Being a caregiver is like being an anthropologist on Mars.” This is what a caregiver of an Alzheimer’s patient told Dasha Kiper, and the phrase seemed so accurate that she used it at the beginning of her book, Viaje a tierras inimaginables (Asteroid Books). In the book, Kiper, who is a clinical psychologist but also took care of an Alzheimer’s survivor who was a Holocaust survivor, accompanies those who accompany them to that unknown land that is the sick brain.
“It is not easy to live with a person who blatantly despises the rules of time, order and continuity. For this reason, instead of offering clichés and redemptive lessons, I intend to normalize the caregiver’s denial, anger, frustration and helplessness”, the author proposes from the beginning.
“I think the right word is victim,” explains Kiper, who advises support groups for caregivers of people with Alzheimer’s. “I’m sorry to say it, but carers are often even more affected by the disease, because people with dementia sometimes have the advantage of forgetting and thinking that everything is fine, but carers are never saved from the disease . They remember the fight yesterday and the hurtful things they said to them. One of my carers told me: ‘Everyone asks me about my husband. he is fine I’m the one who’s going crazy.”
Kiper’s book, which owes a lot to the medical literature of Oliver Sacks, raises in different ways “the caregiver’s dilemma” – if the person I love and care for is no longer her, who am I caring for? – and reassures and preemptively forgive Alzheimer’s sherpas: if what they do is so difficult for them, it is not because they lack empathy, patience or any of the hundreds of emotional resources necessary to do this task: it is because their brains are designed this way, to put order chaos
Caregivers often refer to patients as children or creatures and allude to this childlike universe into which they both move. Kiper understands this and defines this strategy as a “survival mechanism”, because it is easier to forgive a child than an adult. The expert observes that, “if you remove the medical aspect and look only from a human aspect, the symptoms of Alzheimer’s and dementia are very abusive. Patients often do not remember what is happening, and the caregiver is looked down upon. 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 a fight.”
External factors are added to the difficulties of the disease, such as the economic problem caused by a diagnosis of this kind – a study by the Pasqual Maragall Foundation estimated the average cost at almost 25,000 euros per patient in 2019 – and the gender bias According to the Alzheimer Center Barcelona (ACE), 67% of caregivers are women. “The burden of social expectation falls on women”, the author emphasizes. “Not only are they more likely to be the carers, it’s that they have to live with these expectations, and they feel guilty if they don’t meet them. They have the feeling that they fail as feminists and as daughters or women, because they think they don’t do enough.”
Beautiful Adriana
“My mother was diagnosed with senile Alzheimer’s in 2013, but she has probably had it since 2010. I have been taking care of her for 14 years. My mother is my eldest child. She doesn’t walk anymore, she doesn’t speak and she’s increasingly sleepy, more scattered, with her head somewhere else.”
”But there are moments of contact when he connects to the Earth and knows who I am. Not like his daughter, but he recognizes me as a reference of love and care. We are a lot of quarantines, although there are fewer and fewer of these moments, because the neuronal destruction follows the course”.
“I think a lot about the movie Benjamin Button. Sometimes I hold her in my arms, I hold her as if she were my child, she looks at me and smiles at me. It’s a delight.”
“I used to be an architect, but now I’m a full-time carer. I had to leave work. My mother got the dependency allowance and I receive the minimum living income. We live on this and what I have saved from all the years of work. I have always been a very spartan person.”
“The first thing you need is the support network. My friends disappeared. Which friends can stand me taking my mom everywhere? My mother is like my handbag, she comes everywhere with me. This serves to clean up the people around you. Now I’m able to appreciate brave people, but I understand… It’s ugly to see a person with Alzheimer’s. You look at your future, it’s very scary. It’s not evil, it’s just panicking. I have already faced the possibility that she will not be there, what will be the meaning of my life. It pains me to think about it, but I have a whole spiritual journey that supports me. The day my mother isn’t there, I don’t want to take care of even a goldfish.”
Núria Clos
“He had worked all his life as a salesman. I started selling books and then in real estate, but I had to give it all up to take care of her. I am not aware of when I decided that I would be my mother’s carer. My brother refused. Then I perceived it as a smoke bomb, but now I know that he knows that in the relationship I have with my mother there is no one else. When we were given the diagnosis, I was about to undergo artificial insemination treatment. I wanted to be a single mother. But I gave it up. I had the two diagnoses in hand, I had done all the tests and everything was perfect, but I had to choose and I considered that it was not consistent to take on this responsibility”.
“I experienced covid with a lot of psychosis, I was afraid that I might have it. I lost 36 kilos, suffered a lot of distress. My mother has been living in a nursing home for two years now. I had to accept my limitations. For love, you would have her at home, but for common sense you are not ready. She needs something more than goodwill.”
Juan Arlandis
“It doesn’t matter if it’s a documentary about dinosaurs or something about crimes. For my father, everything he sees on TV exists in his village. He was diagnosed with Alzheimer’s eight years ago, but because of the development we think it is more dementia. My mother was diagnosed with vascular dementia due to a micro-infarction in the brain and the deterioration has been very rapid. It’s a big mess and it’s very painful.”
“In the morning I go shopping, I clean, he prepares food and organizes the house. In the afternoon they do not move from the sofa. My father laughs every day when they watch First dates. He tells you things about his youth. He invents them. A man born in a town in 1935, and if you pay attention, it looks like it was Benidorm in the eighties. What if the girls, what if the motorbikes. He invents things constantly. It has been hard for my mother, she is a woman like the ones before. He says, ‘What is my son doing washing machines?'”
“What is logical or normal in this house does not exist. You can’t say: ‘Mom, I told you the vegetable goes here’. You find sausages in the washing machine, ham in the clothes drawers. There have been significant changes. Father has always gone to his, and mother has never been very affectionate. We had never seen any displays of affection at home. And now it’s a pass, a gift. They are like two young lovers. They constantly kiss, dance, caress each other”.
“I’m a musician, I’ve toured all over America and Europe. I lived many years at night, debauchery, not taking care of my daughters, being the most selfish person in the world. I have learned to help, to listen and to give. I don’t know the formula, and I don’t stop to think about it either, but what works is being practical and not giving importance to so many things. What matters is that today we are fine, we had lunch, my parents are happy. It reassures me that my mother thinks: ‘Whatever happens, my Juan will fix it for me'”.
Funny
“I took care of my husband for six years, until I had to admit him to a nursing home, because he was starting to have violent reactions and he was too corpulent. He could knock me down. Our marriage was not like those who have been together since their 20s. He was my mother’s neighbor. A very handsome man, very well built and educated, with a very good reputation and very discreet. We started being a couple when I was 54 and he was 55. But each had their own world, their own flat and their hobbies”.
“We had eight good years, very good. We ate together, went to the cinema, spent the weekend and holidays together. we were traveling Until I started to notice that something wasn’t right. Since I had a very serious episode of burnout syndrome at the end of my time in Brussels, I knew how to detect that something was not right. I suggested he go to the neurologist, but he didn’t want to go, he said he had always been clueless. He finally got there in 2014 and we had the diagnosis. He was 65, very young.”
“We lived three years like a vacation. What do we like, a couples massage? Couple massage every week. A spa? Well, at the spa. I have an apartment on the Costa Daurada and it was our love nest. But poor thing, when we got there he started with fears, he thought that if he didn’t sleep in his bed, someone would take his place and he would have to sleep on the street. He was going to the station alone. When it comes to the moment of deterioration, the carer arrives very tired, catatonic”.
“He became obsessed with wanting to go see his father, who had been dead for 40 years. He then attacked me, punched me once and slammed the sitter against the window. My friends and family told me I was putting my life at risk. We admitted him to a residence in Collserola. I showed up at any time at the residence. We gave him breakfast, lunch, dinner, we took him for a walk, we devoted ourselves to him as if he were a child. I couldn’t be more calm. I actually didn’t rest until she died because I was so afraid she would fall and break her femur. On March 8, 2020, I was no longer able to visit him due to the restrictions of the pandemic and he died on May 25.”
