Kyong-Mi:My name is Kyong-Mi Dillard. I was born in 1977 in Southern California and raised here as well. I’ve been a massage therapist since 1998. I’m married to my husband, Trevor. We don’t have children from this marriage, but between us we have eight children — three for me and five for him from previous relationships — and a grandson. We are also proud godparents to a little boy.

I come from a diverse, multiethnic background. My mom is Korean, and my father was French-Canadian and Filipino from Detroit, Michigan. Family has always been an important part of my life.

My interests include reading, hiking, scrapbooking, baking, genealogy, and exploring new dining experiences. Outside of spending time with family, I’m happiest when people show genuine kindness, when I can enjoy a quiet day, when the holidays arrive, and when I’m researching and curating my family tree. There’s something special about preserving family history and discovering the stories of the people who came before us.

The first signs

Kyong-Mi:My mom was always known for being eccentric, but she was also very particular about her appearance and was usually well put-together. Around 2012, I began noticing changes. She seemed to be making decisions that were unusual for her and frequently asked me to help her find her keys or cell phone. At first, I attributed it to disorganization. Then her makeup began looking noticeably different from how she had always worn it. It was thick, messy, and almost cartoonish.

That same year, she married a man she had known for only a short time. The marriage was unexpected from my perspective, and I began to worry about the changes I was seeing in her judgment. In 2015, she experienced a stroke. Afterward, I noticed increasing difficulties with her memory, finances, behavior, and daily functioning. She became forgetful about bills, frequently suspected people of stealing from her, and sometimes had intense emotional outbursts. These changes put considerable strain on several of her relationships.

Over time, she increasingly relied on her husband for everyday matters. When I moved to Hawaii, she sometimes asked other people to call me on her behalf, even though she had my phone number. I didn’t realize she was having difficulty figuring out how to use her cell phone. Our conversations also became repetitive. I would find myself saying, “You already told me that two days ago,” or, “I already told you that. Did you forget?”

“I promise she’s never been like this”

A couple of years later, I moved to Oregon. I promised my mom I would visit, and my husband and I came to California in the summer of 2021. During that visit, I noticed that her clothing was mismatched, she sometimes wore her shoes on the wrong feet, and her eyeliner was painted all over her eyelids rather than applied along her lash line. She also appeared to have worn the same clothes for several days and seemed to be struggling with her personal hygiene.

I was deeply upset because this was so different from the mother I had always known. I remember telling my husband, “I promise she’s never been like this. I don’t know what’s going on.”

When it was time to return to Oregon, I cried because I didn’t want to leave my mom in that condition. My husband promised we would move back to California. After I returned to Oregon, I called to let her know I had arrived safely and talked with her about moving back once my lease ended. She was happy about the idea of us living with her and helping her.

Coming home

When we returned to California in 2022, her behavior had become increasingly erratic. She experienced frequent episodes of what I later learned was called sundowning, and she began accusing my husband and me of stealing. We didn’t yet understand dementia or how to respond to its symptoms.

Her home also had serious sanitation and maintenance problems. I observed cockroaches, rodents, deteriorating areas of the house, and conditions that concerned me from a health and safety perspective. We began repairing the home one project at a time, including renovating the kitchen and bathroom. My mom seemed happy to see the improvements, although the changes also created tension within the household.

I was particularly concerned about some of the daily routines I observed. My mom sometimes stored food under her pillow, struggled with bathing and personal hygiene, and experienced what appeared to be frequent bowel or bladder accidents, although she could still use the toilet. I also saw her washing clothes in buckets in the backyard, even though the home had a washer and dryer. When I looked inside some of the buckets, I saw mosquito larvae. I also observed her washing dishes in buckets that had been used to soak clothes. These conditions worried me because of the potential hygiene and safety risks.

My mom was also falling frequently, and I was struggling to get her evaluated by a doctor. She was not receiving regular medical care at that time, and her behavior and the conflict within the household became increasingly difficult for me to manage. I eventually reached a point where my husband and I moved out. I felt defeated because I wanted to help my mom, but I didn’t know how to make the situation better.

The day at the bank

In 2023, my mom’s house was sold while she was in full-blown dementia, still undiagnosed and unmedicated, which I later learned was considered unethical. I was concerned about her ability to manage the money and protect her financial well-being, particularly given the memory and judgment problems I had observed. After the sale, she began making substantial withdrawals and other financial transactions that raised concerns.

One day, a neighbor contacted me through Facebook and urged me to visit my mom. He told me she had been wandering around the previous night and had said she was hungry when he checked on her.

I visited her the following morning. She was excited to see me and asked me to take her to the bank so she could withdraw several thousand dollars. While we were there, a bank employee asked her whether she remembered coming in the previous week and wiring $50,000. My mom did not remember the transaction.

The bank employee froze her account out of concern for her safety and explained that she would need a medical evaluation. The employee also expressed concern about the pattern of transactions and suggested that I explore the appropriate legal arrangements to help protect my mom if she was unable to manage her finances independently.

I cried because it was the first time someone outside our family had directly acknowledged the possibility that my mom was experiencing a significant cognitive problem. I was grateful that someone had recognized what I had noticed, that nobody else seemed to.

Diagnosis — and a legal maze

My mom agreed to a doctor’s appointment. I also contacted the county clerk’s office for guidance and was advised to explore conservatorship rather than power of attorney.

At the appointment, my mom’s husband was listed as her emergency contact. After the clinic contacted him about why she had been seen, I learned that he had initiated divorce proceedings. The timing was overwhelming because we were only beginning to understand the extent of my mom’s cognitive impairment.

The divorce paperwork was served before her diagnosis had been formally established. I contacted several attorneys, but some were reluctant to take the case because of questions about my mom’s capacity. One attorney advised me to consult a probate attorney, and I eventually found one who agreed to help. During that process, my probate attorney contacted the family law court about seeking a stay of the divorce proceedings while my mom’s medical condition and capacity were being evaluated.

Her primary care physician believed her history of stroke was consistent with vascular dementia but wanted a specialist’s evaluation. I took her to a neurologist, who diagnosed Alzheimer’s disease. Her overall diagnosis was mixed dementia, meaning that more than one type of dementia was involved. At that point, her condition was already significantly advanced.

Looking back, I wish I had understood the early signs sooner. What I initially interpreted as eccentricity, forgetfulness, or poor judgment turned out to be part of a much larger change in my mom’s cognitive functioning. I now understand how important it is to take persistent changes in memory, behavior, personal care, and financial judgment seriously.

Kyong-Mi:I can’t separate the effects of Alzheimer’s disease from those of vascular dementia in my mom. I can only describe the changes I’ve witnessed in her overall functioning.

She has become less engaged in conversation and often shows little interest in extended discussions or television. She was bilingual, but she increasingly reverts to Korean, her primary language. I may speak to her in English and receive a response in Korean. Sometimes her communication consists of grunts or brief sounds, and I have to ask her to indicate yes or no so I can understand what she means.

She also struggles to follow multistep directions. Something as ordinary as getting ready to shower can require me to guide her through every individual step. I can’t simply tell her to undress, put on her shower shoes, get into the shower, and sit down. I have to break the process into manageable instructions and stay with her as she completes them.

She can no longer manage her medications independently because she has difficulty remembering when to take them and handling the packaging. She needs assistance with many activities that she once managed on her own.

Two of our biggest challenges are sundowning and her lack of motivation. Changes in her behavior can sometimes be a sign that something else is wrong, such as a urinary tract infection, so we have learned to pay attention to changes from her usual baseline. She spends much of her time resting or sleeping, which makes it difficult to maintain adequate fluid intake. Even with reminders throughout the day, she may take only a few sips of water. A single bottle can last her a day and a half if we don’t continually encourage and assist her.

Personal hygiene is another challenge. She often says she will bathe tomorrow, so we have had to learn ways to make the experience more comfortable and less overwhelming for her. Her attachment to familiar belongings also seems to provide comfort, so we try to respect those preferences when it is safe to do so.

Since her ischemic stroke on September 29, 2026, her functioning has declined further. We have been told she is now in the final stage of Alzheimer’s disease. As we plan for her eventual return home from rehabilitation, we are having to reconsider how to arrange her belongings and living space so we can safely help with repositioning, transfers, and personal care. We want her to remain comfortable while also protecting her dignity and safety.

Kyong-Mi:My relationship with my mom has evolved from one that was often strained and distant to one shaped by greater understanding. Learning about dementia helped me recognize that some of the behaviors I once found hurtful or confusing were occurring alongside changes in her cognitive abilities.

Caregiving has also changed how I approach everyday life. When I grocery shop, I look for foods my mom might enjoy or be willing to eat. When I shop for clothes, I think about keeping her comfortable and warm. I look for soft pajamas, warm socks, and things that might make her feel cozy, because she seems to have more difficulty regulating her body temperature.

Some of the most special moments happen when she sees babies and small children. She waves at them and sometimes wants to hug or hold them. I see how much she still responds to the idea of caring for someone younger and smaller. At times, she also experiences hallucinations involving babies or children. Although these experiences can be unsettling for our family, they bring her visible happiness. She may smile, speak to them, and briefly use more English than she has during the rest of the day.

Those moments remind me that even though dementia has changed so much about my mom, she is still a person who can experience affection, comfort, curiosity, and joy.

Kyong-Mi:One of the hardest parts has been receiving unsolicited advice from people who don’t see the full picture. I know that advice often comes from a place of concern, but it can still feel like criticism when you are already doing everything you can to care for someone. My family and I have spent years learning my mom’s routines, preferences, triggers, communication patterns, and changing needs. We have tried many approaches, and what works for one person with dementia may not work for another.

Unless someone is involved in the day-to-day care, it can be difficult to understand how much planning, patience, and constant adjustment are required. I have learned that sometimes what a caregiver needs most is not another suggestion, but someone who will listen without judgment or offer practical help when asked.

We are also experiencing anticipatory grief. We are grieving the changes and losses that come with dementia while my mom is still here with us. There is a particular sadness in missing parts of the person she used to be while still loving and caring for the person she is today. I know that grief will continue in a different form when she eventually passes away.

Kyong-Mi:We have created a system among family members to help share the caregiving responsibilities. Everyone has had to adjust work schedules and personal plans to accommodate my mom’s needs.

I work Fridays, Saturdays, and Mondays. My sister can work remotely on Fridays while helping with caregiving, and my oldest son helps care for my mom on Saturdays. My youngest son caregives on Mondays. My sister, husband, and I try to keep Sundays free so we can have time for ourselves and each other.

On Tuesdays through Thursdays, I generally stay home with my mom, take her to appointments, run errands, and attend to my own appointments when possible. Some of my doctors’ offices already know that I may need to bring her with me. My husband also helps care for her when he gets home from work, giving me a chance to step away and rest.

I still do the majority of the caregiving, but having a family system makes a difference. It allows us to share the responsibility when we can and reminds us that caring for my mom doesn’t mean every other part of our lives has to disappear.

At the stage my mom is in now, I am actively seeking respite care so I can continue getting errands and appointments taken care of now that she is less mobile.

Kyong-Mi:We have decided to celebrate every holiday we can. Whoever wants to come over is welcome, and we hold celebrations at our home because traveling has become difficult for my mom. The world outside can be overwhelming for her, but she enjoys having family and some of our friends around. She may not remember everyone’s names or recognize every person, but she seems to appreciate the company.

My mom’s interest in food and music varies. Korean foods and music connected to her childhood sometimes appeal to her, but it is unpredictable. Something she enjoys one day may not interest her the next.

We have created a simple tradition of giving her something soft, warm, and cozy for the holidays. She also enjoys sweets, so cookies, cake, or pie are often part of our celebrations. We have learned to focus less on creating a perfect holiday and more on making the day comfortable, familiar, and enjoyable for her.

Kyong-Mi:Yes, I have experienced all of those feelings. It hurts when people offer unsolicited advice without understanding what my family and I have already tried. It also hurts when people make assumptions about a caregiver’s behavior without knowing what is happening in that person’s life.

There have been times when I was rushing to a hospital with tears in my eyes because I needed to make medical decisions for my mom and was worried that she might be dying. Being treated aggressively on the road during those moments adds stress to an already frightening situation. I’ve had people refuse to let me switch lanes, or flip me off because I cut into the lane in front of them.

It is also painful when family members repeatedly say they will visit and then don’t show up. I understand that people have their own lives and responsibilities, but caregiving can feel isolating when the support you expected doesn’t materialize.

I struggle with whether to tell my mom that friends have passed away. She may be upset when she hears the news, but she may not remember the conversation the next day. It is difficult to know how to balance honesty with protecting her from repeated distress.

Caregiving has also meant missing family gatherings and funerals in other states because I cannot always leave my mom. My husband has sometimes attended these events without me. I feel guilty when I have to miss work because of family medical leave or an emergency, and I worry about getting sick myself because I know it could mean more time away from work and less ability to care for my mom.

I wish people understood that caregivers can be doing their very best and still feel exhausted, overwhelmed, or uncertain. We need compassion, flexibility, and support without judgment. Sometimes the most helpful thing someone can say is, “What can I do to help?” rather than, “Call me if you need something.” I will never make that phone call.

Kyong-Mi:I’ve learned not to raise my voice or react with anger when my mom repeats herself or struggles to do something. I’ve learned how to encourage her to shower without turning it into a confrontation. Instead of asking whether she wants to bathe, I might say, “All right, Mom, the shower is nice and warm. I have your clothes ready. Let’s go wash your hair.”

I’ve learned to ask my husband or sister for help when I feel frustrated or need to step outside for a while. I’ve also learned patience when answering the same question several times a day.

Most importantly, I’ve learned that my mom genuinely does not remember or understand many of the things that are happening around her. I’m living in her world as much as she is living in mine. I have had to let go of the expectation that she will respond to situations the way she once did.

I’ve also learned to use compassionate redirection, sometimes called therapeutic fibbing, when correcting her would only cause distress without helping her understand. For example, if she says she needs to go home while she is already at home, I might tell her we are getting paid for house-sitting and can go home tomorrow. By the next day, she may have forgotten the concern, and we can enjoy a calmer moment together.

I wish someone had told me that caregiving is not simply about completing tasks. It is about learning a new way to communicate with someone you love, adapting to constant changes, and accepting that what worked yesterday may not work tomorrow.

Kyong-Mi:My mom still makes me laugh with her blunt observations. Sometimes she looks at me and asks, “Why do you look so old? You need plastic surgery and need to dye your hair!” She doesn’t realize I’m much older than she remembers. Other times, she asks why I’m not at school, as though she’s about to scold me for skipping class.

Those moments can be funny because they reveal a familiar part of her personality. She has always had a strong presence, and some of that bluntness still comes through.

I also cherish the fact that she trusts me enough to let me help her. There was a time when she was very particular about her appearance and personal privacy and did not want anyone helping her with everyday tasks. Now she allows me to assist with things she once insisted on doing herself.

That trust means a great deal to me. Even as dementia changes our relationship, I still feel the connection between us.

Kyong-Mi:Breathe, and remember to make time for yourself, even if that means sleeping an extra hour or finding a quiet place to cry. If you have family members who can help, involve them early. Explore reputable dementia organizations and caregiving resources, and learn from other caregivers while remembering that every person’s experience is different. So much is available online, from organizations such as the Alzheimer’s Association and NAMI. There are also experienced caregivers and hospice nurses who share informative videos that can help you get through it.

You are not alone. Millions of families are navigating dementia, and there are people who understand how complicated and emotional the journey can be.

My niece, who is a nurse in Florida, once reminded me that we are fortunate to have had my mom with us into her eighties. She also pointed out that people experience different kinds of losses as they age. Some people retain their mental abilities while their bodies weaken, while others experience cognitive decline while their bodies remain physically strong.

Her words helped me look at our situation differently. Dementia is a heartbreaking disease, and I would never call the suffering itself a blessing. But I can be grateful for the years we have had with my mom and for the opportunity to care for her now. I try to hold on to that gratitude while allowing myself to grieve the changes we are experiencing.

Kyong-Mi:These are the tools that have made the biggest difference in our home.

Every caregiver’s situation is different, and equipment and products that work for one person may not be appropriate for another. My biggest recommendation is to look at the person’s current abilities, anticipate the practical challenges of daily care, and choose tools that support comfort, dignity, and safety for both the caregiver and the person receiving care.