“Being a caregiver is like being an anthropologist on Mars.” A caregiver of an Alzheimer's patient said this to Dasha Kiper and she found her phrase so accurate that she used it at the beginning of her book, Journey to Unimaginable Lands (Asteroid Books). In it, Kiper, who is a clinical psychologist but also cared for an Alzheimer's sufferer who was a survivor of the Holocaust, accompanies those who accompany them to that unknown land that is the sick brain.
“It is not easy to live with a person who flagrantly disregards the rules of time, order and continuity. Therefore, instead of offering clichés or redemptive lessons, I intend to normalize the denial, anger, frustration and helplessness of the caregiver,” the author proposes from the beginning. Kiper, born in Russia but raised in the United States, has been advising support groups for caregivers of people with Alzheimer's for years. She transfers many of these stories to the book, in which she positions the caregivers almost as the main victims of the disease, even above the person who suffers from it.
“I think that's the right word, victim,” he clarifies in a Zoom conversation. “Our brains are biologically designed to be wonderfully and desperately dependent on other people's minds. This is how we have evolved. If one brain breaks down, the other is going to break down too. If one brain loses its sense of reality, the other will also be desperate.”
I'm sorry to say, but caregivers of people with Alzheimer's are often even more affected by the disease, because those who suffer from dementia sometimes have the advantage of forgetting and thinking that everything is fine, but caregivers are never free of the disease. They remember the fight that took place yesterday, they remember the hurtful things that were said to them. One of my caregivers told me: “everyone asks me about my husband. He's fine. "I'm the one who's going crazy." The psychologist often reminds caregivers: “You know that the patient has a much better social life than you, right?”
Kiper's text, which owes much to the medical literature of Oliver Sacks, whom he often mentions, poses in several different ways “the caregiver's dilemma” – if the person I love and care for is no longer her, is she? Who am I taking care of? – and calm and preventively forgive all those Alzheimer's Sherpas: if what they do is so difficult for them, it is not because they lack empathy, patience or any other of the hundreds of emotional resources necessary to do this task, it is because their Brains are designed like this, to create order in chaos.
One of the stories he uses to illustrate this in the book is that of James, a son who cares for his Alzheimer's-stricken mother and who can't help but feel resentful when she is lackadaisical and ungrateful for his efforts. James brought this up in a support group and all the other participants turned on him and explained that it wasn't her who was ungrateful, it was the illness.
“In reality, James's mother had always been emotionally abusive towards him. As social animals, we are not predisposed to treat other minds as if they were not to blame for anything. We have many intuitions that make us expect things from others and it is hard to put that aside even though intellectually we know that this disease exists and the doctors explain the symptoms to you. In this case, James had been emotionally attacked by his mother for decades. We have to have empathy not only for the brain that has the disease, but also for that of the caregiver, in this case James's.”
Often, caregivers refer to patients as children or babies and make allusions to that childhood universe to which they both move. Kiper understands this and defines this strategy as a “survival mechanism,” because it is easier to forgive a baby than an adult. “What I can't stand,” he adds, “is when health professionals do it, there is a certain tendency to romanticize these diseases, as if at the moment of receiving a diagnosis someone becomes a pure person who has never done anything wrong. That's not only wrong, it's downright dehumanizing. “You can have dementia and be an absolute nightmare.”
In fact, Kiper insists, “if you eliminate the medical aspect and look at it only from a human aspect, the symptoms of Alzheimer's and dementia are very abusive. Often the sick do not remember what is happening, and the caregiver feels erased and belittled. "They have problems with emotional regulation: they are more volatile, they can be more offensive and they don't always recognize that they need help, so they are always in fight mode."
Added to the difficulties of the disease itself are external conditions, such as the economic problem generated by a diagnosis of this type – a study by the Pasqual Maragall Foundation in 2019 estimated the average cost of almost 25,000 euros per patient – and the bias of gender. According to ACE, Alzheimer Center Barcelona, 67% of caregivers are women. And the numbers Kiper cites in her book, limited to the United States, are not very different. “The weight of social expectation falls on women,” the author emphasizes. “Not only are they more likely to be the caregivers, they have to deal with those expectations and feel guilty if they don't meet them. They often feel that they are failing as feminists and as daughters or wives, because they believe they are not doing enough.”
At one point, however, he had to start an all-male support group because he found that they had fewer people to talk to. “In older generations, they don't have that emotional support, and they often approach the problem as if they can solve it, and that also frustrates them, they measure value as husbands, as children based on how much and how they can solve it.”
The guilt he alluded to is the most transversal feeling, common to all caregivers of all ages, backgrounds, cultures and religions – although, practicing in a place as diverse as New York, Kiper has observed cultural particularities in his caregivers, such as the tendency of Latin women to self-denial and try to preserve a certain family honor by not talking about painful issues. “In my support groups we talk a lot about guilt. She is always there and it is like she is a toxic friend who tells you that you do everything wrong. We must learn to moderate it and ensure that it does not completely paralyze us.”
Empathy is another concept that usually comes up when talking about care, and the clinical psychologist prefers to limit it. “We always see empathy as a wonderful thing, but empathy per se does not make us behave more compassionately. When our brain empathizes with another, it is asking: what would you like. But that is problematic with dementia, because what you wanted as a human being does not correspond to the disease. I think that caring for someone with Alzheimer's requires more compassion than empathy,” observes Kiper.
A fact that may not be so surprising to those who have cared for people suffering from degenerative diseases is that, when everything ends, in addition to a huge void, caregivers are left with two feelings: they would do it again, but they would change how they did it. “At first that surprised me, I didn't know if it was self-deception, but I think it's because our brains are enormously adaptive. Part of that comes from having provided comfort to a loved one, but it also happens that the brain is good at reframing things, making sense of them. Once the experience is over we can look at it with greater tenderness and remember the wonderful moments. Caring leads to a lot of intimacy. Maybe a father was a very proud and self-sufficient person, but during that stage he allowed you to clean him up. Those moments end up full of meaning.”
What about people who exclude themselves from care? Do they always do so motivated by a selfish impulse, hoping that someone else will take charge? “Not everyone can care, and I don't think it's right that the family is always expected to do so. Just as there are people who are not made to be fathers or mothers, there are people who should not care and that does not make them worse. Being a caregiver requires many qualities and not everyone can do it, it is like devaluing this very difficult job. I have heard many women say that they were about to divorce their husbands when they fell ill and were forced to take care of them. They shouldn't be doing it, even though I know it's not realistic. I wish society would allow it.”
