A father, a daughter and a third wheel: Alzheimer’s. Is called Reminder(s). the podcast of Federico Marino, 34, speaker and OnePodcast contributor. She recounts, with delicacy and depth, the unexpected arrival of a neurodegenerative disease within her family, how it led to undermining and then reinventing the relationships between the components, how it prompted them to explore parts of themselves that they knew. Above all about what this painful but essential journey has taught her, something that she now wishes to share with those who experience similar situations.
Remind(h)er. A Father, a Daughter, Alzheimer’s: The Podcast
An intimate and at the same time universal diary, which speaks of those who lose their memory and also of those who take care of them. A silent army that moves around those diagnosed with dementia, today in Italy over 1 million and 480 thousand people.
What changes in a person’s mind and life when they discover that a family member has a neurodegenerative disease. What happened in your family?
“At first my mother, my brother and I were very scared. We almost hoped that the diagnosis wasn’t exact. Almost as if there was a desire to minimize the problem. My father has always been very loved. A dynamic person, he traveled, spoke three languages. The first signs came ten years ago, he was just over 60 years old. He drove but forgot how to put on the turn signal. He went out by car and walked back. He answered in English. Words escaped him. There was a sort of of denial in him. In the face of forgetfulness, he hesitated hoping that no one would notice. A sense of dignity led him to repress the memory lapses. In that phase I tried to reduce the problem, I didn’t want him to experience it as a failure.
The first tests followed, they diagnosed him with senile dementia with the symptoms of Alzheimer’s. When he realized that the memory was crumbling he was destabilized. I perceived in that moment the fragility and vulnerability of him.
It was a complicated situation to handle emotionally. I’ve always seen mine as invincible. Instead I realized that my father was breakable and he could break. The roles were reversed, with my brother we also had to take care of our mother, dedicated to my father, in what she herself called a ‘golden prison’.”
From your experience, what do you think is useful to do to help a loved one who falls ill?
“You need an absence of judgement. For better or for worse. Oversights are not attributable to a will. You have to try to listen to each other: silences are not the right key to understanding. And then you need closeness, even physical.”
What does a family that has to take care of an Alzheimer’s patient need above all?
“Health services are not always aimed at the pathology. My father, who lives in Rimini, was able to take advantage of home assistance. But the social and health workers who came to our house were always different and this destabilized him, he got very agitated, sometimes becoming aggressive, he was affected throughout the day. Also for this reason, out of respect for his person, my mother wanted to take care of him personally. From diapers to the wheelchair, practical aids are provided. But they are not enough. The water in gel for example: my father can no longer drink liquids but as an Alzheimer’s patient he is not entitled to a supply of water in gel, it belongs to other pathologies. Families that do not have a solid economic basis struggle”.
How important is psychological assistance?
“The doctors who followed my father, from general practitioner to geriatrician, advised us on psychological assistance. There are associations, support groups that organize initiatives. But nothing organic. Each family member must provide for himself. Yet it is fundamental.”
Where did the idea for a podcast about your father’s illness and memory come from?
“I like reading and I sought refuge in reading when my father got sick. However, I discovered that the narrative around this disease was missing, I struggled to find texts that would help me understand how I would feel. It was useful for me To get lost by Lisa Genova (Piemme) who tells the story of the disease from the patient’s point of view. She allowed me to put on the uncomfortable clothes of forgetfulness to overcome the phases in which my father was aggressive. But I also needed someone to explain to me what I was going to experience and to comfort me. Not to hide the reality but to be able to digest it. That’s why I started writing about it. On the one hand I wanted to transfer what I wrote to my father, to read to him what I wrote in an attempt to make his memory last a little longer. An expedient not to win the battle, I know it’s a losing battle, but to make it last as long as possible. On the other hand, I wanted to keep those moments, keep them in mind. And share them. I realized that even trivial things like hearing my father say my name have immense value and I wanted to share this awareness with others.”
What does the podcast title, Remind(h)er, refer to?
“Each episode develops from a story and closes with a reminder. But ‘remind her’ also means: ‘Remember her, dad’. I ask her when I sit on her bed: ‘Do you remember me ?’ In time she has forgotten my name. I wish she would remember just one of her who has something of me.”
In the podcast he says: ‘If memories keep people alive, how will my father survive?’. Has he found an answer?
“You can survive if you have people next to you who love you and who take you back to when you were happy. You feel lost but you have to embrace the new reality in which you live. You have to fight even knowing that you won’t win. You can’t he has to surrender. With my mother and my brother we are grateful for the time he still dedicates to us. When he comes back to us, even with a single word, a ‘yes’ in response to a precise question, there is incredible joy in us We have learned to be satisfied, but not in a negative sense: that ‘yes’ in that moment is everything.”
Remind(h)er is a OnePodcast series in eight episodes