Epress.am News from Armenia
Part 1 Don’t Forget to Remember: Dementia Is No Priority for Armenian Health Care
Part 2
Caring for elderly people with dementia usually falls on the shoulders of a single relative—typically a wife or husband, daughter, son, or sister. Epress.am reached out to various solitary caregivers; most refused to give interviews. Their children do not want to tell strangers that they often get angry with their mother or father when they can’t handle their irrational behavior. They also don’t want to complain about sisters or brothers who have left the around-the-clock caregiving entirely to them. Three women agreed to speak about their experience living with dementia on the condition of anonymity. They speak about the three stages of this long illness: diagnosis, progression, and death.
Anita, 35
“My brain is ruined, I should die,” my dad said one evening last winter and started crying. Later I found out that the first person whose case defined Alzheimer’s disease in 1901 said something similar: “I am losing myself.” But he didn’t say “I must die.” Why did my dad think he didn’t deserve to live? This is also what is implied by commonly repeated phrases such as “a person with dementia becomes a vegetable.” I didn’t want to be like them.
I started going to the doctors. Since dementia is a mental illness that arises from physical damage to the brain, you need both a neurologist and a psychiatrist. Usually they dislike each other, and it is difficult to “find a pair”: neurologists evaluate the person by MRI scans, psychiatrists—by brain chemistry.
One psychiatrist helped me. I was upset and said this is the worst illness because you lose the person you knew and loved. She said: “But perhaps dementia is the best kind of death: a person slowly forgets the bad things and remembers only the good, returning to childhood. Your father is in a good place, don’t worry.” That consultation comforted me, somewhat.
And indeed, my dad’s personal tragedy passed quickly. He started playing games and was happy if he had someone to play with and tasty food. But society’s attitude toward him kept worsening. People treated him as if he no longer existed. Fewer guests came to our home. A relative justified himself: “It’s hard for us to see your dad in this condition.” Some people did come, but they didn’t greet or say goodbye to him. The neighborhood kids were openly mocking him because they didn’t have adults’ skills of pretending. I still resisted accepting that I was losing my father. Later I realized that I wasn’t losing him and wouldn’t lose him completely. What was disappearing were the forms of his social representation. For example, he started sitting hunched rather than with legs spread; he lost his macho posture. He allowed himself to hug and kiss my mom in our presence, which he never did before. The culture was disappearing—and losing that is not tragic at all. But his personality did not disappear. His character and situational reactions—like his humor—remained.
Why is dementia frightening anyways? The loss of rationality and memory is widely considered the loss of personhood. Everything goes back to René Descartes and John Locke: “I think, therefore I am,” “I remember what has happened to me, therefore I am.” Since the 16th century, this idealism has been questioned many times, but the view still persists that the mind is superior to other human capacities—like embodied cognition,intersubjectivity, connection to place. These other capacities become clearly visible in dementia: rationality fades, but other forms of being sharpen. The patient feels safe at home, with familiar people, doing favorite activities. They communicate, just differently.
If we define personhood only by rational capacities and memory, we exclude not only people with dementia but also newborns, people with schizophrenia or amnesia, and many others. A culture built like this cannot provide dignified care to those it doesn’t even consider human.
Emma, 52
Recently I went to the doctor to strengthen my nerves so I could continue caring for my mother. I said, “My mother has dementia.” The doctor said, “My condolences—you’re on the same path.”
My mother always said: “If something happens to me and I don’t understand what’s going on, take me to a care center without guilt.” I’ve looked through many options, but the ones with at least minimally good conditions—like having a TV in the room—are at least 23,000 drams per day. Who can afford that?
The most horrifying part of this illness is seeing who your loved one used to be and what they have become. That contrast is the hardest thing. It’s easier to care for a stranger.
It helped that I began watching videos in the Russian segment. They are so open, unlike Armenians. One person says: “I lie down and dream that my mom will die.” There truly are moments of anger. From those videos I understood that people everywhere have the exact same experience—whether in Russia or Europe.
For me it is unacceptable that I yell at my mother, complain. It feels like weakness. There were times I felt so horrible that I wanted to throw myself under a car, not come home. Sometimes my mother would have a moment of lucidity and remember what she had done. She’d say: “Forgive me, my child.”
At first I rebelled against my relatives—my brother, who does not help me. I told him: read, learn about this illness. I didn’t even write it in a chat—I wrote a real letter and sent it. Once he said, “I have a lot of work.” But isn’t it because I am not working—so that you can work? I cried, saying: I am human too, I also want to live. In the beginning I was very hurt; now, no. Everyone makes their choice. He has a different personality; he automatically protects himself.
My relationships have shrunk. I barely communicate with anyone. The other day my friend noticed it’s been two years since we met.
Neighbors try to comfort me: “At least your mom is on her feet.” But mental illness is more dangerous than mobility issues. I know an elderly man with dementia who suspects his grandchildren of stealing things from his house. The kids had to move out. Maybe it would have been easier if he were simply bedridden. How many cases have there been of gas explosions in apartments? People who have mental issues can hurt themselves.
Stella, 60
I cared for my father, who had dementia, for 10 years. At first he began remembering the past more, but didn’t remember the present. I brought him to live with us. We would go to doctors; they said there’s nothing wrong, it’s age-related, probably sclerosis. They wouldn’t say anything specific, wouldn’t give a diagnosis so he could qualify for any social program. I knocked on the doors of healthcare and social services for years. Only this last year he was given a third-degree disability. But that gives nothing—the pension is the same, and even transport discounts don’t apply to this third-degree.
I applied to be registered as my father’s guardian. They said a daughter cannot be a parent’s guardian: “You are the child, you are obligated to care for your dad.” By law, only a non-relative can be appointed guardian. But he would never accept a stranger. I am the actual guardian—a young person busy providing 24/7 care and unable to take a job. When a grandmother babysits a grandchild, she receives the status of care-giver.. Why is the reverse impossible? I also applied for my caregiving to count when they calculate my pension later. But no, that won’t happen, either.
My father died a month ago. His third-degree status only “helped” during the autopsy—they gave a discount.
In the end it was much worse. I had to be by his side constantly. I would move the chair and he wouldn’t remember me. He’d say: “Where is that girl—Stella?” Sometimes he confused me with my mother. He kept waiting for my sister, who never came.
The parent-child roles reversed. He became my child. Whatever you do, you can’t prevent that. People around me praised me, said: well done, you’re a good daughter, you’ve cared for your father like one would for a baby all these years.
I took my father to the “Mission Armenia” center; he played checkers or chess there. That’s where I met the NGO “Alzheimer’s Care,” which later helped us. They provided a psychologist who came to our home and did memory exercises with my father. He wouldn’t listen to me— but when Lilit came, he would obediently do all the exercises.
Abroad there are nursing homes where the elderly live, and their children visit whenever they want. The children can live freely, and the parents don’t lose connection with them. I don’t know what our money is spent on, but it would be worth spending it on things like this. Then working-age people could work, and the elderly could live a dignified and interesting life.