He became his life partner’s caregiver. He changed his diaper, fed him through a stomach tube, turned him regularly to prevent bedsores, and moved his arms to prevent stiffness. He did everything he could to care for the man he loved. But he didn’t always know what his partner needed because his partner could no longer speak.

My patient was a 54-year-old man who had suffered a massive stroke and was now completely bedbound. He could do nothing for himself. His partner believed he could understand what was being said to him, but because of the severity of the stroke, he had no way to express himself.

They were on Medicaid and had very few resources. An assisted living facility was not an option. Family did not come around to help. But his partner loved him deeply and knew he was the only one who would care for him. He spoke about how beautiful his partner was, told me stories, and showed me photos of the life they had shared. He described how vibrant his partner had been, how much fun they had together, and how they had hoped to get married someday.

Then the stroke changed everything.

I wasn’t sure what I could do for him as an occupational therapist. My patient’s partner had already learned to safely reposition him in bed and roll him to change the sheets. He knew how important it was to check his skin for bedsores and to keep moving his joints to prevent pain and contractures. There was almost nothing I could teach him that he wasn’t already doing correctly, and I had only a handful of visits approved.

Then one day, something happened that made me realize he might be able to communicate after all.

His partner had a visit from a social worker, and while they were in another room talking, I stayed with my patient. As I watched him, I noticed that he could follow me with his eyes. Perhaps I could use that. I took two sticky notes and wrote YES on one and NO on the other. I held them up arm’s width apart so I could see his eyes shift from side to side, and explained that I wanted him to look toward YES when the answer was yes and toward NO when the answer was no.

Then I started asking questions. Are you cold? He looked toward NO. Are you comfortable? YES. Are you in any pain? NO. Do you have any siblings? YES. Do they live nearby? NO. Are your parents alive? NO.

With this last question, tears rolled down his eyes.

He was understanding and actually answered every question.

Then I asked some questions about his life. How long have you and your partner been together? Ten years? NO. More than ten years? NO. Five years? NO. Three years? YES. I was surprised by how much information I could get from him simply by asking yes-or-no questions and watching his eyes as he answered. There were several things he “told” me that I could not possibly have known or guessed.

When the social worker left the house and his partner returned to the room, I told him what I had learned. He had three siblings. His parents were no longer alive. They had been together for three years and liked to travel.

He was stunned. “How on earth did you figure all that out?”

I explained what I had done. “This is a new way to communicate with him,” I told him. “You don’t have to keep guessing.”

That simple discovery changed things for both of them. His partner had been doing everything he could to care for the person he loved, but much of that care involved guessing. Was he hungry? Was he in pain? Was he tired? Did he want to watch TV? Now, at least sometimes, he had a way to find out. He was no longer completely trapped in a body that did not work.

We used simple visual choices and his eye movements to give him a voice when he couldn’t speak. His partner could build on the idea by using pictures, words, or other visible choices. This allowed him to communicate through his eyes. It wasn’t complicated. It didn’t require expensive equipment. It simply required noticing that he still had a way to express himself.

I only had a few visits with them, so I never learned how their story ended. But I have never forgotten them.

Sometimes, when we see someone who cannot speak or move, it is easy to assume they cannot communicate. But those are two very different things. A person may no longer be able to speak without losing the ability to understand. They may no longer be able to move, but that doesn’t mean they cannot tell us what they need or want. Sometimes, the smallest movement can become a person’s entire voice.

If you care for someone who seems unable to communicate, don’t assume they have nothing to tell you. They may have a way to express what they need, what they want, or even what they remember without saying a single word. You just have to find their voice.

I am in the middle of this journey with dementia.

In 2011, my family went through an ordeal with my aunt, who was newly widowed as her dementia began. The loss of her husband of more than fifty years was devastating, and years of heavy smoking had left its mark, contributing to two irreversible brain diseases. She eventually moved into assisted living, where she remained until her death in 2013.

Perhaps because of what I had already experienced with my aunt, I found it difficult to work with patients with dementia as a home health occupational therapist. For years, I declined to accept these patients because it was emotionally difficult to witness their families’ struggles. I had already seen firsthand how devastating dementia could be, and then I watched the same progression in other families: a loved one becoming forgetful, confused, combative, depressed, and increasingly dependent on others for everyday life.

The hardest moments were often not the behaviors themselves but the grief on the faces of the children caring for their parents. They would tell me, “She doesn’t even know who I am anymore.” I knew exactly what they meant because I had watched my own family begin to lose my aunt long before we actually lost her.

Writing a book about my aunt’s ordeal was deeply healing, and once again I was able to work with patients with dementia. Then I wanted to learn more by taking continuing education classes I am required to complete for my OT license. I still wasn’t confident teaching families about dementia, but I was better able to cope with treating patients who had it.

Even before my aunt’s dementia, my mother had begun showing signs that something was wrong. In 2008, she began having seizures, and her personality started to change. She gradually became more negative and angrier, and she had no social filter when speaking to others. Whatever came to her mind came out of her mouth, no matter how hurtful it was.

My dad learned to live with it, often trailing behind her to apologize for what she had said to others. At the time, we had no idea what was wrong with her. It wasn’t until 2017, when she was admitted to hospice, that she was diagnosed with Lewy body dementia. We were told it had probably been developing for the previous decade. It was somewhat of a relief to finally have a diagnosis that answered so many questions.

Both my mother and her sister were active women. They did yard work, kept their homes clean, enjoyed crafty hobbies, and socialized with friends and family. Neither worked outside the home, went to college, exercised regularly, nor drank alcohol. Good, home-style Southern cooking was always on the menu.

My mother’s dementia never became severe enough for her to stop recognizing us, but her physical health was greatly affected. She could still laugh at jokes, have brief, superficial conversations, and feed herself, but she was dependent on others for almost everything else and was eventually confined to a wheelchair. It was sad to watch her personality change as her body deteriorated. It was even harder to watch my father cope with the gradual disappearance of the woman he had been married to for more than sixty years until her death in November 2019.

My father joined the Army at 18. He went to college but never earned his engineering degree, instead spending nearly thirty years as an engineer at Texas Instruments. He was exceptionally smart, good with numbers, math, and puzzles. He was creative and handy, enjoyed woodworking, and could repair just about anything around the house.

He never followed an exercise routine, but he was always active. He stayed busy around the house and was never one to sit around watching television. He survived prostate and skin cancers, both without chemotherapy or radiation. Otherwise, he was rarely sick and was never prescribed any lifelong medications. He had no history of stroke, heart problems, or cholesterol issues. Physically, he remained remarkably healthy.

Then my mother’s health declined to the point that she had to move into a memory care unit because she had become too much for my father to care for. For two years, my father faithfully drove to sit beside her for a few hours twice a day.

Three months after she died, our father moved from the independent living community where he had lived for nearly five years to another community, to be closer to his younger brother.

Then, just two months later, COVID brought devastating isolation.

He was still grieving the loss of his life partner, but now he was living in a new building with new people and was suddenly isolated from everyone he knew. He had to eat cold sack lunches alone in his room. Family couldn’t visit. His brother was the only person he could see regularly, and even they had to sneak visits to each other’s rooms.

It was a horrible experience for all of us.

That was when we began to notice his memory decline. Now, at 93, his body is still here, but his mind is not.

He has fallen a few times but has never sustained a serious injury. He can still get down on the floor and back up again. Most days, he can walk without a walker. He has macular degeneration and is slightly hard of hearing, but otherwise, his body has held up remarkably well.

My father was the fourth of five children and is the last survivor. All but one of them developed some form of dementia before they died. His mother lived to be 102 and remained sharp into her late 90s. His father lived to be 94 and had dementia. Dad has now been widowed for seven years and has been estranged from two of his daughters since our mother’s death, for reasons he does not know.

He has no memory of my mother at all. He doesn’t recognize pictures of her at any stage of their lives. He has recently begun forgetting his four siblings. He can still recognize pictures of his parents and the house where he grew up. But he doesn’t remember being an engineer, raising four children, serving in the Army, being a grandpa, living on a farm, or traveling across the country with my mother after he retired.

He doesn’t remember his life.

He knows there are things he should remember but can’t recall. He knows he is missing pieces of his own life. That awareness makes it even more frustrating, because he knows he can’t remember.

This has made me want to learn even more about dementia. What are some of the causes? Is it hereditary? How do our diet and lifestyle affect our risk? How can I prevent it?

The more I learn, the worse my father’s mind becomes.

Having been an occupational therapist for over twenty years, including sixteen in home health, I realize that most of my patients have some form of cognitive impairment or dementia. I am now surrounded by it in both my personal life and my career. As I watch dementia take from the people I love, I find myself thinking about my own children. I don’t want them to someday have to watch me slowly lose the person I am, or to become my caregivers while they grieve the mother they once knew. I want to do whatever I can, while I still can, to protect my brain and preserve as much of my independence and myself as possible.

We cannot control some risk factors for dementia, such as age and genetics, but others are at least partly within our control. Physical activity, nutrition, social connection, sleep, cardiovascular health, reducing exposure to plastics and toxins, avoiding smoking and excessive alcohol use, and continuing to challenge our minds may all play a role in maintaining brain health. Research cannot guarantee that changing these factors will prevent dementia, but the evidence increasingly suggests that healthy lifestyle choices can support brain health and may reduce our risk.

As I studied dementia, three areas especially caught my attention: what I’ve learned about cholesterol and brain health, the value of staying active, and the importance of lifelong learning.

We hear so much about lowering and avoiding cholesterol, but I’ve learned that its role in brain health is far more important than I once thought. The relationship among cholesterol, cardiovascular health, aging, and dementia is still being studied, and it has made me question whether lower is always better. I continue to learn about cholesterol and pay closer attention to how it fits into my diet and overall health.

Another lesson has been the importance of movement. I’ve always understood that exercise is important for physical health, but I’ve come to appreciate how much it matters for our mental and brain health as well. We don’t necessarily need a strenuous workout. Walking, gardening, stretching, dancing, or simply staying active throughout the day can help keep our bodies and minds engaged.

My favorite, and perhaps most important, lesson is to keep learning something new throughout our lives. I’m not talking about simply staying busy or doing the same things we’ve always done. I’m talking about learning something we don’t already know, something that demands our attention, practice, mistakes, and repetition. When we learn a new skill, our brains have to work in ways they aren’t accustomed to, and that is the kind of mental challenge I want to keep giving my brain.

That realization made me think about my father. He was a brilliant man and was always busy, but he wasn’t necessarily learning new things.

I don’t know whether that had anything to do with his dementia, and I certainly don’t believe there is a single explanation for what happened to his brain. Dementia is complex, and many factors are involved. But watching what happened to him has made me much more intentional about how I want to care for my own mind while I still can.

So, I bought a keyboard.

I took piano lessons as a child, but I never stuck with them. Today, I can’t play or read music. I’m starting from scratch, which is exactly what I want. I want to learn something I don’t already know. I want to challenge my brain, struggle a little, make mistakes, and eventually improve.

Maybe it will help protect my brain. Maybe it won’t.

I think there is something to be said for simply continuing to learn. Learn to cook something new, try another language, pick up knitting, learn an instrument, or take on a skill you have never tried. I now encourage my patients to do the same. We may not be able to control whether dementia finds us, but we can keep giving our brains reasons to stay curious, challenged, and engaged.

Watching my father lose the memories that made up his life has taught me something I don’t want to forget. We don’t know how much time we have with a healthy mind. So, while I still have mine, I’m going to use it. I’m going to keep learning.

The day we finally moved our father into a memory care group home was highly anticipated by everyone involved. After years of watching his dementia progress, we knew the time had come. This was not a decision anyone made lightly, but we also knew he needed more support than his current assisted living facility could provide and moving him closer to my retired sister made sense.

The manager of the group home wanted us to arrive on a Wednesday for lunch because that was when the staff shift changed for the week. She explained that she wanted everyone to meet him. Hospice would be there and the other residents would be gathered in the dining room for lunch.

A huge warm welcome to help him feel loved and accepted from the moment he walked through the door. At the time, it sounded like a wonderful idea.

Until it wasn’t.

As a home health occupational therapist, I have spent years working with people living with dementia. I have learned that one of the most important things we can do is protect them from feeling overwhelmed. Their brains are already working hard to process the world around them. Too many questions, too many choices, too many people, and too much noise can quickly become confusing and frightening.

When we walked my dad through that front door, we were immediately greeted by several people. A caregiver, the group home manager, and two people from hospice all welcomed him.

Everyone was kind. Everyone was smiling. Everyone was trying to help.

But my dad had no idea what was happening.

The manager quickly approached him with a huge smile, telling him how excited everyone was that he was coming. Within moments, she guided him toward the dining room where all of the residents were eating lunch.

The problem was that she had never met my father before. She didn’t know his abilities or his limitations. She didn’t know that although his memory was declining, he could still walk by himself and sit down in a chair without assistance.

Thinking she was helping, she pulled his chair out, wrapped her arms around him, and started guiding him into the seat.

“He doesn’t need any help,” my sister gently explained.

Dad looked confused. He had just walked into a building he had never seen before, surrounded by people he had never met, and now strangers were physically guiding him as if he couldn’t move on his own.

Then the questions started.

The manager sat down beside him and began asking questions so quickly that I was having trouble following along myself.

“Would you like some water or some tea? We’re about to eat in a few minutes. Or would you like to see your room first? Everybody’s been waiting to meet you. Let’s go introduce you to some people.”

I watched my father’s face.

I knew immediately that he had no idea what she was asking.

I looked at her and said, “You just gave him way too many options.”

After just a few minutes, she walked him to the next table to meet four women who were relatively coherent and could hold a conversation. She happily introduced him, “This is Jim, our newest resident.” Then, one by one, she introduced them by name.

One woman immediately asked him, “Do you like to play games? Do you like Uno? Do you like doing jigsaw puzzles?” He had no idea what she was talking about. The poor man was so confused, and there was so much commotion going on in that dining room, I don’t think he could even understand what she was saying.

Thankfully, my sister intervened, “Let’s go see your room, Dad.” We walked him to his new home, which my sister and brother-in-law had already set up with his own furniture and belongings. It was a single room with his own private bathroom. His familiar twin bed, recliner, nightstand, and mini fridge were all in place. He had a nice window that looked out to a pasture. It was a nice room. But it’s not what he had been used to for the past three years.

It was different and confusing.

Within 10 minutes of being in his new room, a hospice nurse came in to evaluate him. She gave my poor father a cognitive exam while he was in the middle of a shocking, life changing experience. Of course, he couldn’t answer the questions. With each question she asked, I watched him become more visibly anxious and confused.

Everyone was focused on what they needed to accomplish rather than what my dad was capable of processing at that moment. I don’t believe anyone had any bad intentions. They were all just excited and wanted him to feel welcomed. But dementia changes the way the brain processes information. What feels like a simple conversation to us can become an impossible task for someone who is confused and overwhelmed.

When we ask too many questions at once, we are unintentionally creating pressure for someone whose brain is already struggling to process what is happening around them. The person with dementia has to figure out where they are, who these people are, what they are asking, and how they are supposed to respond.

All at the same time.

I was surprised that someone managing a memory care home did not seem to recognize how quickly my father was becoming overstimulated. But I also knew this was not just about one person or one facility. This was a reminder of how easily we can overwhelm someone with dementia when we focus on what we want them to experience instead of what their brain can handle.

Taking somebody with dementia out of their familiar environment is one of the hardest things to do, but it is often necessary for their safety. We can help make the transition smoother by making it simple, having less people, fewer questions, and minimal choices to make.

An easier transition could be to move them when everyone else is napping. Let them get adjusted to their new surroundings without having to make any decisions. Request that staff hold off on questions, evaluations and paperwork for a day, or at the very least a few hours.

Moving someone with dementia is already a tremendous adjustment. The goal isn’t to make their first day exciting. It’s to make it feel safe, familiar, and manageable.

Tips for Moving Someone with Dementia:

• Talk to the staff before the move. Don’t be afraid to speak with the manager or caregivers ahead of time and explain exactly how you want the transition handled. Tell them what your loved one can do independently, what tends to overwhelm them, how they communicate best, and what you want the first few hours to look like. You are not being difficult or demanding. You know your loved one better than they do, and your input can help the staff create a calmer, more successful transition.

• Speak slowly and calmly. Use a warm, reassuring voice and simple language. Introduce yourself and explain what is happening using short, simple words.

• Give them time to process. Ask one question at a time and wait. Someone with dementia may need much longer to understand what was said and think of a response. Don’t fill the silence by repeating the question or asking another one.

• Limit the choices. Too many options can create confusion and anxiety. Offer only one simple either or choices at a time.

• Position yourself at their level. Sit in front of them so they can see your face and make eye contact. Not knowing where a voice is coming from can be confusing.

• Reduce stimulation. Avoid a crowded room full of unfamiliar people. Loud conversations, multiple people talking, television, music, and constant activity can make an already confusing situation much harder to process.

• Let them observe before expecting them to participate. Give them time to watch and take things in. They don’t need to meet everyone, answer questions, join an activity, or understand their new surroundings immediately.

• Don’t assume they need physical help. Dementia does not automatically mean someone has lost their physical abilities. Observe what they can do and give them the opportunity to do it themselves.

• Create familiarity whenever possible. Have their familiar furniture, photographs, blankets, favorite chair, or other meaningful belongings ready in their room before they arrive. Familiar objects can provide comfort when everything else feels unfamiliar.

• Consider the timing of the move. If possible, choose a time when the environment is quieter and there are fewer people around. The goal is to make the first few hours as calm and predictable as possible.

• Don’t try to accomplish everything on the first day. Evaluations, paperwork, introductions, activities, and questions can wait when they aren’t urgent. The first priority should be helping the person feel safe in their new surroundings.

Today would have been my Grandma Bessie’s 115th birthday.

She was one of my favorite people on the planet. Although I have carried the memory of her birthday party and the night that followed for nearly forty years, there are parts of that story I can still see as if they happened yesterday.

This is her story.

My grandma, Bessie, was one of my all-time favorite people. Born August 11, 1911, one of fourteen children, she was short, with red hair and was well-endowed. She became a nurse in her twenties, married, and had three kids: our mom, Louise, her sister, Leigh, and their little brother Richard.

One of my favorite stories she would tell us about our mother was when she and Leigh were teenagers they were standing face to face arguing. To stop the argument, Grandma stepped in between them just as Louise raised her hand to slap Leigh across the face and slapped Grandma instead. Oops!

Grandma made the best chocolate chip cookies, loved stripping the turkey carcass to the bone after Thanksgiving, snorted when she laughed, and could tell a dirty joke better than anyone. She never complained about anything. I mean, nothing, ever. She didn’t complain about growing old, whine about aches and pains, or gripe about waiting on Grandpa for over forty years. She was awesome!

Our Grandpa died in 1984 from multiple diagnoses, including heart failure, cancer he never knew he had, and ultimately, a massive stroke.

After Grandpa passed away, Grandma wanted to travel and enjoy life without the burden of caregiving. However, severe arthritis in her joints forced her to use a cane. Determined to travel without pain or dependence on the cane, the very first thing she did was get both of her hips replaced.

In early 1986, I was twenty-one, still living with my parents, and in my second year of college. Unknown to our family, Grandma had discovered a lump in her breast. She kept it a secret for several months, but in a moment that she came to regret, she told her daughter-in-law, who immediately told Aunt Leigh.

Grandma and Leigh shared a close bond, lived less than two hours apart and spent lots of time together. Leigh was not about to lose her mother so soon after her father’s death, so she immediately took her mother to the doctor.

Grandma had told me that after she heard the doctor say, “You have breast cancer,” she wanted to “take these long titties and slap him across the face” as she pretended to take one boob in each hand and slap them back and forth.

Although she sometimes wished she had kept the lump to herself and simply let nature take its course, she followed her doctor’s advice and endured multiple rounds of radiation. The treatment triggered one of the most severe cases of shingles her doctor had ever seen. What began as a painful rash soon developed into fluid-filled blisters. By August 1987, because of the radiation treatments, she had third-degree burns covering more than half of her torso, extending under her right arm and down toward her leg.

Louise, Leigh, and Richard took turns caring for their mother in her Kansas home. It was the only time I ever saw my grandma complain about anything. Watching her suffer as she sat in Grandpa’s recliner was heartbreaking. She sat there lightly covered with a sheet because the pain of anything touching her skin was unbearable.

On August 9, just two days before Grandma’s seventy-fifth birthday, we surprised her with a celebration she would never forget. My sister, Kayla and I drove up with Dad, arranging for her three surviving sisters to fly into town, joining their brother, sister-in-law, her three children, in-laws, and grandchildren. Her home brimmed with love and laughter that day, the walls echoing with memories and joy. Surrounded by everyone she held dear, Grandma laughed, hugged, and reminisced as if time had gracefully paused just for her, one perfect day, suspended in the warmth of family.

That night, Kayla and I tucked Grandma into bed, standing beside her as she smiled at us. “It was such a beautiful day,” she whispered. “It was wonderful to see everyone I love, and I am so glad you girls are here with me.”

A few hours later, Kayla, was laying on the couch just outside Grandma’s room, not yet asleep, when she heard footsteps crossing the living room. She listened as Grandma moved into the kitchen, the faint rattle of a pill bottle breaking the silence. A glass of water filled. The quiet shuffle of her return. The bed creaked as she lay down once more. Kayla laid still and waited, but Grandma never spoke. Kayla fell back to sleep.

An hour later, Kayla awoke to the sound of someone coughing. She opened her eyes and saw Grandma sitting on the edge of her bed, her frail silhouette barely visible in the darkness. A wave of unease washed over Kayla as she thought, “I should check on her. I should see if she needs help.” But she couldn’t move. She later said that it had felt “like an elephant was sitting on my chest.” Helpless, she drifted back to sleep.

The next thing she knew, a sharp, panicked voice shattered the quiet. Aunt Bella, Grandma’s oldest sister, was hovering over Grandma, her cries filled with desperation. “Bessie! Bessie! Bessie!” The urgency in her voice sent a jolt through Kayla’s body.

Heart pounding, Kayla sprang off the couch, fumbling for the light switch as dread closed around her. The room was suddenly too bright, too harsh. Grandma lay there, unmoving.

Kayla’s voice broke as she screamed up the stairs, “Uncle Richard! Dad! Uncle Leeland! Something’s wrong with Grandma! She can’t breathe!”

The ambulance arrived within minutes, but every second felt like an eternity. Grandma was gasping, her voice trembling with fear as she begged for oxygen. The emergency team rushed in with a gurney and an oxygen tank, but something was wrong. The mask was placed over her face, and the tubing connected, but nothing came.

Someone had grabbed the wrong tank. It was empty.

Panic surged through me as Grandma’s breaths grew shallower, her pleading eyes filled with terror. I bolted out the door, running through the darkness to the ambulance in the driveway. My fists pounded against the back door as I screamed, “She needs oxygen! They brought the wrong tank! She can’t breathe!”

Grandma was still fighting inside the house, but I felt time slipping away.

The next thing I remember was Kayla and me standing on the front porch, watching as they carried our beloved Grandma out on a gurney. Her body, once so full of warmth and life, jiggled as they lifted her into the ambulance. Uncle Richard climbed in and sat beside his mother, his face tight with fear, just before the doors slammed shut.

Less than an hour later, our father answered Richard’s phone call. Grandma was gone. But Kayla and I already knew she had left us the moment they carried her away.

I stood frozen in the living room, staring into the kitchen, where my mother stood before her sister and had to say the words no one wanted to hear. “Mom’s gone.”

Leigh broke down, hysterical, her grief so raw and unbearable that my mother had to slap her sister across the face to stop her hysteria. This time, there was no Grandma to step in and stop her.

The next day, there was a viewing of Grandma’s body. The weight of her death was unbearable, and neither Kayla nor I wanted to go. The image of her lifeless body, pale face, and blue lips was already burned into our minds. But after talking it through, we decided to go, for our family, for ourselves. And in the end, we were grateful we did.

Instead of that haunting last image, we now had a softer, more peaceful memory. Grandma lay there with her hair perfectly curled, pink lipstick brightening her face, her pearl necklace resting gently against her skin. She wore the dress from a four-generation photo shoot taken just two years earlier. It was Grandma, Louise, Kayla, and her son, Grandma’s only great grandchild. She had been carefully dressed not just for burial but for remembrance.

On August 11, 1987, what should have been her seventy-fifth birthday, we buried our adorable, funny, precious Grandma. Her entire family stood by her graveside, the weight of loss settling over us like a heavy, inescapable fog.

Two days after her death, Uncle Richard found an empty prescription bottle tucked away in the kitchen’s desk drawer, hidden from everyone. It was a heart disease medication that no one ever knew she took. Grandma had kept her illness a secret.

Nearly four weeks had passed before Kayla found the courage to tell Mom and Dad that she had heard Grandma take pills that fateful night. Mom’s response was immediate and firm. “Do not ever tell Leigh what you heard. She must never know. She won’t be able to handle it.”

She had lived her last day surrounded by the people she loved most. She laughed. She hugged us. She told us how happy she was that we were there. And then, sometime during the night, Grandma made the decision that she could not live with that pain anymore.

Over the past forty years I have wondered what she was thinking that night. I will never know. But I do know this: on the last day of her life, she was surrounded by the people she loved, and she knew how much we loved her.

I originally shared Grandma’s story in my book, For All She’s Worth. Today, on what would have been her 115th birthday, I wanted to tell her story again, because some people and some stories are worth remembering.

As a home health occupational therapist, I spend a lot of time asking questions. I ask about a person’s abilities, their family, their medical history, their equipment, and the people who support them. But I’m not just gathering information for paperwork. I’m trying to understand the person sitting in front of me: what they remember, what they can explain, and where they need others to help fill in the gaps.

One day, I walked into a patient’s home, and the family proudly pointed to two large posters hanging on the wall. Written neatly in black marker was nearly everything I needed to know. One poster listed every family member, emergency contact, physician, and medical provider along with their phone numbers. The second summarized the patient’s medical history, including diagnoses, surgeries, hospitalizations, rehabilitation stays, and other important health information. It was one of the smartest ideas I had ever seen.

Those posters saved time, but they also served another purpose. I could still evaluate the patient’s memory by asking questions and comparing the answers with the information displayed on the wall. It gave me a quick reference while allowing me to assess cognition in a natural way. I left that visit thinking what a wonderful idea it was, never realizing it would later inspire something I would create for my own father years later.

For most of his life, my dad carried a small folded piece of paper in his wallet. On it were the names of their four daughters and six grandchildren, along with our birthdays. As the years passed, he began adding other important milestones to the back. He wrote down the year he graduated from high school, entered the Army, married my mother, retired, and eventually moved to the country. It became his personal timeline, a simple reminder of the important moments that made up his life.

As my parents grew older and moved into an independent living community, Dad continued carrying that little piece of paper everywhere he went. Even after my mother moved into memory care and he was left living alone, it stayed tucked safely in his pocket. But as his macular degeneration worsened, he could no longer read the tiny handwriting that had helped him for so many years. I knew how frustrating that must have been, so I decided to give him something much larger.

The story of his life displayed on his wall for everyone to see.

The first poster I created was a family tree. It included his parents, siblings, their spouses, birth dates, and death dates. Beneath that was my mother’s side of the family, followed by all of his children and grandchildren. The second poster recreated the little piece of paper he had carried for decades, but in large print. Beginning with his birth, it followed the major events of his life through his childhood home, graduation, military service, marriage, the births of his children and grandchildren, his career, retirement, and each home they lived in over the years.

As his memory declined, he frequently asked where everyone lived. Since he was now living in an unfamiliar city, he struggled to picture where family members were in relation to him. So, I created a third poster: a large map of the Dallas-Fort Worth Metroplex with every family member labeled where they lived. It gave him a visual way to reconnect with places that had once been so familiar.

Those three posters quickly became some of his favorite possessions. He proudly showed them to other residents who visited his room, and staff members often asked if they could show them to other families looking for ideas to help loved ones with memory loss. The posters became much more than decorations. They became conversation starters. They reminded him of people, places, and events that had shaped his life. As his siblings passed away, we quietly added their dates of death and ages to the family tree, allowing the posters to continue telling his story even as his memory slowly faded.

Today my father is 92 years old. He recently moved into a small group home with only twelve residents. Physically, he is doing remarkably well. He still walks independently, dresses himself, and feeds himself. Despite having macular degeneration, he can still see fairly well, and his hearing remains surprisingly good. But dementia has taken almost everything else. He no longer remembers my mother, recognizes only two of his children, one of his six grandchildren, and he can barely carry on a conversation.

When my sister packed his belongings for the move, she carefully took down the posters that had followed him for so many years. The map stayed behind. His memory had declined to the point that he could no longer understand where everyone lived in relation to him. But the family tree and timeline went with him, and they were soon hanging in his new room, still telling the story of a life he could no longer tell on his own.

Soon after he moved in, one of the caregivers suggested a hospice evaluation. Given his age, they knew he would qualify. The evaluator entered expecting to meet a frail man whose body was failing. Instead, he found a remarkably healthy 92-year-old whose greatest challenge wasn’t his body but his memory.

Then he noticed the posters.

Instead of asking questions my father couldn’t answer, the evaluator began using the posters to guide the conversation. He asked about his Army service, his childhood, his family, and the places he had lived. Every so often, a memory surfaced. For a few precious moments, they weren’t simply completing a medical evaluation. They were talking about my father’s life.

That was something I had never anticipated when I made those posters all those years ago. I thought they would help him remember. I never imagined they would also help complete strangers get to know the man behind the diagnosis.

If someone you love is receiving home health services, living with memory loss, or has an extensive medical history, consider creating something similar. It doesn’t have to be elaborate. A family tree, a timeline, a medical history, a list of phone numbers, a collage of photos, or a map showing where loved ones live can become valuable tools for caregivers, healthcare providers, and family members alike. More importantly, they may spark conversations that would never have happened otherwise. Sometimes the simplest reminders preserve far more than facts. They preserve connections.

Following my post, He Fell in a Hotel Room. No One Knew He Needed Help, one of my readers, who publishes on Substack as Dame Patsy Purrlina OAP, shared her husband's story with me. With her permission, I'm sharing her words because they reveal lessons every family should hear.

If my husband falls in a corridor of his nursing home, he has to wait until someone comes along. He is at high risk of falls. He has Parkinson’s and dementia.

The home claims there is someone on duty in each corridor. Not if they’re on break. Nor at night. And the person in the next corridor feels under no obligation.

When I’ve asked for help, I’ve been told to wait until the right person is back from break. This could be forty minutes at a meal break.

There’s a call button in his bedroom that my husband has never known exists. None in the corridors.

My husband has fallen in the lounge diner as he was not helped to get out of the heavy, unstable, unsuitable dining chairs. He broke his pelvis, which was not picked up for over 24 hours, as the staff lied to the paramedics about how he fell. They said he fell to his knees and bumped his head. X-rays of head and legs were clear.

On return to the home, a witness told me he’d actually fallen straight on his back, pushing up from the chair which broke under him. He had broken his pelvis in six places. He was in massive pain; the home returned him to A and E (Emergency Department or ER) as he wasn’t peeing……

The hospital raised safeguarding complaints against the home, but had to discharge him back there. Over a year later, and numerous failings, Court may take another year to decide if he can be moved elsewhere.”

That last sentence gave me chills. “Court may take another year to decide if he can be moved elsewhere.”

I couldn’t understand why a court would have to decide where her husband lived, so I asked.

Her reply, “His money has run out. Social Services pays a reduced fee, so they decide where he stays. If we disagree, it goes to court.”

As heartbreaking as that answer was, it wasn’t the whole story. She had shared another piece of it in a comment on my story, “Don’t Talk About That Right Now, Mother.”

My husband went from memory problems (mild cognitive impairment) to moderate dementia in less than four months. Three of those months included two stays in the hospital. After the first stay of eight weeks, he spoke to a solicitor (an attorney) and made an appointment to create a Lasting Power of Attorney (similar to a Durable Power of Attorney and Medical Power of Attorney in the United States) for health and finances, naming me to make decisions on his behalf.

She saw him in a noisy, crowded hospital with no privacy during his second stay. She couldn’t go ahead as they couldn’t understand each other.

I went ahead with my appointment. We’d only been married just over two years after thirty years together.

Three weeks later, the doctors insisted on a nursing home placement. He was just retired. I had recently been made redundant. (laid off from work)

Two years later, he is like a four-month-old. Not yet 70.

I don’t know where our original wills are. I managed to get copies from the solicitors’ firm thirty miles away, after a twenty-year gap. I don’t know where our original copy house deeds are. I got more from the Land Registry. (The UK's official property records office.)

The house is still a complete mess. While I'd been going to work or out shopping or whatever, when he was sick and off work with Parkinsons, in the final year before retirement, he had been “refiling” paperwork he had had for up to fifty years. Often in the garage, his sole domain. I never went in there.

I found my wedding shoes in a random bag in a heap in the garage under the lawnmower.

When there’s so much stuff, all in random places, there is no room to sort it out. I started by throwing out stuff I didn’t want.

I even found bags in the garage full of floor sweepings…..

The documents were never signed before his condition changed. An opportunity that seemed certain just weeks earlier was suddenly gone.

We all believe there will be time.

Time to organize the paperwork.

Time to sign the documents.

Time to ask the difficult questions.

Time to make the hard decisions.

But dementia doesn’t wait.

Neither do falls.

Her two comments weren’t really about a fall or power of attorney. They were about how quickly life can change, and how the decisions we postpone today may become the decisions we no longer get to make tomorrow.

Legal planning, financial planning, and emergency planning aren’t separate conversations. They’re all part of protecting the people we love before a crisis makes those decisions for us.

Thank you, @Dame Patsy Purrlina OAP, for trusting me with your story and allowing me to share it in the hope that another family might be spared some of the heartache.

Falling at home is one problem. But what happens when he falls alone in a hotel room?

At ten o’clock one night, my husband found himself stranded on the floor of a hotel room, unable to reach a phone. After more than forty years in a wheelchair, he had learned to solve just about every problem life threw at him, but that night, alone in a hotel room hundreds of miles from home, he had only one option.

My husband, Steve, has been a quadriplegic and in a wheelchair for more than forty years, and we have been together for ten of those years. Steve is training to become a motivational speaker because he enjoys sharing his experiences with medical students from the patient’s perspective. While we were living in Arizona, he enrolled in a two-week training course in San Diego, so we packed everything we would need and headed west.

We had been on the road less than fifteen minutes when my phone rang. It was my sister in Texas.

“Mom is declining fast,” she said. “She probably won’t make it through the week.”

Instead of turning around, we continued to San Diego. Once we arrived, I unpacked everything and rearranged the hotel room so Steve could navigate it independently because I had no idea how long I would be gone. Then I flew to Texas to be with my family.

Steve is fully capable of managing his personal care on his own, but what normally takes us a fraction of the time takes him five or six hours without me. Our second-floor hotel room had a kitchenette, a living area, a king-size bed, and an accessible bathroom. It seemed like the perfect setup.

A few nights after I left, Steve finished his bowel program and rolled his shower wheelchair back into the bedroom. As he transferred back into his power wheelchair, his legs suddenly went into spasm. Because the shower chair does not have a seatbelt, the spasm threw him to the floor. It was only then that we discovered something we had never considered. The room was accessible as long as Steve stayed in his wheelchair.

Ironically, one of the changes I had made to improve the room’s accessibility ended up helping in a way I never intended. I had pushed the ottoman against the wall to get it out of his way; however, it ended up giving Steve something to prop himself against after he fell. The room had failed him in one way, but that small change made waiting for help more manageable.

Now, he was resting against an ottoman, but his cell phone was still in the bathroom, and the room phone sat on the nightstand just six feet away, completely out of reach. Steve looked around the room, hoping something would spark an idea. Then he remembered how he had gotten someone’s attention years earlier when his chair lost all power in his apartment.

Hoping someone was staying in the room below him, Steve removed the footrest from his shower chair and began pounding it against the floor. After about twenty minutes, someone in the room below pounded on their ceiling in obvious irritation.

“Good, at least somebody hears me,” he thought.

He kept banging for another fifteen minutes until the hotel room phone finally began to ring. Although he couldn’t answer it, he knew someone had heard him and called to complain, so he kept making as much noise as he could. Eventually someone knocked on the door, and all Steve could do was yell, “Help me! I’ve fallen out of my wheelchair, and I need help!”

The hotel staff explained that they were not allowed to enter a guest’s room or lift a guest from the floor because of liability concerns, so they called 911. Thankfully, Steve wasn’t injured. He was, however, a little embarrassed because he hadn’t had a chance to put his pants back on. After more than forty years in a wheelchair, though, awkward situations have become part of life, and he has learned to laugh at moments that would mortify most people.

For years, I always preferred a first floor room because it made unloading the van and all of Steve’s equipment much easier. After that night, I changed my mind. I was grateful we had been assigned a room on the second floor because if no one had been sleeping beneath us, I don’t know how long Steve would have remained on that floor. No one would have heard him pounding. No one would have knocked on the door. No one would have called 911.

That experience changed the way we think about accessible travel. We still look for accessible rooms, but now we also think through the “what ifs.” What if he falls? What if he can’t reach his phone? What if I’m not there?

We still don’t have a perfect answer for every situation, but we have learned one important lesson. Steve keeps his iPhone with him at all times, and we discovered there’s a setting that allows Siri to respond even if the phone lands face down. It’s a small detail that most people would never think about, but in an emergency, it could make all the difference.

If you or someone you love depends on a phone to call for help, don’t assume voice activation will work the way you expect. Test it. Drop the phone on a bed, on the floor, even face down, and make sure Siri can still hear you.

This fall taught us the importance of an emergency communication plan. Another unexpected fall taught us what to do when help arrives but lifting him isn't an option.

You can read that story here: I Couldn’t Lift My Husband Off The Floor

When I first shared this story in February 2026, I was new to Substack, and only a small group of readers had found my writing. Since then, many more have joined me, and I’ve realized that many of you haven’t read some of the stories that have shaped my writing about caregiving, family, and protecting the people we love.

So today, I’m bringing this story back for those who may have missed it. It is a personal story, shared quietly and with care, about loss, preparation, and what helped protect my children when it mattered most.

We didn’t do everything right. But we did enough.

Their father had been having trouble breathing for months.
It came on slowly, so he ignored it.
Until he couldn’t.

A trip to the ER turned into a hospital admission just after Thanksgiving. A diagnosis that no one expected: he needed open-heart surgery.

We had only a few days to prepare.

I called my neighbor, who had worked for an estate attorney for over 20 years.

“My kids’ father is scheduled for open-heart surgery in a few days,” I said. “Can you please help him get his will set so my kids will be protected if something happens to him?”

Within two days, everything was in place.

He had the surgery but was discharged to rehab too soon. His oxygen levels remained low, his blood pressure unstable, and he struggled to get around. He ended up back in the ER and declined quickly.

In mid-January, he passed away.

His death was sudden and shocking. But because we had acted quickly, without waiting, everything that followed, legally and financially, went smoothly.

Their father owned his home outright, along with three acres that included his childhood home. His parents had passed long ago, and his only sibling had died years earlier. Everything had passed to him.

His wishes, clearly stated before surgery, were simple:

“My kids get my house. Split everything else equally between my kids and my nephew.”

To avoid probate, the attorney set up a transfer-on-death deed. My kids inherited his house, and all three inherited the three acres equally, just as he wanted.

No court delays. No confusion. No fighting. Just clarity.

At a time when nothing else felt steady, that clarity mattered.

Nothing about this was easy. But because we handled the paperwork before we ran out of time, the transition after their father’s death was seamless. And in the middle of grief, that mattered more than anyone could imagine.

And in the end, it was enough.

This story remains one of the reasons I believe we cannot wait until a crisis happens to start difficult conversations about safety, caregiving, and protecting the people we love.

Getting your affairs in order isn’t about expecting the worst. It’s about protecting those you love.

If you’d like to read the story that came before this one, “He Survived the Crash. His Family Didn’t Survive the Aftermath” shares the tragedy that forever changed my ex-husband’s life and ultimately led to the lessons in this story.

Preparing ahead of time gave our family peace of mind during one of the hardest seasons of our lives. Stories like this remind me why preparation matters. If you’d like to learn more about protecting your loved ones before a crisis occurs, including through my book For All She’s Worth and the SAFE Care at Home workbook, visit The Heart Behind the Care.

What is a Transfer on Death (TOD) deed? A Transfer on Death (TOD) deed allows a property owner to name a beneficiary who will receive real estate after their death without going through probate. Unlike a traditional transfer, the owner maintains control of the property during their lifetime and can change or cancel the deed if needed. Rules vary by state.

Learn more here: How a Transfer on Death Deed Works

Disclaimer: All content is provided for educational and informational purposes only and is based on my personal and professional experience as an occupational therapist. It is not intended as legal, medical, or financial advice.

Originally published in February 2026. Republished for new readers.

When we moved into our new house, we had only been there a few weeks when my husband fell out of his wheelchair while transferring to his shower chair.

We had met a few of our neighbors, but we barely knew them. My husband’s spine is like a slinky because of his spinal cord injury. Even though I am an Occupational Therapist, it is impossible for me to lift him enough to get him back into his wheelchair.

He wasn’t hurt, and we didn’t want to call 911. With no other choice, I ran to the house of a neighbor we had met a few times. He was a retired police officer, and I knew he was strong enough.

He gladly came over to help, but afterward I couldn’t stop thinking about what had happened.

What if he wasn’t home next time?

I couldn’t depend on a neighbor every time my husband fell. I needed a better plan.

A few months later, that plan was put to the test.

I had left to run a few errands when my phone rang as I turned onto our street. The voice on the other end was faint and muffled.

“Carol...I need you to come home. I fell and can’t get up.”

Steve had called me through Alexa, which we had bought for exactly this reason. Because he is a quadriplegic, if he falls to the floor, he has very little ability to move. If he lands in the wrong position, he may not be able to reposition himself or get the leverage he needs to move. Alexa gave us both peace of mind because he could always call me or 911 if he needed help.

“I’m almost home!” I told him.

I hurried through the front door, not knowing what I was about to find.

Steve spends part of every day in a standing frame, a device that slowly raises him from sitting to standing. Standing helps preserve his bone density, stretches his hips and abdomen, and is an important part of staying healthy after decades in a wheelchair.

Normally, he raises himself very slowly so his blood pressure has time to adjust and his legs don’t go into severe spasms.

That day he was in a hurry.

He pressed the button too quickly. Before his body had time to adjust, his legs suddenly spasmed, and he collapsed.

When I found him, both knees were completely bent underneath him. His feet were wedged against his 400 pound power wheelchair, which hadn’t moved an inch. His arms were draped over the standing frame above his head. He looked painfully trapped.

“Holy cow! How long have you been like this?” I asked.

“About twenty minutes,” he said. “I thought you’d be home sooner. I didn’t want to bother you.”

I had absolutely no idea how I was going to get him out.

I ran to the retired police officer neighbor.

No answer.

I tried the next neighbor.

No one home.

Then another.

Still no one.

I walked back into the house telling myself, “Okay...calm down. You’ll figure this out.”

I climbed into Steve’s wheelchair and slowly backed it away from him, inch by inch. After every tiny movement, I stopped to reposition his legs, feet, or arms so he wouldn’t collapse against the metal frame.

Eventually, he was free.

He was still lying on the floor, but at least he wasn’t trapped anymore.

Now, the next problem to solve.

How in the world was I supposed to get a six-foot-two man, who couldn't help me at all, back into his wheelchair?

Then I remembered something.

We only had two bedrooms, so whenever guests visited, we inflated twin air mattresses in the living room.

I grabbed one from the closet, spread it beside Steve, and carefully rolled him onto it. Then I plugged it in.

Seven minutes later, he was no longer on the floor.

The inflated mattress had lifted him 21 inches, bringing him almost to the height of his wheelchair. Now, I wasn't fighting gravity. I had enough height to help him transfer rather than lift him off the floor.

One more challenge remained. Because the air mattress was so lightweight, I was afraid it would slide out from underneath him when he shifted to his chair, so I shoved it firmly against a bookshelf to keep it from moving. Then, using a transfer sliding board, I was finally able to get him safely back into his wheelchair.

It worked!

Since then, I’ve only had to use that trick one other time.

But knowing we have a way to get him safely off the floor without depending on neighbors or calling the fire department has given both of us tremendous peace of mind.

The air mattress is just a tool. The real gift is knowing we have a plan.

Of course, every fall is different. If you suspect a serious injury, such as a broken bone, head injury, or neck injury, do not try to move your loved one. Calling 911 and waiting for trained help is the safest choice. In our situation, Steve was not injured, and because of his spinal cord injury and our experience with transfers, I knew we could safely work together to get him off the floor.

But for caregivers, the fear after a fall is real. Having a plan before it happens can make the difference between panic and knowing what to do next. It doesn’t mean you won’t be scared, but it gives you something every caregiver needs in that moment: a next step.

Now, when I visit my home health patients, caregivers often tell me about the panic they feel after a loved one falls. They don’t know how they’ll ever get them back up. They are tired of calling 911, or they risk injuring themselves trying to lift someone who has fallen.

I always smile and tell them my little secret.

An inexpensive twin air mattress.

More than once, I’ve watched a caregiver pull out their phone before I even leave the house and order one.

Not because they expect to need it.

But because, like us, they want the peace of mind that comes from knowing it’s there...just in case.

We were caring for my aunt from 500 miles away.

Like so many families in that position, we were doing everything we could from a distance: making phone calls, checking in, coordinating help, and trying to make the right decisions. We believed that if we stayed involved and found someone local through a reputable company to help her, we could manage things safely.

We did not understand how easily things can drift out of your control when you are not physically present.

At first, everything seemed stable. There was relief in finally having someone there with her. Someone who could help with daily needs, provide support, give us updates, and send pictures. From where we stood, it looked like things were going well. She was safe, happy, and living in her own home, exactly as she had always hoped.

But over time, the updates started to shift.

Family members heard different versions of the same story. Excuses were made for changes in her behavior. Decisions were made without discussion. Access and influence expanded in ways that did not raise alarms in the moment, but made sense later when we looked back.

That is the part no one prepares you for. Situations like this rarely fall apart all at once. They change in quiet steps that are easy to rationalize when you are trying to trust the system you have put in place.

Whether you are next door or 500 miles away, those quiet shifts can be easy to miss when you believe things are being handled well.

By the time we understood what was happening, the damage had already been done.

For years, I thought about all the things we did not know to watch for. The questions we never thought to ask. The boundaries we assumed no one would cross.

That experience changed the way I think about caregiving. It is not just about arranging help. It is about creating a structure that protects everyone involved. Because trust without structure can leave vulnerable people unprotected, and safety requires more than simply trusting the person who walks through the door.

I learned that exploitation rarely begins with obvious abuse. It often begins with trust, dependence, and gradual influence that families may not recognize until it is too late.

That is why I turned our experience into the book, For All She’s Worth. Not only to tell the story of what happened to my aunt, but to help other families recognize what can go wrong even when they are doing their best.

Families should not have to learn these lessons through confusion, manipulation, regret, or hindsight. There should be a structured way to bring care into a home while still protecting safety, boundaries, oversight, and peace of mind.

That is also why I created SAFE Care at Home, a step-by-step system designed to help families interview and hire caregivers, establish clear boundaries, maintain oversight, and protect their aging parents and loved ones before, during, and after senior home care begins.

It includes family caregiver tools, caregiver forms, checklists, and caregiver agreements designed to reduce risks that can quietly develop in a vulnerable home.

My hope is that other families recognize the early warning signs sooner than we did, before it is too late.

Get SAFE Care at Home

He had reportedly been kicked out of numerous facilities for his behavior, and the staff was afraid to enter his room alone.

I was working as a contract occupational therapist at a long-term care facility when one of my first patients, Mr. Peterson, was added to my schedule.

Before I ever met him, my boss, a physical therapist, warned me.

“This patient is mean. He lies. You’ll need someone in the room with you during treatment, so I’ll stay while you do your evaluation.”

No one had ever been able to connect with this patient.

When we entered his room, the blinds were shut, the lights were off, and the television was silent. The room was almost completely dark.

The PT walked in ahead of me, flipped on the overhead lights, and loudly announced, “Mr. Peterson, another therapist is here to evaluate you, and I’m staying to make sure you behave.”

Honestly, that would have startled anyone awake and put them in a bad mood.

Instantly, Mr. Peterson snapped, “Turn those damn lights off! I was sleeping. What do you want?”

He was understandably irritated.

Then the two of them started arguing about something that had happened the day before.

“You’re a liar,” Mr. Peterson shouted. “Get out of here.”

The PT fired back defensively. “I told you I came in earlier and tried to do exercises with you, but you refused. You just don’t remember. You can check my notes.”

“No, you didn’t. You’re lying!”

I could see Mr. Peterson getting angrier by the second, and I knew I needed him calm if I was going to do my job.

I’ve always thought of patients like this as a welcomed challenge. I know I can break through a tough exterior.

I told the PT I would be fine completing the evaluation on my own and asked him to leave. He resisted, insisting it wasn’t safe for me to be alone with the patient. But I assured him I could handle it and needed to speak with Mr. Peterson privately.

Finally, he agreed, though he insisted I leave the door open before he walked out.

As soon as he left, I shut the door, turned the lights back off, and pulled a chair beside the bed.

In a calm voice, I introduced myself and explained that I only needed to ask him a few questions. Then I simply let him vent about the therapist.

I reassured him that I wasn’t there to force him to do anything he didn’t want to do. I told him today was only about getting to know him.

Mr. Peterson was only 65 years old. In his early twenties, he broke his neck in a diving accident that left him paralyzed from the neck down. Since then, he has lived his life in a power wheelchair.

That was my connection.

I told him my husband also had a C5-C6 spinal cord injury when he was just eighteen. He, too, has lived over forty years in a wheelchair.

Immediately, his breathing slowed as he settled into the bed. He listened quietly as I shared pieces of my life. I would ask him questions about his experiences, and in return, I shared parts of mine. He knew I understood.

I saw Mr. Peterson every day for the next two weeks, and little by little, I got to know the man behind the anger.

After his spinal cord injury, he went to college, earned a master’s degree in education, and spent more than 30 years teaching math to high school students. He loved teaching, he loved his students, and they loved him. When he retired, the school held a large retirement celebration so that current and former students could come say goodbye.

He never married, but continued living with his mother, who became his primary caregiver, helping him with the activities he could not manage independently.

He had no children. No siblings. No other close family.

Then everything changed.

His mother suddenly became ill and passed away. He had no backup plan for care.

Shortly afterward, he developed a severe urinary tract infection and was hospitalized. While he was still in the hospital, his house caught fire, and he lost everything.

The longer he remained hospitalized and confined to a bed, the more independence he lost. Because he had no home, he was shuffled from one care facility to another.

The man was understandably bitter.

But he liked me.

Then, one day, the facility director called me into his office.

Leaning back in his chair, he asked, “How did you do it? You are the ONLY person in this building who has managed to calm him down. He likes you. What did you do?”

My answer was simple.

“I treat him with the respect he deserves.”

Respect and kindness are free.

It is important to form a connection with another person rather than relying solely on what others tell you about them. Take the time to learn who they are for yourself. Meet them where they are in their journey. Don’t rush to give advice or fix their problems.

Listen.

Let them vent.

Share your own humanity and vulnerabilities when appropriate.

Connection begins with something very simple: respect.

What I learned from that patient stayed with me long after the assignment ended. The turning point for him was not stricter limits or more authority. It was respect. Once he felt seen as a person rather than managed as a problem, everything shifted. Cooperation replaced resistance. Care became possible again.

This matters just as much when families bring someone into the home to provide care.

Hiring a caregiver is often approached like a control problem. Families try to reduce risk by tightening rules, adding oversight, and correcting behavior from the start. While structure is important, control alone does not create safety. In fact, it can sometimes create the same resistance I saw in that hospital room, disengagement, defensiveness, or quiet noncompliance that is harder to detect.

Real caregiving success depends on something deeper than supervision. It depends on the relationship. A caregiver who is treated with respect is more likely to stay engaged, communicate honestly, and respond calmly under stress. And a care recipient who feels a sense of dignity rather than pressure is more likely to accept help, even when they are fearful, confused, or resistant.

The goal is not to control every moment of care. The goal is to build a structure in which trust can function within the home. Respect does not remove boundaries; it makes them workable.

That is where safety actually begins.

On Easter Sunday, I received a text from my aunt’s caregiver that immediately frightened me.

“She is totally gone. She keeps mumbling; her eyes are rolling back, and she can’t even hold her water glass. I can’t get her to eat anything, and she can’t swallow her pills.”

My aunt had dementia, lived alone, 500 miles away from us, and was dependent on hired help for her daily needs. According to the caregiver, she was barely responsive.

I urged the caregiver to contact hospice, only to learn that after promising to arrange the care, she apparently never had.

Nothing made sense.

One moment, the caregiver described my aunt as critically ill and nearly unconscious. Then, just an hour later, she sent a photo of her family smiling outside a restaurant. My aunt, in her wheelchair with her head tilted back, was at the center of the picture. Beneath it was a cheerful update saying they had enjoyed a nice Easter lunch.

I remember staring at that photo in disbelief. She had just told me that my aunt could barely swallow. Now they were taking her out to lunch?

What was happening?

The hours of silence that followed felt worse than the frantic messages before it.

I called my sister, and together we tried to make sense of what was unfolding from hundreds of miles away. The caregiver’s stories became more disturbing, and we had no way to verify any of it.

Then came another message.

“She won’t wake up.”

I immediately told them to call 911.

But instead of reacting with urgency, the caregiver’s husband hesitated, worried more about what the neighbors might think if an ambulance showed up at the house.

I snapped back, “You will have far bigger problems if she dies under your care and you did nothing.”

As paramedics finally arrived, the caregiver updated me and my sister through group texts. My aunt was lethargic and struggling to breathe. Then came the message that made my stomach drop.

“They are giving her Narcan.”

Narcan. The medication used for overdoses.

At the hospital, police immediately separated the caregiver and her husband from our aunt and instructed them not to leave. Toxicology tests were ordered. Officers questioned everyone involved.

Soon afterward, the caregiver began texting about “assault and battery accusations,” insisting she had done nothing wrong.

Then came the final message of the night.

“We went to the cafeteria to get something to eat and just got back. Her room is empty. Someone is cleaning it and said the patient is gone. No one will tell me where she is.”

My stomach lurched.

Gone?

My hands trembled as I stared at my phone, my mind racing through every possibility. This was not confusion or miscommunication. Something was terribly wrong.

Instead of replying to the group text, I called my sister. I could hear the panic in her breathing before she even spoke.

“GONE? What the hell does that mean?”

“I don’t know,” I whispered. “What do we do now?”

Looking back now, the warning signs had been building for a long time. Easter Sunday was simply the moment everything finally collided.

What happened with our caregiver changed the way I think about safety, trust, and caregiving forever. I realized how unprepared we were before bringing someone into our aunt’s home, and over the past few months, I’ve been creating something to help guide families through the process of hiring and managing caregivers more safely, something I desperately wish our family had before we ever hired help.

What happened to our aunt, and everything our family experienced, is told in my book, For All She’s Worth available on Amazon.

My mom was just fourteen years old in 1951 when she met my dad at a roller rink in Kansas City. He was eighteen and about to enter the Army. They married on April 8, 1956, had four daughters, and remained together until her death on November 19, 2019. After sixty-eight years together, he could not imagine life without her.

After Dad retired in 1992, they moved out to the country and enjoyed a happy, carefree life on their farm. But in 2007, everything began to change. Mom started having seizures and was eventually diagnosed with Juvenile Epilepsy, along with Rheumatoid Arthritis, Osteoarthritis, and high blood pressure. She was placed on numerous medications.

Then her personality began to change.

She became easily angered, complained constantly, and lost the social filter she had always had. Not long after, she tore her Achilles tendon, which required surgery and left her dependent on a walker.

Eventually, it became too difficult for Dad to manage the farm while also caring for her, so in 2008, they sold it and moved back to the city to be closer to my three sisters and me.

As her condition worsened, she was placed in a memory care facility just two blocks from the senior community where Dad lived. Faithfully, he drove those two blocks twice a day, six days a week, and once on Sundays for two years, just to sit by her side and hold her hand for a few hours.

Her memory and personality continued to decline, and she was eventually diagnosed with Lewy Body Dementia.

My sweet, devoted father struggled deeply with the painful changes in the woman he had loved for so many years until one day, someone handed him a poem that changed his perspective.

He printed it out, taped it to his front door, and read it every single day before visiting her.

Of course, the poem did not change her diagnosis or restore the woman he once knew. But somehow, it helped carry him through the grief and frustration of losing his wife while she was still alive.

My father is now ninety-two years old. He used to say he was ready to go “be with Mom.” Unfortunately, he no longer remembers her name or recognizes her face in photographs. But now, when I read this poem, I understand the peace it gave him during those years of losing her little by little.

I share this poem with anyone walking through the painful loss of a loved one who is still living. I hope it brings you comfort and peace, too.

Not long ago, I shared this poem beneath another writer’s Substack post about dementia and caregiving that made me think of my father.

The response from readers was incredibly touching, and one reader researched the poem’s author and suggested that I share the story of why this poem mattered so deeply to our family. Thank you, Victoria!

So today, I wanted to share that story with you before sharing the poem itself.

A Request from My Love

By Owen Darnell

Do not ask me to remember,

Don’t try to make me understand.

Let me rest and know you’re with me,

Kiss my cheek and hold my hand.

I’m confused beyond your concept,

I’m sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry.

I can’t help the way I’m acting,

I can’t be different, though I try.

Just remember that I need you,

That the best of me is gone.

Please don’t fail to stand beside me,

Love me ‘til my life is gone.

A patient’s husband told me recently that his sister died a month ago, and he has no intention of attending her funeral.

At first, I assumed he was too busy attending to his wife, or that the grief was simply too painful. But as he continued talking, I realized that was not the reason at all.

His sister, Bernice, had dementia. And according to him, what happened during the final years of her life destroyed their family.

His wife has late-stage dementia herself, and our conversation had started with a simple question about whether he had his own affairs in order before a crisis occurred. He told me that he did. His father had always kept everything organized, and he had learned from that example.

Then he told me about his sister.

Bernice lived in Indiana and had dementia. Years earlier, her husband had also developed dementia and was eventually moved into a memory care facility. As Bernice’s condition worsened, one of her three daughters, Lisa, stepped in to help and became her caregiver.

Although she did not live with her mother, Lisa drove to her mom’s house twice every day. She helped her out of bed in the morning, prepared meals, managed medications, cleaned the house, did the laundry, assisted with bathing, and ensured her mother was safe. The work was demanding and never seemed to end, but she kept showing up day after day because her mother needed her.

According to Bernice’s brother, Lisa’s two sisters lived in Florida and rarely visited either of their parents. While Lisa carried the responsibility of caregiving, the other two sisters remained largely absent from their mother’s daily life.

Then one morning, everything changed.

The night before had been completely ordinary. Lisa had prepared her mother’s dinner, helped her settle into bed, and then returned home for the evening. When she arrived the next morning, she expected another routine day of caregiving. Instead, her mother was gone.

There were no cameras in the home, so there was no way to know what had happened during the night. Lisa panicked. She contacted the police and began searching for answers. Eventually, she learned what had happened.

According to Bernice’s brother, the two sisters from Florida traveled to Indiana without telling Lisa. During the night, they entered their mother’s home, packed some of her belongings, and took her back to Florida, where they placed Bernice in a memory care facility.

The daughter who had spent years caring for her mother every day had no warning, no discussion, and no opportunity to participate in the decision. One day, she was her mother’s only caregiver. The next day, her mother was gone.

Bernice remained in the Florida facility for the next two years. According to her brother, the daughters who moved her to Florida rarely visited. Meanwhile, Lisa remained in Indiana, separated from the mother she had cared for so faithfully.

Last month, Bernice died.

What happened afterward is what angers her brother today. According to him, the final arrangements left Lisa with nothing. The daughter, who had devoted years of her life to caring for her mother, was excluded, while the sisters, who had done none of the caregiving, inherited everything, including the family home.

As he told me the story, the frustration in his voice was unmistakable. He explained that he would not be attending his sister’s funeral because his anger runs so deep that he does not trust how he might react if he is there. He said he cannot bring himself to face his nieces, whom he believes acted with deceit, betrayal, and greed toward both their sister and mother.

Unfortunately, his wife, my patient, was hospitalized, and I never got to hear what happened at the funeral. His story stuck with me, and I kept thinking about Lisa.

Families often assume that love, sacrifice, and doing the right thing will naturally lead to fair outcomes. Most people believe that if they dedicate themselves to caring for a parent, everything will work out in the end. Unfortunately, life does not always follow that script.

Dementia changes more than memory. It changes family dynamics. It can expose old conflicts, create new ones, and lead to decisions that permanently alter relationships. When legal documents, financial plans, and end-of-life wishes have not been clearly established, organized, and made accessible to key family members before cognitive decline begins, families can find themselves facing situations they never imagined. Clear planning ahead of time can help prevent disagreements from turning into lasting family divisions.

I do not know every detail of what happened in this family. I only know the story as it was told to me. But I cannot stop thinking about the image of a daughter arriving at her mother’s house one morning, expecting to begin another day of caregiving, only to discover that her mother had disappeared.

For years, she showed up. For years, she carried the burden. For years, she put her mother’s needs ahead of her own.

Yet when her mother’s life came to an end, the daughter who had given the most was left with nothing.

Stories like this are why I encourage families to have difficult conversations before a crisis occurs. The best time to prepare is long before a diagnosis, long before cognitive decline, and long before someone loses the ability to make their own decisions. Because once dementia enters the picture, the opportunity to protect a person’s wishes can disappear much faster than anyone expects.

“Is Brandy home? I need her to take me to the doctor. I don’t feel well.”

The voice on the phone belonged to Grannie, my ex-husband’s mother. She lived less than ten minutes from our house and, despite her age, was still remarkably independent. She wasn’t someone who complained or asked for help very often, so when she called that morning saying she didn’t feel well, I knew something had unsettled her. At the time, my daughter Brandy was nineteen years old and living at home. She had always been especially close to her grandmother, so I walked down the hall and gently woke her up.

“Grannie called. She needs you to take her to the doctor.”

The moment Brandy heard those words, tears filled her eyes. “What if something is wrong with her?” she asked. Looking back, I can still hear the fear in her voice. At nineteen, the thought of losing another grandparent felt unimaginable. I tried to reassure her the best I could. “Then you’ll be grateful you were there to help her,” I said.

The doctor’s appointment turned out to be uneventful. After examining Grannie and running a few tests, the doctor found nothing concerning and sent her home. Brandy was visibly relieved. We all were. It seemed like one of those situations that had frightened everyone for no reason, and by that afternoon, life had settled back into its normal routine.

Then the phone rang again.

This time, Grannie called her son, Brian, Brandy’s father. Her voice carried more urgency than it had earlier in the day. “I don’t feel well. I need you to take me to the hospital.”

As they sat in the emergency room waiting for doctors to complete a series of tests, Grannie began talking about something neither of her sons expected to hear. She started telling them where all of her important paperwork was located inside her house. It was information she clearly felt was important enough to share while she still could.

But like many families faced with the possibility of losing someone they love, her sons couldn’t bring themselves to hear what she was really saying. Their father had passed away seven years earlier, and the thought of losing their mother was too painful to consider. They brushed aside her instructions with the same words so many families have spoken before.

“Oh, Mother, you’re going to be fine.”

“Don’t talk about that right now.”

“Everything is going to be okay.”

They weren’t being careless. They were being hopeful. None of them believed they were having a final conversation.

Doctors soon discovered that Grannie’s heart was extremely weak. In an effort to give it a chance to recover, they placed her in a medically induced coma while they continued evaluating her condition. Her family waited anxiously, believing there would be another conversation when she woke up. There wasn’t. Three days later, Grannie passed away without ever regaining consciousness.

The grief was overwhelming. The woman who had raised her children, buried her husband, and spent decades caring for her family was suddenly gone. Yet alongside the sadness came something else: panic.

Her two sons found themselves standing inside the old house where they had grown up. Their parents had lived there for more than sixty years, and like many homes occupied for decades, it was filled with a lifetime of memories and belongings. Closets were packed with boxes. Drawers were filled with papers. Important documents were tucked away in places that made perfect sense to Grannie but were a mystery to everyone else.

As they searched room after room, the questions started. “What exactly did she say?” “Which drawer was it?” “What kind of box did she mention?” “Why didn’t we pay closer attention?”

The painful truth was that she had tried to tell them. She had given them the information they would soon need. She had done exactly what people are advised to do. The problem wasn’t that she failed to prepare. The problem was that nobody believed the information would be needed so soon.

As a home health Occupational Therapist, I have seen this story repeat itself countless times. Sometimes people never create a will or organize their important documents. But just as often, they do everything right. They carefully prepare their affairs, gather their paperwork, and make thoughtful plans for the people they will leave behind. Then one critical piece is missing. No one else knows where anything is located, or the information is shared once during a conversation that everyone assumes can be revisited later.

The result is always the same. Families who are already grieving find themselves tearing through drawers, closets, filing cabinets, and storage boxes, desperately searching for the documents their loved one worked so hard to organize. What should have been a gift becomes a scavenger hunt.

Whenever I think about Grannie, I don’t think about the paperwork that was eventually found. I think about that hospital room. I think about a mother trying to make sure her family will be okay. I think about two sons who loved her so much that they couldn’t imagine losing her. And I think about how quickly life can change.

Most of us believe there will be another conversation, another visit, another chance to ask the questions we forgot to ask. Sometimes there isn’t. That is why having your affairs in order is only half the battle. The other half is making sure the people you love know where to find them when you’re gone.

To read about each of Grannie’s sons: He Survived the Crash. His Family Didn't Survive the Aftermath and What Would Happen if Someone You Love Passed Away Tomorrow?

When Glenda’s father died last October, her mother’s health began to decline almost immediately. The falls started first, followed by increasing memory problems. Nothing was catastrophic at first, but it became clear that she could no longer safely live alone.

At the time, Glenda was living near her parents in Alabama with her two teenage sons. She was a single working mother, and although life was not easy, it was stable. She had a job, a home, and independence. Her sister lived in Texas and worked full-time as a nurse, so moving closer to her seemed like the logical solution. Glenda believed that if she relocated near her family, they could share the responsibility of caring for their mother.

So, she made a decision that changed every part of her life. She quit her job, packed up her mother’s belongings, sold her home, and moved 500 miles to Texas with her mother and her sons.

Once they arrived, reality looked very different from what she had imagined.

The only place she could afford was a small two-bedroom apartment. Her mother took one bedroom, and her sons shared the other. Glenda slept on the couch. She has not returned to work yet, and the household is now surviving largely on her mother’s Social Security check.

When I visit their apartment for occupational therapy appointments, the curtains are usually closed, and the room is dark. Her mother spends most of her time alone in the bedroom watching television. Glenda often sits quietly beside me and slowly opens up about how overwhelmed she feels. She has no income, no church family yet, and no real breaks from caregiving. She feels stuck and increasingly resentful toward her sister, who lives nearby but rarely steps in because she works full-time and assumes Glenda has everything under control.

What struck me most was that Glenda never truly asked her sister for help.

She assumed that once she sacrificed everything and moved closer to family, support would naturally follow. She thought people would recognize how overwhelmed she was without her having to say it. She expected someone to offer weekends, bring meals, help financially, or create some kind of shared caregiving plan.

But none of that happened.

Instead, she slowly disappeared into survival mode.

Caregiving has a way of consuming people when they stop seeing themselves as a person and begin seeing themselves only as “the caregiver.” Glenda had always been the provider for her children. She had worked hard to support them, and now she felt like she was failing everyone. Especially herself.

But there is a hard truth many caregivers never realize until they are completely burned out: people cannot respond to needs that are never clearly spoken.

Sometimes family members truly are selfish or uninvolved. But other times, they simply do not understand how serious the situation has become unless someone directly says, “I cannot do this alone,” or “I need you to take over this weekend,” or “I need help before I fall apart.”

Many caregivers wait silently, hoping someone will notice their exhaustion. Meanwhile, resentment quietly grows in the silence.

Glenda may not be able to return to her previous career right away, but that does not mean she has no options. She could find a local job close to home. Her teenage sons are old enough to stay with their grandmother for short periods while she works. She could tell her sister plainly, “I need a break,” instead of hoping she would somehow figure it out on her own.

Caregiving is hard even when it is planned. When it arrives suddenly, it can completely dismantle a person’s life. But caregiving becomes even more dangerous when one person quietly carries the entire burden while waiting for others to instinctively step in.

Asking for help is not a weakness. For caregivers, it is often the difference between surviving and completely losing yourself.

We prepare for what happens to people during illness and death. Almost no one prepares for what happens to the pets left behind.

When Brian suddenly went into the hospital, unable to breathe, doctors told him he needed open-heart surgery. Left behind at home were his two elderly dogs, sisters, Nelly and Blacky, the dogs our children had grown up with. They had always been outdoor dogs, living their quiet life together in the backyard they had known for years.

Not knowing how long their father would be hospitalized, our kids took turns going to the house to feed, water, and walk the dogs.

During one visit, our daughter, Brandy, a vet tech, immediately realized something was terribly wrong with Nelly. She was gravely ill and suffering. The most compassionate decision was to have her euthanized. That left Blacky alone.

Just one week after losing Nelly, a tornado tore through Brian’s neighborhood. Blacky was home by herself, her master gone, her lifelong companion gone, and now a violent storm crashing around her. She was nearly deaf and blind. She was confused and showing signs of dementia. She could not understand why everyone she loved had disappeared.

After the tornado, Brandy took Blacky to live with her and her cats. But Blacky had never lived indoors before, and the transition was miserable for her. Surrounded by cats and different routines, the only thing familiar was Brandy, so she followed her constantly. According to the video cameras, Blacky began urinating throughout the house, and barked almost nonstop while Brandy was at work.

Blacky was grieving, confused, and no longer able to adapt to a completely different world.

As Brian’s condition continued to decline, Blacky was suffering too. A few weeks after their father passed away, our kids made the painful decision to let Blacky go peacefully so she could join Nelly and their father.

When people prepare for illness, hospitalization, or death, they usually think about finances, medical decisions, and property. But almost no one talks about the living things left behind quietly waiting at home.

Pets do not understand hospitals, funerals, or why the person they waited for never comes back through the door. They only know absence, disruption, fear, and loss.

Blacky lost her lifelong companion, survived a tornado alone, was removed from the only home she had ever known, and spent her final weeks confused and grieving in a world that no longer made sense to her. None of it was anyone’s fault. It was simply a reality no one had planned for.

We make emergency plans for children. We create advance directives for ourselves. But who speaks for the pets who depend entirely on us?

If something happened to you tomorrow…..

• Who should care for your pets?

• Would they know their routines?

• Will they adjust to living in a new environment?

• What quality of life would you want for them?

• When would it be kinder to let them go?

Sometimes preparedness is not only about protecting people. Sometimes it is about protecting the vulnerable hearts waiting quietly at our feet.

You can read Brian’s story here on Substack: “What Would Happen if Someone You Love Passed Away Tomorrow?”

I knew this patient wasn’t going to get better within the first ten minutes of walking into the home, and it had nothing to do with his stroke.

He was a 70-year-old man who had suffered a significant stroke affecting his left side. His speech was impaired to the point that I could barely understand him. He wasn’t walking, he wasn’t using his left hand, and he relied on a wheelchair for mobility.

His daughter had moved him into her home, along with her son and his family, so they could care for him while she continued working full-time from her home office. On paper, it sounded like a strong support system. Multiple generations under one roof, more hands available to help. In reality, it was something else entirely.

The home itself was large, but cluttered. Furniture and belongings filled the space, creating narrow pathways that made it difficult to navigate safely in a wheelchair. From the beginning, the environment worked against him.

On my first visit, his grandson and the grandson’s girlfriend were sitting on the couch playing video games while their three-year-old ran freely through the house. The daughter was attentive at first and explained that she needed to continue working during the day. That’s not uncommon, and it’s something I’m used to working around.

I told her I could teach simple activities her father could do between therapy sessions, things that would help him regain strength and function without requiring constant supervision. She was receptive and willing, and it was clear she wanted to do the right thing.

But willingness and follow-through are not the same thing.

During my sessions, I worked with him on using his affected arm through simple, repetitive tasks to improve coordination and engagement. He struggled to focus and had difficulty participating, which can happen after a stroke, but there was still potential there.

What mattered most was what happened between visits.

He had one strong arm and one functional leg, enough to propel himself in a wheelchair and begin rebuilding some independence. But every time I returned, both footrests were back on the chair, and he was being pushed everywhere. I explained why that mattered, that movement is part of recovery, and that doing less leads to losing more. Each time, I was told the same thing: that he wanted to be pushed.

And each time, nothing changed.

I provided training on safe transfers using a walker and gait belt, showing how he could participate, bear weight, and gradually rebuild balance and strength. The girlfriend was attentive and followed directions well during the session. She did exactly what I asked.

But on the next visit, the walker and gait belt were nowhere to be found. Instead, he was being pulled up by his arms and guided unsteadily to the bed, then lowered down without control. It wasn’t because anyone intended to cause harm. It was because no one followed through. They were too busy to take the time to do it therapeutically.

There were also moments that were harder to ignore.

While I was working with him one day, he had a cigarette lighter in his hand. The three-year-old tried to take it and began hitting him when he wouldn’t let go. I redirected the child and told him to stop, but no one else intervened. His father remained on the couch, focused on his game, and his grandmother stayed at her desk. The patient became visibly frustrated, unable to communicate or defend himself.

Eventually, I had to step in and remove the child from the situation, sending him back to his father. That is not something a therapist should have to do, but it was necessary in that moment.

On another visit, the same child kicked me in the back of my leg. I reacted, “Ouch! Don’t kick me!” and the only response from the next room was his name being called out. There was no correction, no follow-up, and no change in behavior.

Throughout all of this, the daughter, who was the primary decision-maker, remained largely absent during therapy sessions. She would let me into the home and then return to her desk. I asked her to stay for training, but she would eventually leave again.

Without consistency, involvement, and follow-through, progress doesn’t just slow down; it stops.

Eventually, I had to discharge the patient for non-compliance. Not because therapy doesn’t work, but because therapy cannot compete with an environment that works against it.

This is the part most families don’t realize. Caregiving doesn’t fall apart all at once. It breaks down quietly, in small decisions that seem harmless in the moment. It looks like putting the footrests back on because it’s easier, skipping exercises because there isn’t enough time, assuming someone else will handle it, or being physically present but not truly engaged.

It doesn’t look like neglect. It looks like being overwhelmed. It looks like doing your best. It looks like a house full of people, and still, no one is fully responsible.

When a parent moves into your home after a major medical event, everything changes. Roles shift, routines are disrupted, and expectations are often unclear. When multiple adults are involved, responsibility can become diluted instead of shared.

Recovery depends on consistency. Not perfection, but consistency.

Progress doesn’t happen during the one hour a therapist is in the home. It happens in the other twenty-three hours of the day. When no one is reinforcing what’s being taught, when no one is staying engaged long enough to follow through, that is where progress begins to slip away.

No family plans for this, and most do not recognize it as it happens. But I have seen it enough to know that good intentions are not enough to create good care. Without structure, involvement, and follow-through, even the best therapy will not make a meaningful difference.

Jim and his wife have been married for over 60 years.

Two years ago, Jim experienced a fall that resulted in neurological damage, which has continued to decline. He is now bedbound and has difficulty using his hands, but his memory and decision-making remain intact. His wife is still physically able to take care of herself, but she has dementia and is no longer capable of caring for Jim’s needs.

Because Jim cannot stand or even sit up, he requires a mechanical lift to transfer from his bed to his wheelchair. He can feed himself, but is otherwise dependent for all self-care activities.

As a veteran, Jim qualifies for caregiver services, which removes some of the financial burden. He had already taken the necessary steps to organize his finances and secure his home. The final piece was finding a caregiver who met his expectations.

Jim was very clear about what he needed. The caregiver’s responsibilities included assisting him with his morning routine, changing clothes, managing his catheter bag, helping with bathing, managing medications, preparing breakfast, cleaning the house, doing laundry, feeding the dog, and driving both Jim and his wife to appointments in their accessible van.

Their son was present to orient new caregivers to the home and review expectations.

The first caregiver arrived two hours late and was dismissed immediately.

The second arrived on time, but when Jim’s son demonstrated how to use the mechanical lift, she stood at the doorway without asking questions or attempting to learn the process. She was dismissed that same day.

The third caregiver stated she did not know how to cook, despite being told that preparing breakfast was part of the job. She did not return.

One caregiver took repeated smoke breaks outside and came back smelling of cigarettes, and took frequent breaks to play games on her phone. She did not last long.

Another had worked for a few days when Jim asked her to pick up his prescriptions, buy some medical gloves at the drugstore, and fill up his van with gas, all using his credit card. He later discovered she had charged over $100 at Walgreens and used the credit card to fill her own gas tank. Her employment ended immediately.

One caregiver consistently checked in on time per the agency’s GPS tracking system, but a neighbor noticed she sat in her car for up to an hour before entering the home. This pattern was confirmed, and she was dismissed as well.

In total, Jim went through ten caregivers before finding two who met his standards. Both have now been with him for over two years. His primary caregiver is a young man attending nursing school, and the secondary caregiver is a young woman with teenage kids. In my 15 years working in home health, I can say without hesitation that these two caregivers are among the best I have encountered.

What stands out in this situation is not just that Jim found good caregivers, but how he avoided becoming vulnerable to the wrong ones. Many of the behaviors he encountered are often dismissed as minor issues, personality differences, or something that will improve with time. In reality, these early behaviors can be indicators of larger problems.

Grooming in a caregiving situation rarely starts with something obvious, such as theft or neglect. It often begins with small things, such as avoiding tasks, putting in minimal effort, or slowly gaining more access without fully earning trust. When these behaviors are overlooked, they can grow into much bigger problems over time.

Jim did not ignore those early signs. He paid attention to what people did, not just what they said, and he made decisions quickly. He did not assume that someone would improve or that a concern was too small to matter.

Families often feel pressure to give second chances or to accept less than what they are comfortable with, especially when finding help is difficult. However, allowing the wrong person to remain in the home, even briefly, can open the door to much bigger risks.

Taking the time to find the right caregiver and being willing to act when something does not feel right is not only reasonable, it is necessary.

In the end, the right caregiver is not the one who simply shows up, but the one who consistently proves they can be trusted with the required level of responsibility.

Rob’s independence ended in an instant. What followed was a life built entirely on trusting other people to show up. He would depend on them for the most intimate parts of daily life, with no real way of knowing who was reliable or trustworthy.

In August of 1982, just months after graduating high school, Rob went with friends to a local swimming hole in Wisconsin. One dive changed everything. He struck his head on the bottom and sustained a complete C5–C6 spinal cord injury. In an instant, his life shifted from independence to permanent dependence on others for his most basic needs.

The injury left him paralyzed below the neck, with no movement or sensation in his trunk or legs and limited function in his arms and hands. He would rely on a power wheelchair and require assistance with most daily self-care activities.

After seven months in hospitals and rehab facilities, Rob returned home, but not for long. He moved two hours away to attend college as he had planned. Independence, however, came at a cost most people never have to consider. From that point forward, Rob would need a caregiver not temporarily, but for the rest of his life. That is where his caregiver story begins.

After battling Wisconsin winters in a wheelchair and relying on an array of fellow students as caregivers, Rob moved west to attend Arizona State University in 1986.

While searching for caregivers, he met Tony, who ran a small caregiving service employing college students. With limited options, Rob hired him immediately. There was no real vetting process, just whoever was available.

Caregivers rotated in and out frequently, and Rob was constantly training new people. No-shows were common, and some days no one came at all. There were times Rob had to sleep in his wheelchair or remain in bed for hours because no one showed up to help him transfer. At that stage, he did not yet have the confidence to demand reliability. He was simply grateful for any help he received.

Rob used Tony’s services for over ten years, enduring inconsistency and unreliable care. Over time, he began to realize how one-sided the arrangement had become. Funded largely through Medicaid, Tony was underpaying caregivers and keeping most of the money. What once felt like a solution began to look more like exploitation. Rob wanted out, but after a decade, he did not know how to end it. To his relief, Tony announced his retirement, bringing that chapter to a close.

Rob thought he had it figured out. He had experience, a system for training caregivers, and a better understanding of what to expect. But the next chapter would show him just how fragile that stability really was.

Rob was now living in an apartment, yet again, with caregivers who frequently failed to show up. Friends often filled the gaps, even helping with deeply personal care when needed. One night, when no caregiver arrived, Bill, the maintenance man, was on the property. Rob asked him for help getting into bed.

Bill became a consistent presence and began helping regularly. Eventually, Rob hired him. Bill was not a trained caregiver, but a maintenance worker who needed some extra income, and Rob needed reliability. The arrangement worked. Bill became Rob’s primary caregiver, assisting with transfers, bowel care, and showers. For the first time in a long while, Rob did not have to rely on friends or worry about being left alone without help.

After finishing school, Rob found a new direction working in a spinal cord injury program, helping others adapt to life changes and pursue independence and employment.

He soon bought a house, and around the same time, Bill lost his maintenance job. Once again, their needs aligned. Bill moved in as a live-in caregiver, living rent-free while being paid a small salary through state services.

In the beginning, their relationship was both practical and social. They spent time together, went out, and shared a sense of normalcy. Over time, however, as Rob became more independent, Bill began doing less. What started as a helpful arrangement slowly shifted. Bill became more withdrawn, contributing less and less. Eventually, even basic responsibilities were neglected. Household tasks went undone, and the overall standard of care declined. The change was gradual, almost unnoticeable, until it became the new normal.

Rob recognized the shift, but addressing it felt more difficult than tolerating it. There was no formal agreement, no written expectations, and after so many years, the idea of starting over felt overwhelming.

Then Janice entered Rob’s life. She was his home health nurse, and they quickly formed a relationship. Ten months later, she moved into his home. As an outsider, she immediately saw what Rob had grown used to: Bill’s lack of caregiving. As Janice took on more of Rob’s care, it became clear just how much had been missing.

The three of them lived together during the COVID pandemic, and tension quickly escalated. Rob would come home expecting to relax, but instead found himself in the middle of an ongoing conflict. Bill and Janice argued when Rob was not present, and afterward, Bill would go to Rob with complaints, pulling him into the middle. After nearly two decades, Rob began to question whether he could still trust Bill.

They held meetings to discuss the situation, but the dynamic had already been established. Bill did not change. He felt threatened by Janice’s presence and became increasingly antagonistic toward her, though never toward Rob.

There was no physical abuse and no financial exploitation, but there was neglect, and it had been building for years. It happened so slowly that Rob had adapted without fully realizing how far things had declined, until one day he stopped and asked himself, “How the Hell did I end up here?”

It was clear things could not continue, and someone had to leave. The answer was obvious, but that did not make it easy. After 17 years, Rob told Bill it was time to move on and gave him three months to find another place to live.

Ending that relationship finally brought the peace Rob and Janice needed. They are now married and have built a life that feels stable, supportive, and safe.

Like many others in his position, Rob learned the hard way that having a caregiver is one thing; knowing who to trust and finding the confidence to speak up for himself are something else entirely.

Rob’s story is not unique. It highlights a reality many families and individuals face when care is needed quickly: decisions are made out of necessity rather than strategy. When options are limited, people hire whoever is available, often without vetting, clear expectations, or accountability. And when care is inconsistent or gradually declines, it rarely happens all at once. It happens slowly, over time, until what once would have been unacceptable becomes normal.

The real risk is not always obvious abuse or theft. Sometimes it is neglect, unreliability, or a caregiver doing just enough to get by. Without systems in place, clear expectations, oversight, and a willingness to speak up, it becomes easy to stay in a situation that no longer serves you.

Rob’s experience is a reminder that needing help should never mean giving up control, and that who you trust with care matters more than most people realize.