How can caregivers cope when a family member is diagnosed with dementia? Brain imaging taken in the emergency room showed shrinkage in Utsudo’s father’s frontal lobe, and he was later diagnosed with mild dementia. Shouldering his care alone, she broke down for a while and sought medical help for herself too, with medication to stabilize her mood. A year later, she has gradually accepted it and started using long-term care, respite services and other resources. Taking her father out for steak on Father’s Day, she only hopes he can stay with the family a few more years.

Translated from Utsudo’s original Chinese column.

My father’s dementia diagnosis

Continuing from last time: my father was diagnosed with mild dementia.

The scans showed shrinkage in the frontal lobe of his brain. That area mainly governs emotion and language. No wonder he sometimes didn’t seem to grasp what others were saying, or gave unrelated answers. But this type of dementia is hard to detect early on. At first we thought he just wasn’t listening carefully; we never imagined it was this.

We found out because last year he went to the emergency room, and to rule out life-threatening problems, they happened to take a brain scan. The ER didn’t spot dementia, but later, when he started forgetting things, I felt something was off. On top of that, I was under so much stress that I was showing signs of depression, so my sister suggested that my dad and I both see a psychiatrist.

Actually, I already worried he might have dementia then, but I still hoped a doctor’s diagnosis would rule it out so I wouldn’t have to live on edge. I was afraid he’d have the same illness as my late grandmother. But she developed it in old age, and my dad wasn’t even 65 yet, so I thought it couldn’t be.

At the time, I didn’t even know early-onset dementia existed.

After looking at the scans, the psychiatrist said gravely that my father’s frontal lobe had shrunk beyond what’s normal for his age—in short, he had frontotemporal dementia.

When I heard this terrible news, tears immediately poured out uncontrollably.

My mind went blank. I really didn’t know how to face that future.

The pressure of carrying it alone

When my grandmother was ill, the whole family was thrown into chaos and caught off guard—but at least there were three other family members then. Now I’m the only one at home, and this illness only gets worse, with each stage bringing new changes. I was so scared and didn’t know how to handle it.

In that moment I truly felt my life was over. From that day on, I’d have to carry my father alone until I was crushed by the financial burden and pressure. And even if I gave up fiction to focus on caring for him, who would support me after he’s gone? Wouldn’t I be old, poor and without experience?

This broke me, already prone to depression.

Luckily, I’d also booked an appointment with the psychiatrist that day, so the doctor prescribed antidepressants for me right away. When my dad had been hospitalized before, I’d been running around handling things for him, caring for him at the hospital, and taking calls from many people asking about him. Everyone told me what I should do, and all that pressure fell on me. I really couldn’t take it.

Around then, I went to the post office to pay bills for my dad. A volunteer saw me—maybe I looked terrible—and sincerely said, “You’ve worked so hard.” At that moment, tears fell and I couldn’t stop for a long time.

I remember that during that time my mind was full of negative thoughts; all I could think about was how to escape it all. Fortunately, after taking the antidepressants, I could sleep better, my thoughts stopped swinging to extreme pessimism, and I gradually returned to normal. After a while, I finally stabilized.

A year later, gradually accepting it

Now a year has passed.

I’ve gradually accepted my father’s dementia and started looking for possible help, such as long-term care, respite services and disability support. Emotionally I still feel a bit down sometimes, but at least it’s no longer so heavy that I can’t move.

A Father’s Day countdown

In the blink of an eye, Father’s Day is here again.

I can’t help sighing at how fast time flies—a whole year has gone by.

This year I took my father to Tasty for steak. He said his stomach wasn’t feeling well, so he only ordered a main course and a drink. Sitting beside him, looking at his thin cheeks and white temples, I felt both tender and uneasy.

Even with medication, I don’t know how many more Father’s Days and birthdays he can spend with us while staying “normal.” I wish he could stay with us longer, so I work hard to make sure he takes his medicine every day, patiently remind him of things, and accompany him to more activities.

When I was little, you held my hand and walked me forward. Now that I’m grown, I can support you as we keep walking toward the future.

There may be many storms ahead, but I’ll work on adjusting my pace and mindset.

So please stay with us a few more years, okay?

FAQ

Further reading

• Previous: Hey! I Heard You’re a Writer on Ghost Island #203: National Health Insurance and Long-Term Care 2.0—Benevolent Policies
• Start from the beginning: Hey! I Heard You’re a Writer on Ghost Island #01: Utsudo’s Debut — A Road to the Dream Covered in Frost
• Utsudo’s books

About the author

Utsudo is a Taiwanese light novelist and novelist VTuber with more than ten years in the industry and 40 commercially published print books. Her novel 《遺失的情書》 received a 2022 Ministry of Culture youth creative award. The 《嘿！聽說妳在鬼島當作家》 series records her experiences as a novelist in Taiwan.