start responding to the disease itself. Instead of saying, “No one stole your bracelet,” I began saying, “Let’s look for it together. I’m sure we’ll find it.” My goal was never to reinforce the delusion, but to comfort the fear behind it. Once she felt understood, her anxiety often dissipated within minutes.
I no longer tried to convince her there were no fish swimming across the floor. Instead, I would pretend to catch them and tell her I was frying them for lunch. She would smile, sometimes even laugh and for a brief moment Alzheimer’s seemed to disappear.
I began stepping into my mother’s reality instead of constantly trying to pull her back into mine. I befriended what she saw when hallucinating. Those small moments of joining her world brought us a kind of peace that facts and logic never could. They reminded me that joy can coexist with Alzheimer’s. Sometimes the greatest act of compassion is not insisting someone enter your reality, but having the courage to enter theirs.
Communicating Differently
One of the biggest changes I made was to stop asking open-ended questions and instead always give only two options or yes/no choices.
Questions like “What would you like to eat?” or “What do you want to wear today?” often confused my mother and left her unable to answer. Alzheimer’s affects memory, language and decision-making, making it hard to process many options.
Instead, I began simplifying everything by giving two options or framing questions as yes or no. I would ask, “Tea or juice?” or “This one or that one?”
Rethinking Honesty
My mother often asked about her parents, both of whom had died many years earlier.
At first, I answered truthfully, but each time I spoke those words, she reacted as though she were hearing the news for the very first time. The heartbreak was immediate.
Why would I repeatedly place someone already living with so much confusion through that pain when a gentle reassurance could bring her comfort instead?
From then on, when she asked about her parents, I simply smiled and said, “They’re doing well.” So did she.
Alzheimer’s taught me that compassion is sometimes found in choosing peace over truth.
The Impact of Change
Some of the most disruptive things turned out to be the most ordinary.
I used to think a change of scenery would lift my mother’s spirits. Moving her from her bedroom to the garden for some fresh air, or even from her electric bed to another room, seemed harmless.
Instead, she became acutely confused. Her physician explained that even seemingly minor environmental changes can trigger delirium in someone with advanced Alzheimer’s. A hospital stay, a different bedroom, or sometimes simply spending time in another part of the house can overwhelm a brain already struggling to interpret its surroundings.
What seemed insignificant to me could feel enormous to her. Stability became as therapeutic as any medication.
Living with Alzheimer's
Being an Alzheimer’s caregiver in an Arab family brought its own unique challenges. Dementia is still misunderstood within many of our communities. Too often people simply say that an older person has “lost their mind.”
At the beginning, I found myself hiding my mother from visitors because I wanted them to remember the intelligent, elegant woman she had always been.
Then something changed: Instead of keeping her away from family gatherings, I brought our traditions to her room. Coffee, tea, sweets, conversations and laughter all took place beside her bed.
To my surprise, she often became more engaged. She smiled, welcomed guests, thanked them for visiting and enjoyed simply listening to the conversations around her.
It dawned on me that I had been protecting myself from other people’s opinions more than I had been protecting my mother.
Alzheimer’s had taken away many of her memories, but it had not taken away her dignity.
Navigating Opinions
Living in an Arab society also meant learning how to navigate the opinions of others. Family members, neighbours and even distant acquaintances generously offered advice.
Some questioned the medications, others recommended home remedies, while some implied that if I simply cared for her differently, she would improve. Most meant well, but managing everyone’s opinions sometimes became almost as exhausting as managing the disease itself.
Preparing Before It's Too Late
If your parent has recently been diagnosed and is still cognitively able to understand and willingly make legal decisions, talk openly about arranging a power of attorney. It is an uncomfortable conversation and one many families postpone because it feels premature or emotionally difficult.
By the time I needed a power of attorney, my mother no longer had the cognitive and legal capacity to grant one. Something as simple as transferring a mobile phone line from her name to mine became impossible.
The same was true medically. I waited too long to have my mother’s hearing tested to ensure her hearing aids were properly calibrated. The test required her to press a button each time she heard a beep, something she could no longer understand how to do.
We were left not knowing whether her hearing aids or glasses could have been adjusted to improve her quality of life. Just a few months earlier, when she was cognitively able, she would have been able to complete both tests.
Alzheimer’s doesn’t only take away memories. It gradually takes away the ability to participate in the very decisions and assessments that could make life easier. Looking back, I wish someone had told me that preparing for Alzheimer’s isn’t only about medications and medical appointments.
The Emotional Journey
Perhaps the hardest part of caregiving was confronting emotions I was almost ashamed to admit.
There were days I felt angry. Days I felt resentful. Then I felt guilty for feeling either.
I resented Alzheimer’s for stealing the life my mother deserved. I resented the life it had quietly stolen from me as well. While friends were traveling, advancing in their careers, or simply enjoying uninterrupted sleep, my days revolved around medications, diapers, blood tests, urine cultures, doctor’s appointments and interrupted nights.
It took me a long time to understand that my resentment was never directed at my mother. It was directed at the disease that had changed both our lives.
Loving someone deeply and feeling emotionally exhausted can exist at the same time.
Our culture teaches us that caring for our parents is both an honour and a responsibility. I believe that wholeheartedly. But I also came to understand that this beautiful value can unintentionally silence caregivers.
We hesitate to admit we are exhausted because we fear sounding ungrateful. We hide our loneliness because we worry it reflects poorly on our love for our parents. We convince ourselves that asking for help means we have somehow failed.
I eventually realized that acknowledging my struggles did not make me a less devoted daughter.
Grief
Perhaps the hardest realisation was that I was grieving more than my mother. I was grieving the daughter I used to be. The daughter who called her mother for advice instead of becoming the one making every difficult decision.
Alzheimer’s slowly reverses the roles until one day you realise you have quietly become the parent.
It also taught me that caring for myself was not selfish. Like the safety instructions we hear before every flight, caregivers must put on their own oxygen mask before helping someone else. Taking a walk, enjoying a quiet cup of coffee, watching a movie, journaling, or simply catching up with neglected friends did not make me a bad daughter.
Caring for myself ultimately became another way of caring for her.
What My Mother Taught Me
Looking back, I realise I had two teachers throughout this journey. The first was medicine. Physicians, nurses, researchers and medical textbooks taught me about neurons, hallucinations, infections, delirium and the science behind Alzheimer’s disease.
My second teacher was my mother: She taught me patience when words failed, compassion over correction, dignity in the face of decline and that sometimes the greatest act of love is not bringing someone back into your reality, but having the courage to step into theirs.
You can contact Dahlia Jallad at [email protected].
