A woman arrives at a cozy Italian restaurant looking for her husband. When she finds him, she sits down at the table, and together they enjoy a gintonic and a lively conversation. Anyone watching from the outside might envy their complicity, but things begin to get tense towards the end of the evening. After finishing his drink, the man tells him that it has been a pleasure, but that everyone has to go to his house. She surreptitiously exchanges her heels for sneakers. She says goodbye to her husband and pretends to go in another direction, but when she turns the corner she starts running to get to the apartment they have shared for years before him. It’s not much use. Once home, the man has completely forgotten about the date and the life they have shared. He accuses the woman of sneaking into her house and asks her to leave. Desperate, she tries to reason: she shows him her wedding photos, the joint names in the mailbox, but it’s no use. The man gets even more angry. The nights usually end with her crying in the hallway and him locked in her room. But they always start the same, the woman returns to the Italian restaurant to look for her husband. She knows she can always find him there. Her problem is that her husband has disappeared from almost every other place in her life.
“It looks like something out of The unknown dimension” writes Dasha Kiper, clinical psychologist, in Journey to unimaginable lands (Asteroid Books). This is one of the stories that the author has collected to analyze the relationship between people with dementia and their caregivers. The book combines personal cases with scientific studies and cultural references (from Borges to the Teletubbies, to Chekhov) to end up raising more philosophical than medical questions. “When someone’s memory disappears, when their personality and behavior change, who are we dealing with?” the author asks. Where does personality end and symptoms begin? Memory is not merely about remembering, nor memory loss about forgetting, she reflects. Well, that’s where we keep the experiences that make us ourselves. The stories we tell ourselves about who we are and who others are.
Ask. The title of his book is based on a phrase by Oliver Sacks, who defined patients with neuronal diseases as “travelers who travel to unimaginable lands.” Is this an individual or collective trip? Where do your caregivers travel?
Answer. Many times we forget that it is a journey that is accompanied, that at the side of a sick person there is a caregiver. There are two people who go to those surreal, strange and bizarre places. I wanted to write this book to give a neurological framework to caregivers. To tell them: you are not a bad person, that is why you are having a hard time, that is why you are arguing, that is why it is difficult for you to see the illness and not your mother. And this doesn’t make you bad, it makes you human. This trip to imaginary lands is made by two people, but at the same time it is a lonely trip and can be disorienting. It’s surreal, but at the same time familiar.
P. Many of the conflicts portrayed in the book respond to previous family dynamics. They are stories about dementia and family relationships.
R. Yes, many of the discussions you have with the patient are discussions you have had before. On the one hand, it is assumed that there is a profound neurological change in the patient’s brain. But on the other hand, this person is still as loving, irritating, and exhausting as the person you’ve always known. Memory loss seems like something very simple, a medical diagnosis: “OK, the person doesn’t remember.” But if you apply it to a family dynamic, everything changes. If you apply it to a father who was too harsh on his child, other dynamics come into play. In this case it is easy for him to despise his son, to reproach her for never visiting him. This may be a manifestation of memory loss, but also the normal behavior of a father for whom nothing his child does is enough. So in many ways, the fights you have with a family member with dementia feel eerily familiar.
Memory loss seems like a very simple thing, but if you apply it to a family dynamic, everything changes.
P. And this makes it difficult to distinguish between pathology and patient. Symptoms and personality are confused…
R. Many times I see medical professionals make the mistake of telling caregivers, “That’s not your mother, that’s her brain,” and that’s not just naive and binary. It’s fake, because how the hell do you know? You are a doctor, but you don’t know what relationship the patient has with the caregiver. Maybe your mother has said something unpleasant to you, but it’s the kind of thing your mother has always said to you. The hardest thing is that you cannot know where the person ends and the disease begins. When a doctor tells you “it’s her brain, not your mother” what he is really telling you is that you shouldn’t be so hard on her. But that’s not the way we are connected. We are not programmed to understand the brain as something innocent, as a failing body. Human beings have a very intuitive understanding of cancer, because the problem is the body. When bodies fail, we understand. But when minds fail, we find it very difficult to get rid of concepts like free will or responsibility. It is very difficult for us not to demand responsibility. Oliver Sacks refers to the pathology and the patient as a marriage, they are intertwined. And I think it’s a very nice way to express it. But I would say that they can become a trio: the disease, the patient and their caregiver. If a father has dementia, it will manifest differently with one daughter or another depending on the individual relationship he had with them before. Daughters will receive different versions of their father. This disease takes many forms.
P. You say that caregivers are not saints.
R. Not only are they not, but many get angry when you tell them. Because it is a simplification that does not allow them to be human. It is as if they are expected to always be self-sacrificing, generous and kind. Things are not like that. We expect caregivers to be rational and calm because they are healthy, but our brains are programmed to imitate other brains. Therefore, if someone is angry, it is very difficult for us not to capture this feeling and get angry too. Ultimately, it is not that the healthy brain trumps the sick brain. We are at their mercy as much as they are at ours. And I think this is something very surprising, that this distinction between the healthy brain and the unhealthy brain is not as clear as we would like.
When bodies fail, we understand. But when minds fail, we find it very difficult not to demand responsibility.
P. In your book, the majority of the caregivers you talk to are women…
R. There is a social expectation that women take care of this, as with any other caring role. It is even expected that it comes naturally to us, because it is understood that we are breeders by nature, which is absurd. It’s absurd when mothers are told that, but it’s even more absurd with dementia, because no one is emotionally prepared to deal with this disease. It goes against our nature. There is a social expectation that this should be natural for women. “Of course they should bring their mother to live with them at home.” “Of course they should quit their jobs.” “Of course they should give up their social life.” “And they have to accept all this without any resentment.” And this means that dementia is understood as their individual problem, and not as our social problem.
P. I would like to explain a case that happened in Spain a few weeks ago. A man died in his house, due to a domestic accident. He was the caretaker of his mother, a dependent elderly woman who died a few days later of starvation. The bodies were not found until weeks later, when neighbors alerted them to the smell. We know that illness and old age can isolate a person, but do they have a contagion effect on the caregiver?
R. Old age isolates, dementia isolates. And in my opinion, caregivers can become even more isolated. It is a depressing illness. With other illnesses, people are supportive, but with dementia caregivers see how friends and family are too uncomfortable and depressed, so they leave. With cancer you can feel sorry for the patient, you share a reality and concerns. But with dementia you are alone, its symptoms are extremely isolating. The patient and the caregiver live in two different realities. Biologically, we are not programmed to experience stress alone, our instinct is to share it. Therefore, loneliness for a caregiver is actually the biggest risk…
There is a social expectation that this [el cuidado de enfermos de demencia] It should be something natural for women. Of course they should bring their mother to live with them at home. Of course they should quit their jobs. Of course they should give up their social life.
P. What happens when a patient dies and the caregiver must resume their life?
R. Some people really feel free, they can get back to their lives. And that is a positive thing, it is good that it is like that. But many times, since they are no longer in a constant state of emergency, of managing crises, they have time to think. And many sink into guilt. They begin to review their reactions, all the decisions they made and ask themselves: “Was that the right decision?”, “Should I have done it this way or that way?” As a caregiver, you have to make many ethical decisions. And when everything happens, you have time to reflect and punish yourself. They are like soldiers returning from war. It’s all very well returning to normal life, but your brain and biology are still in fight mode. They have learned to deal with a strange and ridiculous environment. And when they dive back into normal life there is a lot of trauma and a lot of flashbacks. It’s like living with one foot in each reality.
P. You dedicate the book to your parents. Have you had to act as a caregiver for them?
R. No no. Luckily, my parents do not have any type of cognitive impairment. I dedicated the book to them because they supported me a lot and are interested in what I do, and I know that is a great gift. I ran a group of caregivers for a long time and they were all about my age, millennials. And many had a very difficult relationship with their parents. When they reached certain vital milestones in their adult lives, when they got married, had children, or had success at work, they couldn’t share that joy with their parents and desperately sought that validation. While writing this book I kept all of this in mind. The gift that your parents can still share life with you. Let them be there and recognize what you are doing… When you work in this field you value these little things… having a cup of coffee and enjoying a conversation. Know that you are living in the same reality.