{"id":342092,"date":"2025-11-27T03:58:01","date_gmt":"2025-11-26T23:58:01","guid":{"rendered":"https:\/\/epress.am\/?p=342092"},"modified":"2025-11-29T02:42:31","modified_gmt":"2025-11-28T22:42:31","slug":"dementia_2","status":"publish","type":"post","link":"https:\/\/epress.am\/en\/2025\/11\/27\/dementia_2.html","title":{"rendered":"My Mom Has Dementia \u2014 and Soon I Might Too"},"content":{"rendered":"

Part 1\u00a0<\/span>Don\u2019t Forget to Remember: Dementia Is No Priority for Armenian Health Care<\/a><\/span><\/span><\/p>\n

Part 2<\/strong><\/p>\n

Caring for elderly people with dementia usually falls on the shoulders of a single relative\u2014typically a wife or husband, daughter, son, or sister. Epress.am reached out to various solitary caregivers; most refused to give interviews. The children do not want to tell strangers that they often get angry with their mother or father when they can\u2019t handle their irrational behavior. They also don\u2019t want to complain about siblings 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.<\/p>\n

Anita, 35<\/strong><\/p>\n

\u201cMy brain is ruined, I should die,\u201d my dad said one evening last winter and started crying. Later I found out that the first person whose case defined Alzheimer\u2019s disease in 1901 said something similar: \u201cI am losing myself.\u201d But he didn\u2019t say \u201cI must die.\u201d Why did my dad think he didn\u2019t deserve to live? This is also what is implied by commonly repeated phrases such as \u201ca person with dementia becomes a vegetable.\u201d I didn\u2019t want to be like them.<\/p>\n

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 \u201cfind a pair\u201d: neurologists evaluate the person by MRI scans, psychiatrists\u2014by brain chemistry.<\/p>\n

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: \u201cBut 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\u2019t worry.\u201d That consultation comforted me, somewhat.<\/p>\n

And indeed, my dad\u2019s personal tragedy passed quickly. He started playing games and was happy if he had someone to play with and tasty food. But society\u2019s attitude toward him kept worsening. People treated him as if he no longer existed. Fewer guests came to our home. A relative justified himself: \u201cIt\u2019s hard for us to see your dad in this condition.\u201d Some people did come, but they didn\u2019t greet or say goodbye to him. The neighborhood kids were openly mocking him because they didn\u2019t have adults\u2019 skills of pretending. I still resisted accepting that I was losing my father. Later I realized that I wasn\u2019t losing him and wouldn\u2019t 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 let himself to hug and kiss my mom in our presence, which he never did before. The culture was disappearing\u2014and losing that is not tragic at all. But his personality did not disappear. His character and situational reactions\u2014like his humor\u2014remained.<\/p>\n

Why is dementia frightening anyway? The loss of rationality and memory is widely considered the loss of personhood. Everything goes back to Ren\u00e9 Descartes and John Locke: \u201cI think, therefore I am,\u201d \u201cI remember what has happened to me, therefore I am.\u201d 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\u2014like 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.<\/p>\n

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\u2019t even consider human.<\/p>\n

Emma<\/strong>, 52<\/p>\n

Recently I went to the doctor to strengthen my nerves so I could continue caring for my mother. I said, \u201cMy mother has dementia.\u201d The doctor said, \u201cMy condolences\u2014you\u2019re on the same path.\u201d<\/p>\n

My mother always said: \u201cIf something happens to me and I don\u2019t understand what\u2019s going on, take me to a care center without guilt.\u201d I\u2019ve looked through many options, but the ones with at least minimally good conditions\u2014like having a TV in the room\u2014are at least 23,000 drams per day. Who can afford that?<\/p>\n

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\u2019s easier to care for a stranger.<\/p>\n

It helped that I began watching videos in the Russian youtube. They are so open, unlike Armenians. One person says: \u201cI lie down and dream that my mom dies.\u201d There truly are moments of anger. From those videos I understood that people everywhere have the exact same experience\u2014whether in Russia or Europe.<\/p>\n

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 to come back home. Sometimes my mother would have a moment of lucidity and remember what she had done. She\u2019d say: \u201cForgive me, my child.\u201d<\/p>\n

At first I rebelled against my relatives\u2014my brother, who does not help me. I told him: read, learn about this illness. I didn\u2019t even write it in a chat\u2014I wrote a real letter and sent it. Once he said, \u201cI have a lot of work.\u201d But isn\u2019t it because I am not working\u2014so 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.<\/p>\n

My relationships have shrunk. I barely communicate with anyone. The other day my friend noticed it\u2019s been two years since we last met.<\/p>\n

Neighbors try to comfort me: \u201cAt least your mom is on her feet.\u201d 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.<\/p>\n

Stella<\/strong>, 60<\/p>\n

I cared for my father, who had dementia, for 10 years. At first he began remembering the past more, but didn\u2019t remember the present. I brought him to live with us. We would go to doctors; they said there\u2019s nothing wrong, it\u2019s age-related, probably sclerosis. They wouldn\u2019t say anything specific, wouldn\u2019t 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\u2014the pension is the same, and even transport discounts don\u2019t apply to this third-degree.<\/p>\n

I applied to be registered as my father\u2019s guardian. They said a daughter cannot be a parent\u2019s guardian: \u201cYou are the child, you are obligated to care for your dad.\u201d By law, only a non-relative can be appointed guardian. But he would never accept a stranger. I am the actual guardian\u2014a 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\u2019t happen, either.<\/p>\n

My father died a month ago. His third-degree status only \u201chelped\u201d during the autopsy\u2014they gave a discount.<\/p>\n

In the end it was much worse. I had to be by his side constantly. I would move the chair and he wouldn\u2019t remember me. He\u2019d say: \u201cWhere is that girl\u2014Stella?\u201d Sometimes he confused me with my mother. He kept waiting for my sister, who never came.<\/p>\n

The parent-child roles reversed. He became my child. Whatever you do, you can\u2019t prevent that. People around me praised me, said: well done, you\u2019re a good daughter, you\u2019ve cared for your father like one would for a baby all these years.<\/p>\n

I took my father to the \u201cMission Armenia\u201d center; he played checkers or chess there. That\u2019s where I met the NGO \u201cAlzheimer\u2019s Care,\u201d which later helped us. They provided a psychologist who came to our home and did memory exercises with my father. He wouldn\u2019t listen to me\u2014 but when Lilit came, he would obediently do all the exercises.<\/p>\n

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\u2019t lose connection with them. I don\u2019t 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.<\/p>\n","protected":false},"excerpt":{"rendered":"

My mother always said: \u201cIf something happens to me, take me to a care center without guilt…\u201d<\/p>\n","protected":false},"author":2,"featured_media":342080,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"tstyn_error":""},"categories":[65981,10,66037,66056,65974],"tags":[79424,92854,92824,36577,92825,92855],"_links":{"self":[{"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/posts\/342092"}],"collection":[{"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/comments?post=342092"}],"version-history":[{"count":0,"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/posts\/342092\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/media\/342080"}],"wp:attachment":[{"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/media?parent=342092"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/categories?post=342092"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/epress.am\/en\/wp-json\/wp\/v2\/tags?post=342092"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}