[INTERVIEW] Dementia caregiver's new book becomes 'bible' for patients, families

The Korea Times

The Korea Times

Lifestyle

Thu, December 7, 2023 | 22:34

Books

INTERVIEWDementia caregiver's new book becomes 'bible' for patients, families

Posted : 2023-07-10 08:28

Updated : 2023-07-10 16:34

Cho Ki-hyeon, center top, poses with members of Forget-Me-Not during a book publication event at Milim Theater in Incheon, May 31. Courtesy of Incheon Dementia Center

Caregivers should feel content, have dependable knowledge

By Ko Dong-hwan

When nonfiction writer Cho Ki-hyeon decided to work on the book titled "Because of Dementia, Thanks to Dementia" published last April, he hoped it would serve as something like a guide, or a "map," for those interested in the mental inability that develops most frequently from Alzheimer's disease.

For the 31-year-old to create that map, there were no better people to talk to than those whose closest ones were suffering from that incurable disease.

So there ensued meetings between Cho and nine members of Forget-Me-Not, an Incheon-based self-inspiring club, who have been caring for parents or spouses suffering dementia. Since 2014, the monthly-meeting club eponymous of a small blue flower has been the members' haven where they can share stories, laugh, cry and encourage one another.

Cho met them and led the meetings nine times from April to December 2022 both online and offline. They talked about what they have learned from dementia, how to take care of themselves to stay mentally strong, how to make society dementia-friendly and what they would do if they were diagnosed with dementia. Cho, who at the age of 20 started caring for his father due to the disease, recorded the conversations and turned them into a book with six chapters under different themes.

"I recall a person saying to me that the book will help her not to get lost and wander around helplessly when she later encounters someone to look after because of dementia," Cho told The Korea Times.

"And she wasn't even looking after any dementia patient at the moment when she read my book. Fans of the book like her often make me thankful because that was what I had exactly hoped for: to make a book that is like a map for anyone interested in the disease, caregiver or not."

With an instructor's coaching, dementia patients exercise at Incheon Dementia Center. Courtesy of Incheon Dementia Center

Cho hopes that his latest book will be read by people across borders ― once it is translated to other languages ― because he wants to raise awareness that there are not just downsides but also positive and encouraging moments in caring for dementia patients.

It is in the book's preface where he stated who had especially inspired him while working on the book: those whose worlds were torn apart upon finding out their loved ones have just been diagnosed with dementia, those who have endured years since that moment, and those wishing to be closer to that circle of dementia patients and caregivers.

His source of inspiration was the belief that the book will shed a light on those who might still be lost in darkness not knowing what to do with their loved ones suddenly acting like a 5-year-old, forgetting to use the toilet or treating their family members like strangers.

"I sincerely hope the book will be read by as many people as possible, with its future translated versions hopefully reaching a diverse group of people all over the world," Cho said. "With the language barriers demolished, I want people to know that they can still live with dementia."

Caregivers from Forget-Me-Not share various opinions and questions in the book, from why people need to get a professional caregiver's license whether you are a caregiver or not ― because you never know when your loved ones will need your knowledgeable care ― to why people in the country welcome day care centers in their residential buildings but hardly embrace senior centers nearby.

They also share how taking care of themselves apart from their patients by going to a theater or strolling through a windy scenic park alone helps them stay mentally healthy. They also agree that to say goodbye to their patients forever without regret or remorse, they should be able to admit they got along with their patients well.

During the COVID-19 pandemic when all hospitals and medical centers banned visitors for years, local clinics specializing in dementia patients downsized their personnel, which in turn worsened the quality of medical care, according to Cho.

More than 40 percent of dementia patients in Incheon, for example, saw their health regress, and almost 57 percent of the city's dementia caregivers saw their burdens increase.

The writer said it was the result of how the patients' families have been relying on waning governmental supports. To turn the tide, the families must start building a self-reliant power from within, he said, so that dementia patients can receive support from both the government and their families.

"One-sided help is vulnerable," Cho said. "We shouldn't restrict ourselves as beneficiaries of governmental supports. We should help ourselves as well."

aoshima11@koreatimes.co.kr