A year and a half ago I heard my mother talking to the TV. She told her favorite presenter that her daughter was also an “excellent journalist”.
In 2016, when she was 72 years old, my mother officially became the Alzheimer’s disease established. Until she started talking to the TV, I hoped her diagnosis was only on paper. But the TV incident changed everything: After years of ‘normal’ behavior, she entered the mild phase of the disease, the phase where the disease starts messing with you sense of reality.
The process we are in now is slow and unstoppable. When I was in high school, my mother had severe, chronic headache, an ailment she hardly complained about and treated with strong painkillers. In 2014, when I was 24 years old, her doctor visits became more frequent, and more serious in nature.
Two years later, she was diagnosed with “cognitive decline.” She was still herself in that moment, except for a few moments, like when she forgot the coffee pot on the stove. “She just needs more rest”, we kept saying to each other as family. But the tests showed time and again that something more was going on.
Now I know you can’t recover from Alzheimer’s. The German psychiatrist Alois Alzheimer first described the disease in 1906. He saw changes in the brain tissue of a deceased woman who had exhibited memory loss and speech impairment and unpredictable behavior during her life. Alzheimer’s is now seen as a neurodegenerative disease in which brain cells die off. It is the most common form of dementiaa broad term referring to conditions that brain functions such as memory, thinking, behavior and emotion.
Dementia usually occurs after age 65 and is more common in women. As Europe’s population ages, each year more people on the continent are affected by dementia and Alzheimer’s† According to the NGO Alzheimer Europe, in 2019 almost ten million Europeans with dementia. In 2050 there are expected to be 19 million. Suffering all over the world 50 million people to the disease, a figure that is expected to rise to 82 million in 2030 and 132 million in 2050.
Due to the strong increase, the World Health Organisation Alzheimer’s as a public health priority.
I talk about the illness with psychotherapist Dr. Ilaria Maccalliscientific director of the Milan Alzheimer’s Disease Association† This is a solidarity network in Italy that supports families and patients during treatment.
“The causes of Alzheimer’s are not exactly known,” she says, “and there is no treatment that can stop the disease, only drugs that relieve or delay symptoms.” Alzheimer’s knows seven stages, which are linked to the patient’s ability to function. But “some stages can also overlap, and each patient has a unique experience of the disease,” Maccalli continues.
My mother, now 77, is now in an advanced stage of the disease, which can lead to psychotic episodes and a deterioration in quality of life. She no longer talks to reporters on TV. Now she speaks with ghosts and shadows, evil eyes and strange women who want to hurt her.
For several months, mirrors have become her worst enemy. When she looks at herself, she sees ‘the other’ – a mysterious alter ego who wants to take everything she loves from her. “This is a delusion,” says Maccalli. “Many Alzheimer’s patients think they are younger than they actually are and they don’t recognize themselves in the mirror.” Strangely enough, their brains generally have no trouble recognizing other people’s reflections.
When I think about what happens to the neural connections in my mother’s head, I want to do everything I can to slow down her disease. She can no longer do things her own way, all the time she meets scary figures who are completely unknown to me and confuses the past with the present
The sickness mainly affects memory, explains Maccalli, “that part of us where we store our idea of ’self’.” This blurs my mother’s experience of identity and personality. “We’ve heard so many times from relatives, ‘It’s not him or her anymore’ and that shows how great their pain is.”
Over the years, my amazement at her decline gave way to discouragement and a sense of drifting along with her—a sense of loss that caregivers sooner or later have to accept.
The disease is primarily hard on the person who suffers from it, but it also puts a heavy burden on caregivers. Worldwide, the costs of formal and informal care for Alzheimer’s patients are estimated at 775 billion euros† My (retired) father has the biggest care task taken upon himself, he cooks and cleans the house. I have two older brothers and two older sisters, and we try to share things as much as possible. I live and work elsewhere, but go home often because I now know that spending time with my mother will become more and more complicated as time goes on.
This realization came late. My denial phase ended in July 2020, when my mother scored nine points out of thirty in a medical test that Mini-Mental State Exam is called. It is a simple questionnaire with a few questions and visual commands. It can be used to measure brain functions, such as orientation, memory, attention and language. Anything below 24 points indicates a cognitive impairment. Her score qualified her as severely demented.
Most caregivers experience emotional pain and find their loved one’s illness difficult to accept. This emerges from a 2019 global study, conducted by the NGO Alzheimer’s Disease International and McGill University in Canada. It found that 35 percent of caregivers keep their loved one’s Alzheimer’s diagnosis a secret. This also has to do with the social stigma surrounding dementia, which has a heavy emotional impact. A 2021 report by the NGO Alzheimer’s Disease International found that 46 percent of patients and carers found the social stigma surrounding dementia to be the most important barrier to accepting a diagnosis.
In addition, the bureaucratic side can be very tiring for informal carers. We ourselves started applying for benefits for my mother in 2020, but our application was only approved a few weeks ago. First we had to prove that she had Alzheimer’s, because her last diagnosis from 2018 was too old – even though it is an incurable disease.
We also had to go to several appointments and assessments with my mother before the benefits were awarded, and that may sound harmless, but it was very stressful for her, as she sees strangers as a threat. This approach does not respect the integrity of the patient.
The closeness of an Alzheimer’s patient in your life forces you to work on yourself in a way you may never have envisioned. The main feeling I got from it was compassion. Nowadays I feel good to hear her cheerful voice every now and then, on a day when the medication positively influences her mood. On bad days she hardly recognizes me. And when I’m gone, my dad often starts our phone conversation with the words, “Today wasn’t a good day.”
“You’re grieving someone while they’re still alive,” Maccalli says, and I totally agree. It’s all so confusing because this loss comes at a complicated time in my life. I’m about to move to a new city and change jobs. This makes me feel insecure. I will never be able to invite my mother to dinner in my new house, or share my passion for plants and cooking with her.
On the other hand, I have found new ways to connect with her. As the disease progresses, she has forgotten how to cook. But on the phone – during her lucid moments – she still tells me what dishes she will cook for me the next time I visit. I often send her flowers, which she loves, and she says to me, “These flowers talk.” When I visit her, we listen to music together. The last time we listened to “Amelie’s waltz” by Yann Tiersen, and I was moved when she said, “It’s nice to be together like this.”
Maccalli says the brains of Alzheimer’s patients still process information on an instinctive level, even though some memories are missing. “They know who is important,” she says. “Emotionally, they realize that they have a bond with a family member.”
Maccalli may not know, but her words are a huge relief to me.