Taiwan's first doctor of Eastern European literature and retired professor of the Department of Foreign Languages and Literature at National Taiwan University passed away in 2025 at the age of 84. However, Professor Ou suffered from Alzheimer's disease during his lifetime, and his daughter Wei Yilin has not completely recovered from the pain, but I still fully recall this care process, from the initial awareness, personality changes, refusal to seek medical treatment, delusions of victimization to sudden deterioration, detailing all the details on the care journey, hoping that all walks of life can empathize with the situation of dementia families and provide patients with correct care.
Wei Yilin said that the first time she noticed signs of dementia in her mother was on the day of her grandmother's funeral in 2018. Her mother, who was usually thinking clearly, suddenly turned around and asked one thing, but she could not finish the sentence. The sentence ended with "then", her expression was panicked, and she stopped there, and then she thought: "Is my mother starting to lose her mind?" After that, although her mother was healthy and walking fast, she would ask the same questions over and over again, say illogical sentences, and sometimes forget to bring her keys or forget to go home.
Wei Yilin said that her mother's more obvious "personality change" was that she used to be outspoken and even stern, but suddenly became very gentle, "she would say to me, 'she loves me very much'." She began to accept other people's opinions and did not correct them when opposed, but agreed and said thank you. This change was more shocking than the degradation of memory. "I know that my mother has always been very well-educated, but she is quite strict with her relatives. Taiwanese culture is not used to expressing "I love you" to their children. "
However, Wei Yilin said that when she took her mother to the hospital's psychiatric department for evaluation, the preliminary evaluation went well. However, on the day of transfer to the hospital for formal examination, her mother suddenly lost her temper and refused to seek medical treatment. "She actually knew that something was wrong with her, and that kind of 'knowing' might become a humiliation for her when she was in a bad mood." Therefore, the inspection could not be completed on that day.
Wei Yilin said that patients with dementia have high mood swings, sometimes furious and sometimes extremely tender. Whether they can successfully seek medical treatment depends on "the right time, the right mood, and even the right person." For many families, this means re-appointments and attempts again and again. "My mother has always been relatively receptive to my aunt's suggestions and assistance." Finally, with the help of her aunt, she completed the examination and was diagnosed with mild Alzheimer's disease, and she started taking medication regularly.
There was a slight improvement after taking the medicine at the beginning, but as the disease progressed, Wei Yilin pointed out that her mother's memory gradually declined, but the most worrying thing was the "persecution delusion". "Because I have been married for many years, my father is healthy and sober. I gradually start to have random thoughts every day when we get along, and I will suddenly suspect that my father is having an affair." The way to resolve it is to act as a mother's hallucination. At that time, the father hid in the room and informed his daughter that he would call her to distract the mother. Although it was effective, the reality may not always be resolved, especially the "twilight syndrome" in the evening (the behavior and consciousness of dementia patients are confused in the evening and night). Later, he developed a habit of calling and chatting regularly every evening to try to keep the mother in a happy mood.
On May 6 last year, "that day, my father suddenly collapsed at home and left!" Wei Yilin said sadly. Her mother watched her father lying on the ground all night, but could not understand what happened. Afterwards, forensic medicine determined that her father died suddenly of pancreatic cancer. But after that day, her mother's condition deteriorated rapidly, from mild to moderate degeneration to severe dementia in an instant.
Wei Yilin recalled that her mother was extremely anxious, unable to understand where her husband was, and was hysterical about herself. "At that moment, my mother no longer recognized who I was." After the emergency doctor's evaluation, her mother lost her basic sense of orientation and could not even say her full name. She was later arranged to be admitted to a psychiatric ward. By taking medicine and eating on time, she slowly stabilized her mood, but she also left her job to take care of her mother.
But being hospitalized also has its drawbacks. Wei Yilin said that her mother had to live in a strange environment with other patients in unstable conditions, and had to hire 24-hour care. In order to avoid falling, she needed a wheelchair, and the hospital was only open to visitors for two hours a day. She rushed to the hospital every day to stay with her at least for a while. "My mother felt like she was being imprisoned, and she often begged us to smuggle her away with tears, but there was no way. Her condition was under control, and being in a safe place was the most important thing."
After being hospitalized for one and a half months, my uncle Ou Jinde (former deputy mayor of Taipei City) helped transfer my mother to a nursing center, which made me feel relieved. In addition to drug control, the center also provided activity arrangements and emotional care, and guided her to slowly practice standing and walking to avoid functional deterioration. "Professional nursing centers can take my mother out for walks, go to the park, and eat food from restaurants at any time, which can make her smile a lot more and her condition and mood become much more stable."
Some outsiders think, why can’t people with dementia be cared for at home? But Wei Yilin believes that the real problem is "They can't fall or miss taking medicine!" And caregivers also need to sleep, work, and live. If they are neglected, the consequences may be very serious. Professional institutions are, to a certain extent, a safer choice for patients and their families. However, when her mother passed away in a nursing home, she was still very sad. "But at least she kindly took a break after breakfast and dozed off." It made her relatives feel that at least she did not experience any pain.
Wei Yilin finally mentioned that she was lucky to have many relatives to help take care of her, but not everyone has the same. Taking care of elders with dementia is a huge responsibility. Her mother was full of talents when she was alive. Whether she was hospitalized or transferred to a nursing home, many students took turns to visit her. "You don't need to come all day long, just once is enough." For a mother with dementia, visits from relatives and friends are of great help to her brain, body and mind. Taking care of elders with dementia is a problem that many people may experience in the future: "Sharing these details actually occasionally worries about the good impression of my mother during her lifetime, but I believe that my mother hopes that everyone can receive the right care."
