Isabel B as told to Liz Tenety

My mom, Noreen, was a teacher her whole life. She started teaching at 21, working with seventh graders during the integration of public schools. Later, she taught third grade, a grade she enjoyed much more. She always dreamed of being a college professor, but as a woman in her generation, her options were limited. She often said that if she had been born a little later, she might have become a lawyer or doctor. Teaching was what she could do, so she did it well. She prided herself on being one of the sharpest minds in the school.

She was strong-willed and fiercely independent, so when her health began to decline, it was hard on all of us.

My brother and I moved her out of her house in 2017 because it had become too much. It was too big, too expensive, and too isolating. She had mobility issues from knee replacements, and her teacher retirement wasn’t enough to keep her afloat. She resisted leaving, but we knew it was necessary. After a short stay with my brother in Virginia, she moved into assisted living in 2018.

She stayed on the assisted living side for a few years, but the pandemic made things harder. She became depressed, rarely leaving her room or interacting with others. I started noticing more signs that something wasn’t right, and by 2022, it was clear she needed more care.

Moving her into memory care was one of the hardest decisions I’ve ever made. She was furious at first—angry because she knew something was wrong but couldn’t fix it. Eventually, she forgot why she was mad, and that brought some peace.

Memory care was a strange world. I learned to work with the staff and get to know them, often bringing them chocolates or lunches. I wanted them to feel appreciated because they were the ones watching over my mom when I couldn’t be there. I also had to set boundaries for myself. The constant phone calls from my mom, sometimes 35 a day, were overwhelming. I eventually learned to ignore the ones that came late at night or when I knew she was safe. It was a hard boundary to set, but necessary for my sanity.

Her decline was heartbreaking. She didn’t always remember my children’s names, but she knew they were hers in some way. Sometimes she thought I was her mother, which was ironic since I’m nearly six feet tall, and my grandmother was barely five feet with bright red hair. But she never forgot me completely, and that was a gift I didn’t take for granted.

Her biggest fear had always been losing her mind. It was something she talked about often, even before the diagnosis. Watching her live through that nightmare was one of the most painful parts of caregiving.

I saw changes in her face, too—her features seemed to droop, something I later learned can happen with Alzheimer’s. It was hard to reconcile the woman I saw in front of me with the vibrant, determined person I had always known.

She passed away in early 2023, about two years after moving into memory care. Her death came suddenly after a fall and a short stay in the hospital. I wasn’t with her when she died, but I flew out the next morning. It was a blur, like so much of the last few years had been.

Caregiving is exhausting. Balancing her needs with my own children and a full-time job often felt impossible.

I saw a therapist to help me manage the stress, but the challenges didn’t go away. My mom didn’t like to be told what to do, even when it was for her own good. She wanted to sit in her depression sometimes, and there was no convincing her otherwise. Watching her struggle with emotions and memories she couldn’t control was incredibly difficult.

What I learned through all of this was to set boundaries and not feel guilty for them. I couldn’t be everything to everyone all the time. I had to trust the staff and let go of things I couldn’t control. It’s something I still carry with me in other parts of my life.

Looking back, I wish there had been more meaningful support for caregivers. There’s a lot of talk about helping families, but much of it feels like lip service.

Communities are understaffed, and caregivers are left to pick up the slack. I always felt my mom was well cared for, but I know that’s not the case for everyone. And for those of us balancing kids and parents, it’s an isolating experience. Most of my friends weren’t dealing with anything like this, so I often felt alone.

If I could offer advice to someone beginning this journey, it would be to get the paperwork in order early—power of attorney, access to accounts, everything. It’s hard to have those conversations, but they’re necessary.d about the things she would do someday, but Alzheimer’s stole that time from her. It’s a reminder I carry with me every day.

Even now, there are moments of her that make me smile. She was always a little ridiculous, like the time she took my brother and me on a Greyhound bus to Miami with a guitar because she was presenting at a conference. Or how she loved Bob Dylan and made it her mission to see him in concert after she retired. Those memories remind me of the adventurous spirit she had, even when life tried to hold her back.

I miss her, but I’m grateful for the time we had and the lessons she taught me—about resilience, boundaries, and the importance of living fully while we can. 

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This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.

Lance Ebenstein as told to Liz Tenety

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When I think back to who my wife was before early-onset Alzheimer's, I feel the details slipping away, no matter how hard I try to remember. She is still here, of course, but in so many ways, she is gone.

Before she was diagnosed in her mid-50s, she was the kindest soul you would ever meet—never saying a bad word about anyone, always carrying herself with quiet grace. She loved our home, our family, and the simple joys of gardening, baking, and making a house feel like a haven. She was my partner in every decision, my equal, my best friend. Now, I make every decision alone.

The first signs of trouble came at work. She had been a meticulous bookkeeper for years, but her employer noticed she was forgetting tasks, losing track of her responsibilities. One day, she came home in tears—HR had suggested she might have early-onset Alzheimer’s. I was floored. I had never even heard the term before. I thought, "That can’t be right." But when I looked back, the signs had been there.

The forgetfulness at home, the moments where she seemed lost in her own thoughts, the times I would speak, and she wouldn't seem to hear me. We went through a long and exhausting process of testing. At first, they thought it was anxiety. A year later, she lost her job. I requested her personnel file and was shocked to see how long her employer had been noticing issues, how many accommodations they had tried to make for her. She had been slipping away long before I realized.

We got the official diagnosis in 2018. Alzheimer's. By then, it was already clear something was wrong, but having a name for it didn’t make it easier. She was devastated. I would come home from work and find her crying. "I’m just feeling sorry for myself," she would say. But she rarely let it show. That was her way—she carried burdens quietly, even when they were unbearable.

The reality of caregiving crept in slowly. First, it was little things. She needed reminders, help with daily tasks. Then, she started getting lost while driving. One day, she went out and ended up 70 miles from home. That was the last time she drove. Later, she wandered out of the house barefoot in her pajamas on a cold morning. She wasn’t trying to leave—she just got confused. That’s when I put cameras in the house. That’s when I started sleeping lighter, worrying more.

By 2022, I left my job to care for her full-time. It wasn’t a hard decision—it just felt like the right thing to do. We had talked about retirement, about winters in Florida, about a life we would build together. Now, every day is about making sure she is comfortable, safe, and cared for. I had to adjust my idea of what our life would be.

People talk about the vows you make when you get married—for better or worse, in sickness and in health—but they don’t tell you what it really means to live those vows. I love her as much as I ever did, but our marriage is different now. I miss the conversations. I miss the small moments where we would decide things together. I miss her voice, her laughter, her companionship. Now, my role is caregiver first, husband second.

I have learned that if I don’t take care of myself, I can’t take care of her. It took me a long time to let go of the guilt of stepping away. Now, I have help—caregivers who come a few times a week so I can go for a walk, kayak, just breathe. It’s not selfish. It’s survival. I’ve joined online support groups, connected with other caregivers. It helps to know I’m not alone.

Alzheimer’s is a disease of loss. You lose them, piece by piece, until one day you realize they don’t know who you are. Every morning, I wake her up, and she looks at me with fear because she doesn’t recognize me. I have to win her trust anew each day. That is the hardest part. But even in the hardest moments, I hold on to what is left. She may not know me, but she still reaches for our grandchildren. She still hums along to the songs she used to love. There are moments of light in the darkness.

Loneliness is a different emotion than solitude. I have always enjoyed moments of solitude, but the loneliness of caring for someone with Alzheimer’s is deafening.

It’s in these quiet moments of each evening, alone again with my thoughts and grief that I wonder, why? Why her? Why this disease? Why another day of blank stares? Why does she keep hanging on? Barely able to walk a few steps, even with full support. Why? Not able to do anything for herself anymore-eating, drinking, bathing, toileting or even express the desire for anything such as food, a hug or a kiss. Why is it okay that we keep on going, keep on trying as the years approach 10 into this diminishing tunnel of light? Why?

Is it enough to hope for a brief smile, a tiny laugh or a momentary sparkle in her dimming eyes that just maybe, she still knows who I am? When she reaches out a hand to touch my arm or my face and say, “I Love You,” oh so rarely but feels like the first time with each word clearly spoken. Is it enough?

Each quiet morning as I listen to her sleep and wonder how long before we are to begin again the daily struggle of life with Alzheimer’s. The struggle of getting her out of bed after 13-15 hours of sleep. The struggle of getting her cleaned and dressed. The struggle of getting her to see the food/drink approach and open her mouth, remember to chew and swallow. Still hoping for a “moment” this new day and wondering Why? Is it enough? One more day ... one more day that I am worn out before it even begins.  

I decide, that yes, it will have to be enough. To again on this new day, accept that she is here, and she is not. She is present, and she is not. It is the ambiguity of this journey, “the long goodbye,” the unending grief that I will once again choose to be resilient, because I said, “I Do,” through sickness and health, till death do us part.

So, I honor my wife Pam and hope that tomorrow I can rise to the challenge of meeting her needs for another day. Hoping for that moment to carry me into another evening of wondering why, and is it enough?

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This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.

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Mai Nguyen-Le as told to Liz Tenety

My father was a man of few words but immense strength. A former captain in the navy, he made the difficult decision to leave Vietnam in 1975 so that I could have a better life. It was a painful choice—he had to leave behind his family and everything he knew. I was only four months old when we fled, first to Hawaii and then to California, where my father eventually settled in the Bay Area.

Despite the hardships of starting over, my father remained kind, generous, and hardworking. He came from a well-off family in Vietnam but arrived in America with nothing. He rebuilt his life from scratch, eventually working as a technician at Abbott Laboratories, where he stayed until retirement. Even then, he wasn’t one to sit idle—he helped me with deliveries at my flower shop in Sunnyvale, always using a paper map to plan his routes, even as digital maps became the norm.

My father’s devotion extended beyond his work. When I had my first child, my parents drove from Sunnyvale to San Jose every morning to help care for him. As my sister and I had more children, they continued to be there, watching over their five grandchildren until they were old enough for school.

The first signs of change

In 2013, we started noticing small but concerning changes. At first, we thought it was just aging—misplacing keys, forgetting small things—but then it became clear something more serious was happening. He started showing paranoia, convinced someone was trying to break into the house. He insisted we change the locks multiple times. He also believed his mail was being stolen, but recently, while cleaning out my parents' home, we found stacks of mail hidden in a kitchen cabinet, forgotten.

Another sign was his confusion over simple tasks. My mom would ask him to grab something from the kitchen, and by the time he got there, he had already forgotten what he was looking for. We took him to a neurologist, but he passed all the cognitive tests. They told us to monitor him, but as time went on, his forgetfulness worsened. Eventually, he stopped talking. He lost his ability to communicate, and later, his mobility declined, leaving him fully dependent on us for care.

The decision to keep him at home

As his condition worsened, we had to decide whether to place him in a care facility or keep him at home. For us, there was never really a question. In Vietnamese culture, caring for aging parents at home is a deeply held value. Elders are respected, and families take pride in looking after them, ensuring they remain surrounded by loved ones. My mother became his primary caregiver, and my sister and I helped whenever we could, coordinating shifts on weekends.

When COVID-19 hit in 2020, everything became even more uncertain. We had our caregivers take time off and took over full-time responsibilities ourselves. It was exhausting, but we knew that keeping him in a familiar place, with familiar faces, was the best thing for him. Even as his mobility declined, we adapted— getting a wheelchair and a hoyer lift, pureeing his food, and thickening his liquids to prevent choking. Every adjustment was made to keep him comfortable and safe.

The final years

As Alzheimer’s progressed, my father needed increasing levels of care. He lost his ability to swallow properly, requiring a suction device to prevent choking. He was in and out of the hospital for infections and other complications. Each hospital stay made it clear that he did better at home.

In unfamiliar environments, he became agitated and refused to eat, but with us, he remained calm and cooperative.

In time, this led to having a feeding tube put in. Eventually, we had to consider hospice care. At first, we thought it meant giving up, but we soon learned that hospice was about providing comfort in his final days. The hospice team taught us how to administer medication and care for him at home, ensuring he remained as comfortable as possible. He passed away in October 2022, just one day after his 83rd birthday.

Lessons in caregiving

Caring for my father taught me so much. If I could give advice to others on this journey, it would be:

Plan ahead. Establish power of attorney early. Without it, managing medical and financial decisions becomes an unnecessary struggle.

Find support. Organizations like the Alzheimer’s Association provide resources and guidance. You don’t have to go through this alone.

Advocate for your loved one. Medical professionals may not always understand the nuances of dementia care. Be vocal about your loved one's needs.

Take care of yourself. Caregiving is all-consuming. You can’t pour from an empty cup. Looking back, I realize self-care is just as important.

A changed perspective on life

Going through this with my father changed my entire perspective. I wake up every day grateful for my health and my ability to care for my family. Watching my father lose his ability to speak, move, and care for himself reminded me how precious those abilities are. Now, I prioritize exercise, mental stimulation, and self-care in ways I never did before.

I often wonder what my father would have said about everything we did for him. He was a man of few words, but I know he would have told us not to worry. Still, there were moments when he let his emotions show—moments when he cried out of frustration. Those were the hardest. And in those moments, I knew beyond a doubt that keeping him at home, surrounded by love, was the right choice.

My father may no longer be here, but his lessons live on—in the kindness and generosity he showed, in the sacrifices he made, and in the love that continues to bind our family together.

This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.

as told to Liz Tenety

My dad, or as we used to call him Papa, (but now Poppo) was always an imaginative, joyful, intelligent, athletic, and deeply engaged man. He was a professor at Cal State LA, specializing in Secondary Education and Instructional Technology. He had a deep passion for learning and sharing knowledge, creating educational videos that were widely used in nursing programs across the country. His curiosity knew no bounds—he spoke German, and kept it up after meeting my mom in Heidelberg, dabbled in Spanish and Latin, and was always eager to hear other people’s stories. He was the kind of dad who would get on the floor and play with Little People after work, who taught my brother chess in the hospital (my brother later became an international chess champion), who wrote a song for me when I was born. His love of learning and curiosity about the world shaped our family, and even now, despite the challenges of dementia, his inquisitive mind, warmth and humor shine through.

My parents' unwavering commitment and care played a crucial role in my brother’s life, also. Born with cystic fibrosis, my brother faced immense medical challenges, but he lived to the age of 25—far beyond what many expected. This was largely due to my parents' relentless dedication. They ensured he had access to the best medical care, advocated for him tirelessly, and created a loving, supportive environment that kept him going. Watching their devotion instilled in me a deep understanding of resilience, the importance of unwavering support, and the profound love that comes with caregiving. Both my sister and I stepped in a lot to help, too. It was a true family effort.

I am the youngest of three children. Losing my brother at 17 was a profound loss and also, so hard for my sister being the middle child, who was with him before I came along. My parents’ example of strength and unity, even through their divorce, reinforced the values of connection and family. My dad remained an active presence in our lives, always offering his boundless curiosity, warmth, and life advice. After he spent years living independently in California, moving between Los Angeles and San Diego, things started to change.

The first signs

The first real warning sign came when my dad, a man who prided himself on his independence, suddenly stopped returning calls one weekend. It was unusual. My sister and I grew increasingly worried and decided to check on him. That’s when we learned he had been arrested for a DUI. He told us, laughing, “Oh, sweetie, I was in the slammer.” His ability to make light of any situation was intact, but we knew something deeper was happening. He was getting lost, confused, and struggling with simple tasks. His intelligence made it easy for him to mask a lot of it. But getting a DUI was uncharacteristic of him. He would’ve never gotten in the car in the first place normally. Though barely over the alcohol limit, he was going so slowly, which is why they pulled him over. His level of impairment was a combination of the alcohol consumption but also the way his mind was working at that point. Truly, he was lost. 

We made the decision to move him back to Los Angeles in 2014, still without a formal diagnosis. He started in an independent living facility, but as time went on, we realized he needed more support. His driver’s license was taken away, his world started to shrink, and his memory continued to fade. But through it all, his spirit remained strong.

The hardest transitions

The transition into assisted living was not easy. My dad, ever the social butterfly, loved engaging with people—especially the caregivers, whose young minds fascinated him. He found a friend in a fellow resident and charmed his way into the hearts of the staff. But the challenges kept mounting. He suffered falls, underwent surgeries, and his condition worsened. One particularly devastating fall resulted in a brain bleed, accelerating his dementia. It was a turning point. He was never quite the same after that.

We moved him multiple times, each transition coming with heartbreak. There was a brief attempt at board-and-care, but he didn’t adjust well. Eventually, he moved into a memory care facility. It wasn’t perfect—no place ever is—but it was the safest option. Even then, the struggles persisted. A severe, undetected pressure wound nearly cost him his life. The negligence was infuriating, and we fought to ensure he received better care.

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Living in the moment

Through everything, my dad’s kindness and resilience have remained. He still greets me with warmth: “Sweetie, so good to hear your voice.” When we visit, we sing Bob Marley’s One Love together: Let’s get together and be all right. He’s always been so musical playing piano, still tinkering on it today, and also Spanish guitar in the past. My husband and he talk about music a lot. He also tells us, “You look marvelous, darling!” (said like Billy Crystal). He can still carry on some great conversations, even if they repeat. Known as Uncle Bob, amongst our cousins, he’s definitely a favorite. He hasn’t forgotten who we are—an immeasurable gift that I treasure every single day.

He still talks about traveling to Germany. We never tell him it’s impossible; we meet him where he is.

‍That’s been the greatest lesson in all of this—living in the moment. Focusing on joy rather than loss. Caregiving has tested me in ways I never imagined, but it has also deepened my love for him, for our family, and for the small, precious moments that make up a life.

I've worked as an actress and one of the things I’ve come to realize is that caregiving is a lot like improv. You have to go with the flow, accept what’s happening in real time, and respond with patience and humor. There’s no script, no perfect way to navigate it. You just do your best, say “yes, and…” and adjust to the next moment. That mindset has helped me find lightness in what could otherwise feel overwhelming.

I don’t know what the future holds, but I know this: my father is still here, still laughing, still singing, still loving. And that is everything.

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This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.

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as told to Liz Tenety

My husband and I met at Rutgers University, when we were in college. We met the one time he was in the library in four years. And I thought he was adorable. He had black curly hair. I just thought he was so cute. He was also wild. The second day I saw him, he had a bloody gash on his forehead, which I later learned was just one of many head injuries to come. But he was so fun and literally the funniest person I'd ever met in my life.

 He was also the smartest person I have ever met.

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When we were 23, we got married. He was in dental school in Baltimore, and then did his residency at Johns Hopkins. Then, we moved back to New Jersey. My husband started a general dental practice and did that for 30 years. He was beloved by his patients. He was the most popular dentist and everybody just loved him. He was very patient, very kind and excellent with the work. 

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We raised our kids, put our three kids through 12 years of college and then finally said, ‘okay, now we're done with college!’ It was like we built our life up to raise our children, pay for them to go to college, and we were on the same page, expecting a new phase of life together. And then we found out about his early Alzheimer’s diagnosis. 

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For a while I felt literally like I got to the top of the mountain and then somebody just smacked me right off of it. I was back at the bottom again like oh my God. That is how I felt for months, probably a year. 

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I had noticed that he was getting forgetful and that was not like him. He never got forgetful at all, he was like a homing pigeon with directions. Like if he was somewhere once, 20 years ago, he could drive there. And then he started having trouble getting back home to New Jersey from Manhattan. He was misplacing things. He was forgetting things.

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My husband’s Alzheimer’s came on quickly. I knew something was wrong. So I shared it with his parents, and his sister, who's a doctor. They said they didn't think so, but I knew …I knew him so well. So, I took him to a neurologist. We went for some neurocognitive testing. I took him for a spinal tap at Rutgers.  I honestly thought maybe he had a brain tumor,  but he had Alzheimer's. He was diagnosed at the age of 57.

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There is no family history of Alzheimer’s. Of the three known Alzheimer’s genes, he doesn’t have any of them.  He didn't have a high level of body inflammation.  As a dietician, I know Alzheimer's is sometimes called ‘Type Three Diabetes.’ Didn't have that. He had normal glucose.

However, I think it was his lifestyle: He didn't sleep enough. He slept five hours a night, had a very stressful, fast-paced job, and he had multiple head injuries over the years. He had a skiing accident where—he was really a fearless daredevil—he had skied into a tree on a double black diamond without a helmet. He also fell off Mount Katahdin hiking with my daughter.

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And then you pair that with the stress, with not eating as well as I did, not sleeping enough, I suspect it created neuroinflammation in his brain. 

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He was diagnosed in the worst way, through telehealth. Both of us had an afternoon of patients and in between, we had a telehealth conference where the neurologist said, well, you have, early onset Alzheimer's. So set an appointment for a month and okay, bye-bye. It felt so shocking and so harsh, with no empathy, no support, nothing. 

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For weeks, I would just cry. I couldn’t talk much about his diagnosis. I couldn't. As soon as I opened my mouth, I would cry. But you have to allow the grief because you can't just hold it in. You have to grieve for the part that you are losing. For weeks, I couldn't even talk about it without crying, but then it passed. Then I thought, ‘okay, this is what it is.’ This is what I have. And so let's do the best we can do with this new life, right? 

Being a dietitian/nutritionist, I am a researcher and I read literally everything I could find on Alzheimer's and the cause and the treatment and lifestyle recommendations and the latest research—everything. It just became my mission. 

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So, I put him on a strict protocol. I got him off of sugar. I put him on a low glycemic index diet, the way that I eat.  I started him on time-restricted eating and supplements to help with cognitive flow and to help decrease inflammation. He's a perfect patient. He lost 25 pounds. I make sure he sleeps well. I make sure he exercises. We're doing all the things to prolong this journey. I don't know what will happen in the journey, but I'm doing my best to prolong it.

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You can't worry about the future because we don't know what will happen—nobody knows what will happen with anything! You just have to enjoy the day that you're in, and not be reckless. You have to plan somewhat, but not obsess. You  just try to live in the moment that you have, that's what we try to do.

When a spouse becomes a caretaker, it's a different relationship. And I think as caretakers, we have to understand that and move with it. For example, intimacy will change, so perhaps it means you’re taking a bath together. You have to adjust to it. Your spouse is not going to be the same. You can't expect that they will be, and you can't get angry at them. It's not their fault. They have it. You have to love them in a different way. The love is the same, but it's a different relationship. 

What keeps me going is what I do have. I do have the time that I have with my husband. I’m grateful for the time that we get with our kids. Not every day is a great day but the great days are great days and they make me really happy.

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That said, it's hard to figure out the next step when you don't know the timeline of this because it is very unpredictable.

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To the spouses who are caretakers, it's really important to recognize that your life will change and accept that it will change and find the best in that change. Life together is different, but it can still be special.  

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This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.

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Julia B as told to Liz Tenety
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My dad was an absolutely amazing, brilliant computer scientist who worked on lunar research with NASA for the team that figured out why the moon reflects light the way it does.

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He was part of the team where, when the lunar regolith samples [moon material] came back down in one of the Apollo modules, he actually went out on the Ticonderoga and got to meet the capsule. He also worked with the USSR during the Cold War and worked internationally with scientists. 

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He was an incredibly curious person, just constantly trying to figure out how the pieces fit together. Asking questions like, why does the moon reflect light? I don't even know how to describe most of the work he did because I don't know those scientific words. Now, I'm trying to read his papers, and I'm realizing I actually have no idea what he was writing about.

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I wish I had gotten more of those stories out of him before the early Alzheimer's took his words. ‍

My dad had been losing his words for most of my life in a way that we now realize retrospectively was Alzheimer's. 

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He was the kind of dad who, when I asked him, so why does the moon change phases? He got out a ping pong ball, a flashlight, and the globe and would try to explain to me. And I like to think I got his version of curiosity.

The hardest part about Alzheimer's was watching his brain lose its curiosity and get stuck in these loops that he couldn't get out of. It was incredibly painful to watch a man who spent so much of his life processing the world around him, then later not be able to process the world. By the end, he hit the point where he couldn't open and read the birthday card that I gave him. He couldn't open it. We're talking about a man who had a PhD.

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We knew something was really wrong when he got lost driving to meet me at a place we had driven to together for decades. He got lost driving on the main street and could not find his destination despite having a GPS, despite having a map. Despite having all of that, he could not find his destination. That’s the moment I knew for certain we had crossed the threshold. And that’s when I had to take his car keys.

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We basically forced his hand into getting evaluated and at that time, it showed Alzheimer's or dementia of some variety. He fought that; he thought the testing was wrong, which it wasn’t. It was a very difficult time for him to be a witness to his own cognitive decline. He would say, “I’m lost all the time,” which is just horrible because he was aware that he was lost, aware that he was confused, aware that he didn't have his words right.

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To see this man struggle and decline, this man who had been such an incredible scientist, working with NASA, spending his whole life engaged in scientific inquiry, it was absolutely heartbreaking. I would not wish this disease on my worst enemy.

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It was like losing my father pixel by pixel.

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At first, I didn’t identify as a caregiver because my father was living in an assisted living community. But then I realized I was paying my dad's bills, I was doing his laundry, I had taken on most of the responsibilities of caretaking and life coordination for my dad. I became his caregiver.

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Even though I was not living with him and he was in an assisted living community, I was still the 24/7 backdrop of his life. I was always on call.  I never knew what each phone call was going to give me—because they have to call you for every band-aid, and I wanted them to call me—but it was just absolutely grinding. I was in a constant state of alert. It was hypervigilance: you're waiting for the other shoe to drop at any moment in time.

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In the last eight months of his life, when he no longer knew who I was, that's the moment I would say I stopped being his daughter and started being more of a caretaker.

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All the resources I had available to me were all very basic. I'm over here drowning! Trying to get him to agree to shower and let me cut his toenails, and he won’t eat his food and he’s trying to move to Australia or walk to Wisconsin. I didn’t need to know what stage of Alzheimer's that is. . .  I just need to know how I'm supposed to survive this. There was no manual for that. . . I wish I had had access to the daily tips and tricks of how to work with the Alzheimer's brain. 

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I want other caregivers to know that they shouldn’t be afraid to ask for help, or to just fall apart every once in a while. You’ll have to pull yourself back together, but it’s okay to fall apart. 

It’s the little things that keep you sane during this journey. 

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For me, I kept a photo of my dad on my desk for years that was classic,‘My Dad’. . When I looked at this photo it's the love in his eyes that looks like the dad I knew. I had to keep that photo on my desk so that when the phone rang for the 27th time with him calling me trying to charge his TV remote with the computer charger, or not knowing which end was up, I had the patience to not let the frustration show up in my voice. I needed to remember who he truly was, and not always focus on what Alzheimer’s had done to him. 

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When I was able to keep his true essence in my mind, it helped me stay patient, to not let the frustration show up in my voice. 

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That is the hardest thing: You cannot let them know that you are frustrated because they don't remember. You remember. But they did not choose this. They are not trying to aggravate you, they just don't know anymore. I can't imagine how scary that must be. So trying to hold on to that for them—and being there for them when they are scared. 

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I am sharing our story because it's what my dad would have wanted. He would have wanted there to be something good that came out of this horrible, horrible experience. And so anything that I can do in his honor, I'm going to do. But that's also who I am–and who he was. 

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This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.

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