Both Moms with Dementia

2-1 The Long Journey to Obtain Long-Te

As autumn set in, my mom's actions started to catch me off guard more frequently. I found myself struggling with an overwhelming sense of stress that was hard to describe in just one word. Whenever I had to leave her alone for any reason, I became so anxious that I couldn’t focus on my work properly. The ballet classes I used to take twice a week in the evenings as a hobby were no longer an option. On the rare evenings when I had plans to meet friends, I would attend just long enough to quickly eat and then rush back home to care for my mom.

One day, at a parent meeting I attended with a heavy heart, I came across a piece of golden information. The meeting had started back when our children were in school, but now that we were all of a similar age, conversations naturally often turned to the challenges of caring for our aging parents. One of the members worked as a social worker at a daytime care center. After hearing about the difficulties I was facing with my mom, who was becoming more and more like a different person, she advised me to apply for a long-term care grade to receive home care services. At the time, I had no idea such a system even existed. I had vaguely heard about it but assumed my mom wouldn’t qualify. I thought it was only for people who were completely immobile.

It seems there are still many people like me who are unaware of the long-term care insurance system, which can provide significant assistance in various aspects if utilized properly.

A recent news article reported the tragic story of a man in his 50s who committed suicide along with his father, whom he had been caring for over the past eight years due to dementia. The deceased father and son were not receiving elderly long-term care services provided by the local government. Their heartbreaking story highlights the gaps in caregiving policies that fail to support caregivers in maintaining their daily economic activities while providing care. The national long-term care grading system for the elderly is divided into grades from 1 to 5. For seniors who do not qualify for these grades but still need assistance, there is a system called the Cognitive Support Grade, the lowest level of eligibility, which allows them to receive benefits. If the father in this story had at least been approved for the Cognitive Support Grade, he could have received care at a day and night care center. However, there was no record of them ever applying for the long-term care grade.

Reading this article reminded me of my own ignorance during the early stages of caring for a loved one with dementia. It was my reality back in 2015, yet it’s disheartening to see that there are still people as unaware as I was. One can’t help but wonder—what is the government doing, and where are the neighbors in such situations? It’s truly a heartbreaking reality.

The day my friend suggested I apply for the long-term care grade was a Friday evening, so I had to wait for the weekend to pass. As soon as the new week began, I promptly submitted an application for the long-term care grade to the National Health Insurance Service.

Although I submitted the application, it took quite a long time for the grade to be finalized. This was because I failed the first assessment and had to reapply a second and even a third time. On the day the National Health Insurance Service staff came for the initial visit, I happened to have a particularly busy schedule due to a class I had to teach. Before leaving that morning, I reminded my mom several times to stay home because someone would come to check her health. However, as soon as my class ended, I rushed home only to find my mom arguing with the agency staff—not at home, but out in the field. My morning reminder had long since been forgotten, like water off a duck's back.

"What are these people here for? I can take care of myself just fine!"
"You seem very healthy, ma'am. You even cook all your meals on your own, I hear."
"Just go on now! I don't need anything!“

Every day, Mom would complain, "My back hurts, my legs hurt, I can barely get up," like a broken record. Yet here she was, working in the small vegetable garden next to her house, yelling angrily at the top of her lungs. I had to stay as calm as possible while explaining to the public health center staff all the difficult situations and challenges I faced because of Mom, emphasizing how hard it was to manage living alone with her. However, judging by their skeptical expressions, I could already tell this wasn’t going to work out. As expected, the result was a rejection. I’d have to wait another three months before reapplying. I let out a sigh heavy enough to sink the ground beneath me. Meanwhile, Mom, looking as energetic as ever, carried a hefty bunch of radishes she’d harvested from the garden and briskly brought them into the house, as if to underscore how healthy she appeared to everyone but me.

For the second application, I chose a day without classes to wait for the interview. From the morning, I began "training" Mom. "Mom! Think about how hard it is for me to juggle school, taking care of you, and running this household. Those people coming to the house need to understand our situation so they can help us. If someone comes to help, I can go to school with peace of mind. So please, don't even try to get up, okay?"

"Okay, I’ll do what my daughter tells me to." For some reason, she answered compliantly this morning. Could things finally go well today? As the interview time approached, my heart grew increasingly anxious.

Finally, the caseworkers arrived. After asking a series of basic questions, it was time to test her physical abilities.

"Please lift your leg.“

I nervously watched Mom. But suddenly, she sprang up as if she had some idea in mind. ‘Mom, just stay still!’ I shot her a reproachful look. But Mom, seemingly headed for the bathroom, instead opened the fridge.

"Mom, why?"
"Well, you have guests here, and you're just sitting there? You should at least offer them something to eat!“

It was driving me crazy. "There's no problem with her mobility?"
"Well, she can move, but I still have to be by her side all the time."

I held back my tears and desperately tried to appeal to them, making us appear pitiable. Dementia has its ups and downs, and while her condition fluctuates, Mom was more lucid than usual when the investigators came. No matter how much I tried to explain and show them videos, they wouldn't believe me. And to make matters worse, Mom insisted again, "I cook and take care of everything myself." "No, Mom, you don't cook by yourself. I do everything for you!" Mom, with her short-term memory loss, seemed to be referring to how she used to be, but others were inclined to believe her. I was the only one who knew the truth.

A thought crossed my mind as I noticed the exchanged glances between the two staff members—something wasn’t right. Inside, I thought to myself that if I could just get a doctor's opinion, everything would be fine. In the days leading up to the hospital visit, I kept repeating the same things to Mom. No matter what I said, the health insurance office staff didn’t believe me, so I decided that I would have to control Mom and even try to brainwash her if needed.

"Mom! When the doctor asks, say everything is difficult! Say you can’t do it! If they ask you to stand up, don’t get up at all! Got it? That’s how you get the grade!"
"I got it, I got it, stop repeating it!“

It’s an answer filled with mom's irritation. But then mom messed things up again. Before I could answer the doctor’s question, mom jumped in.

"There's no problem. At this age, I can't just say I can't live on my own!“

‘Could it be that my mom's pride came back? Who in the world understands how I feel...?’ With a frustrated heart, I turned away. As expected, that day, just like any other, there was no shortage of bickering with mom. My head throbbed. I'm sure my constant pushing made mom's frustration bubble up as well.

On the third attempt, perhaps because the weather wasn't good, my mom's cognitive state seemed as cloudy as the sky. She couldn't hold a proper conversation with the consultant and kept saying unrelated things. When I expressed my frustration about the previous two unsuccessful evaluations, they showed expressions of complete empathy. "How come it hasn't worked out with this condition?" I heard them say, and I thought to myself, ‘This time it might work.’ With the doctor's opinion in hand, it didn't take long for my mom to receive a care grade of 5. It's really difficult for dementia patients to get a care grade. Without living together, even the doctor can't fully understand the severity, so I was the only one silently suffering.

After three attempts, my mom finally received the lowest care grade, grade 5, in the elderly long-term care classification. Now it was time to use the home care system. I thought that once the grade was assigned, my worries would be halved. However, that was just my own misconception, and another challenge was waiting for me.

The home care service with a caregiver started. I was filled with anticipation, hoping that even just three hours a day away from my mom would give me some free time. However, unexpected conflicts arose between my mom and the caregiver due to my mom's changed behavior from dementia. My mom felt that the strangers coming into the house were intruding on her life.

"Where do you think you're coming?"
"Why are you here in my house?"
"Don't touch that, just sit still.“

My mom would yell and scream like someone who was fighting, her eyes changing as soon as she saw a stranger! No matter how gently and kindly the caregiver tried to approach her, it was completely useless. She would order them to leave her house and even resort to personal insults, finding any excuse to criticize.

"Why is your hair so messy?"
"You look so strange, you can't even cook properly.“

I can't even count how many times the caregiver changed. Eventually, the center that dispatched the caregivers made an effort to send the most experienced and skilled person, but even that caregiver eventually apologized, saying there was no one who could handle my mother. In the end, no one was available to come anymore, and it became embarrassing to ask for more, so I had to give up on using the home care service.

Since I couldn't use the home care service, I had to try another program. After inquiring around, I decided to try a day care center for the elderly, often referred to as "elderly kindergarten," which provides care and various activities from Monday to Friday, much like a daycare for children. Of course, my mother didn't willingly agree to go. She stubbornly insisted that she wouldn't go, but I eventually convinced her to try it. However, at the center, she sometimes fought with other elderly people and would act like a child, refusing to go, saying, "Why should I go to a place full of idiots? I'm too smart for that." Even though I carefully scheduled everything in advance to make it work, when the center's car arrived, she would throw a tantrum and refuse to go. I was at a loss about how to convince her to go properly.

We had to coax and comfort my mother, devising strategies to make it work. It probably took at least a month for her to finally go willingly. The solution turned out to be a young male caregiver. From the day he came to pick her up—tall, young, and kind—my mother stopped resisting and followed him without any complaints.

After all these twists and turns, my mother started to gradually adjust to the center, and I was able to attend my school classes during the day with more peace of mind. Of course, more challenges awaited in the future, but for now, things were a bit easier.

If someone in your family has been diagnosed with dementia, it’s important to actively learn about the Long-Term Care Insurance system for the elderly. Even for a short while, entrusting a family member to the care of a professional caregiver and having some time for yourself can provide an unexpected sense of relief and freedom for the primary caregiver. Those precious moments of respite can make a significant difference.

Tip!

The Long-Term Care Insurance system for the elderly is a social insurance program implemented by the government for people aged 65 and older. It targets individuals who find it difficult to carry out daily activities without assistance. The Health Insurance Service receives applications, conducts evaluations, and determines eligibility. Once a person receives a long-term care grade, the government covers over 85% of the costs, with the individual paying no more than 15%. This enables access to services like home care, nursing visits, bathing assistance, and day care centers at an affordable rate. After applying, staff from the Health Insurance Service visit the applicant, inspect the relevant details, and after receiving a medical opinion from a doctor, an assessment is made to confirm the care grade. Previously, there were five grades, but now, in addition to these, there is also a cognitive support grade below grade 5, expanding the support range.