The Caregiver Who Changed Everything | 18 Years of Live-In Dementia Care

In the first five years after my wife's diagnosis, we went through more than 30 caregivers. Most lasted less than a year. Some lasted only weeks. Then, one person came and stayed for five years. And another came and has stayed for ten. This is a story about what makes a caregiver truly exceptional - and what I have learned about my role in making that possible.

Why We Went Through 30 Caregivers in Five Years

From 2006, when my wife first showed symptoms of Parkinson's disease dementia, to 2011, we went through more than 30 caregivers. Most could not last a year. Many left after just two or three months. Starting in 2007, we also needed a separate housekeeper, which added another layer of complexity to the household.

This is not unusual. According to the Home Care Association of America, the turnover rate for home care aides in the US reached nearly 80% in 2023. In our case, the reasons were varied, but a clear pattern emerged.

Some left because the work was simply too hard. Caring for a bedridden patient is physically and emotionally exhausting, and burnout is real. An AARP study found that 64% of family caregivers report high emotional stress and 45% report high physical strain, and the numbers are even higher for those caring for someone with dementia.

Some left because of conflicts with the housekeeper. Two people sharing a home with a patient and a family creates friction that is difficult to manage.

Some had to be let go. There were signs of mistreatment: unexplained bruises and scratches on my wife, signs of emotional distress. There were signs of theft: expensive items and clothing that gradually disappeared. There was neglect: my wife's clothing and hygiene falling below acceptable standards. One mistreated our dog.

And there were those whose intentions were not what they seemed. Some showed excessive personal interest in me, making advances that had nothing to do with caregiving.

As a professor, I was accustomed to dealing with many different people. But managing caregivers was harder than anything I had faced in academia. I was younger then, in my fifties, and I endured it. If I were placed in that same situation today, I honestly do not think I could handle it.

The First Live-In Caregiver Who Stayed: Five Years of Trust

In 2011, Ms. Seoyeon Lee (pseudonym) joined us. She would stay for five years.

Ms. Lee was born the same year as me, 1956. She was unmarried and had devoted her life to caring for her elderly mother. She was a devoted daughter in the truest sense. She had never had the opportunity to marry because she was always working, always caring for someone.

She was careful, wise, and knew how to maintain a good relationship with the housekeeper — something that had been a constant source of problems before her arrival.

Every day, she would put my wife in a wheelchair, take our dog on a leash, and walk along Yangjae Stream for about an hour. Pushing a wheelchair while managing a dog on a walk is not easy. But she did it almost daily, and it became one of the most precious parts of my wife's routine.

Her level of care was so high that I had almost no complaints during the entire five years. She was exactly what we needed.

In early 2016, she told me she was getting married. But the truth was that a suitor had been asking for a year already, since 2015. She had delayed for an entire year because she could not bring herself to leave my wife. It was only when the suitor pressed her urgently that she finally came to me with the news.

When she left, she worried deeply about my wife. So did I.

Two Months of Crisis Between Caregivers

After Ms. Lee left, another caregiver came for about two months. She was a kind person, but she reached her physical limit quickly. She pleaded with me to find a replacement as soon as possible.

It was in this desperate moment, in February 2016, that I met Ms. Kim.

How One Dedicated Caregiver Transformed Our Home Care

I have written about Ms. Kim before. In my post about the airflow mattress topper I built for my wife, I described how she declared on her very first day that my wife should be using cloth diapers — a decision that revealed her extraordinary level of commitment before she had even unpacked. In Part 3 of my story, I shared her words: "I will take responsibility for your wife until the end."

But there is much more to say about what changed when she arrived.

Ms. Kim began keeping meticulous daily care records. This was something none of the previous caregivers had done. Every day, she documented meals, oral hygiene, medications, temperature, blood pressure, pulse, bowel and bladder management, bathing, skin condition, and nutritional status. These records transformed how we managed my wife's care. Problems that might have gone unnoticed were caught early. Patterns became visible. Communication with visiting nurses and doctors improved dramatically.

Ms. Kim's background explains her extraordinary dedication. She is the eldest of four siblings, two sons and two daughters. The responsibility of caring for her family was ingrained in her from a young age, and it carries over to how she cares for my wife.

She completed graduate coursework at the master's level and worked at a major corporation before starting her own business at a young age. The business was successful. But the relentless demands of running a company, raising children, and managing a household eventually exceeded her physical limits. Her health deteriorated, and she was forced to close the business and take time to recover.

Her own experience as a patient became a turning point. She wanted the skills and qualifications to care for her ailing mother, her husband, and her family. She earned her certification as a care worker and began caregiving professionally. That path led her to us in 2016.

What I Have Learned About Keeping a Long-Term Live-In Caregiver

My wife requires a live-in caregiver. A person who lives in our home is, for all practical purposes, family. In Korea, live-in caregivers are more common than in the US, but the principles of building a sustainable caregiving relationship apply universally.

A caregiver is also someone's wife, someone's mother, someone's daughter. I feel both gratitude and guilt toward the caregiver's own family for allowing their loved one to live in our home and care for mine.

After twenty years of managing caregivers — from the revolving door of the early years to the stability we have now — here is what I have learned about making live-in caregiving sustainable.

1. Share the Physical Burden

Live-in caregiving is hard work. For it to be sustainable over the long term, I must actively work to reduce the caregiver's burden. I help with diaper changes, position adjustments, patient transfers, and condition monitoring as much as I can. When the caregiver is busy or tired, I handle disinfection and laundry of patient supplies. I take care of general housework — cleaning, laundry, and cooking — so that none of it falls on the caregiver. When needed, I hire a part-time housekeeper.

2. Invest in Rest Time, Not Just Salary

There is a practical limit to how much I can increase the salary. So instead, I have gradually increased rest time based on years of service. The standard in Korea is 24 hours of rest per week. Over the years, I extended this to 48 hours, and then to 72 hours. Finding a reliable weekend caregiver to cover those days was extremely difficult for a long time. Fortunately, my brother lives in the same apartment complex, and his wife, who has years of hospital experience, now helps care for my wife on weekends. I am grateful to my brother's family and feel I owe them a debt I hope to repay.

3. Care About the Caregiver's Family

I want to do everything I can for the person who devotedly cares for my wife and grows older alongside us. Treating a caregiver with dignity and respect should go without saying. But I also try to take a genuine, ongoing interest in the well-being of her family, and to help whenever the opportunity arises.

4. Build Your Life Around What Works

Ms. Kim's husband, too, has been developing health issues as the years pass. I had long wished that our caregiver could live closer to us. When my wife could no longer travel for outpatient treatment in 2022, we needed to move to an area with home-visit nursing and doctor house-call services. When I researched the options, I discovered that the area where Ms. Kim lives has one of the best medical infrastructures in the country. We moved from Dogok-dong in Seoul to an apartment in the same neighborhood as Ms. Kim. Our homes are now a 15-minute walk apart, or 2 to 3 minutes by car.

That was not a coincidence. It was a deliberate choice. When you find someone who cares for your loved one as if she were family, you build your life around making that relationship last.

Frequently Asked Questions About Long-Term Caregiving

How do you find a good live-in caregiver for a dementia patient?

In our experience, the best caregivers are those who came to caregiving through personal experience — caring for their own parents or family members. Certification and training matter, but intrinsic motivation and empathy cannot be taught. Look for someone who asks questions about the patient on their first day, not about their own schedule.

What are warning signs of caregiver mistreatment?

Watch for unexplained bruises or scratches, sudden emotional distress in the patient, declining hygiene or clothing condition, and items that gradually disappear from the home. Trust your instincts, and set up systems for monitoring when you cannot be present.

How do you prevent caregiver burnout in long-term home care?

Burnout is the number one reason caregivers leave. The most effective prevention is not just higher pay, but reducing the daily burden: share physical tasks, provide adequate rest days, build a support network of family and backup caregivers, and treat the caregiver as a partner in care, not an employee.

Written by: Kwonhee Kim, engineer, professor, and full-time caregiver to his wife living with Parkinson's disease dementia since 2006. He writes about the intersection of engineering and caregiving at The Engineer Caregiver.

This post reflects personal experience only and is not medical advice. See our Disclaimer.