My Mother Has Alzheimer’s and It Has Changed Our Lives

This article originally appeared on VICE Italy.

Everything started falling apart about a year and a half ago, when my mother began talking to the TV. She would tell her favourite anchorwoman, Bianca Berlinguer, that her daughter was an “excellent journalist” too.

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At the age of 72, my mother was officially diagnosed with Alzheimer’s disease. That happened back in 2016, but until that moment in front of the TV, I had naively hoped her diagnosis would remain just words on a medical form. This incident marked a shift: After years of “normal” outward behaviour, she’d entered the mild stage of the disease, the phase when it starts to mess with your sense of reality.

The journey to where we are now was slow and unstoppable. When I was in high school, my mother had chronic severe headaches, an ailment she barely complained about and treated with strong painkillers. Then in 2014, when I was 24, she entered into a cycle of increasingly worrying episodes.

Two years later, her diagnosis turned into “cognitive decline”. She was there, though. She was still herself, apart from a few minor memory lapses, like leaving the moka pot on the stove for too long. “She just needs more rest,” we convinced ourselves as a family. Tests proved us wrong time and time again.

I now know there’s no turning back from the disease. The illness was first described by German psychiatrist Alois Alzheimer back in 1906, when he noticed changes in the brain tissue of a woman who had died after experiencing memory loss, trouble speaking and unpredictable behaviour. Alzheimer’s is now understood as a neurodegenerative disease that causes brain cells to die. It’s the most prevalent form of dementia, a wider term referring to disorders which deteriorate brain functions like memory, thinking, behaviour and emotion.

Dementia usually sets in after the age of 65 and is more prevalent among women. As Europe’s population ages, dementia and Alzeihmer’s affect more and more people throughout the continent every year. According to the NGO Alzheimer Europe, almost ten million Europeans lived with dementia in 2019. That number is expected to rise to 19 million by 2050. Across the world, 50 million are affected by the illness, with the figure projected to rise to 82 million in 2030 and 132 million by 2050. Such numbers have prompted the World Health Organisation to declare Alzheimer’s a “public health priority.”

I spoke about the illness with psychotherapist Dr Ilaria Maccalli, scientific director of the Milan Alzheimer’s Disease Association, a solidarity network helping families and patients during the course of treatment.

“The causes of Alzheimer’s are not precisely known,” she said, “nor is there a cure that can stop its course; only drugs that relieve symptoms or slow them down.” The condition is generally divided into seven stages based on the patient’s ability to function. But “some stages may also overlap, and each patient has a unique experience of the disease,” Maccalli said.

Today, at the age of 77, my mother is in the advanced stage of the disease, which can lead to psychotic episodes and a noticeable deterioration of the quality of life. She no longer talks to TV reporters. They have been replaced by ghosts and shadows, malevolent eyes, strange women ready to hurt her.

For some months now, mirrors have become her worst enemy. When she looks at herself, she sees “the other one” – a mysterious alter-ego intent on taking everything she loves away from her. “It’s called mirrored-self misidentification,” Maccalli said. “Many Alzheimer’s patients think they are younger than their actual age and don’t recognise themselves in the mirror.” Strangely enough, their brain generally has no trouble recognising other people’s reflections.

When I think of what is happening to my mother, to her neural connections, I picture someone doing everything in their power to slow her down. I think of how she struggles to find her own way to do things, of how she confuses the past with the present, of how she constantly meets scary figures totally unknown to me.

The disease mainly affects memory, Maccalli explained, “that part of us where we store a sense of ourselves.” As a result, my mother’s sense of identity and personality is fading away. “We’ve heard so many times from family members, ‘It’s no longer him or her’. And that shows you the extent of their pain.”

Over the years, my surprise at her decline gave way to discouragement and a feeling I was sinking along with her – a feeling that caregiving family members have to come to terms with sooner or later.

In Italy alone, about three million people are directly or indirectly involved in caring for people with Alzheimer’s. In my case, my (retired) father took on the main burden of care, from cooking to cleaning the house. I have two older brothers and two older sisters, and we try to share complementary roles with one another. I live and work in Milan, but I often go home to Lecce, in the south of Italy, because I know spending time with my mother will become increasingly complicated as time goes on.

This awareness has come fairly recently. My denial phase ended in July 2020, when my mum scored nine out of 30 in a medical test called the Mini-Mental State Exam. It’s a simple questionnaire with a few questions and small graphic tasks that probes different aspects of brain function, such as orientation, memory, attention and language. Anything below 24 points indicates some form of cognitive impairment. Her score qualified her as having severe dementia.

Alfia Distefano. Left: black and white picture of young Alfia reading a book. Right: Alfia and her 100-year birthday cake.

The difficulty accepting a loved one’s illness is a shared experience among caregivers, as shown by a 2019 global study conducted by the NGO Alzheimer’s Disease International and McGill University in Canada. It found that 35 percent of caregivers hid the dementia diagnosis of a family member. On top of that, in their 2021 report, the organisation also noted that 46 percent of patients and caregivers identified social stigma as the main obstacle to diagnosis.

As a result of this stigma, the disease takes a particularly heavy emotional toll on caregivers. Your relationships change, and you feel a sense of guilt, of never doing enough, of dealing with something that deeply challenges any normalcy at all times. Everything seems complex and overwhelming even in the most practical and mundane situations, like organising a car ride to a doctor’s appointment.

The bureaucratic side of things can be extremely draining, too. We started the process of claiming disability benefits for my mum in 2020, but our request was only approved a few weeks ago. First, we had to prove she had Alzheimer’s, because her latest diagnosis from 2018 was too old – even though the illness is irreversible.

The process involved supplementary visits and assessments, which might seem innocuous, but can be very stressful for someone like my mother, who sees strangers as a threat. Needless to say, this path does not respect the integrity of the patient, and it’s particularly difficult for those who don’t have the means to jump through procedural hoops.

No matter what, being around someone with Alzheimer’s forces you to work on yourself in a way you maybe never wanted to. The main positive feeling I was left with was compassion. Nowadays, all I need to hear every once in a while is her cheerful voice, on a day when the medication has had an effect on her mood. On her bad days, she struggles to recognise me. And when I am away, my father often begins our phone call by saying, “Today is not a good day.”