Enduring: A Story of Love, Dementia, and Lessons Learned

By Donna Larkin

One wife's story of caring for her husband with dementia—and the lessons for caregivers she learned along the way.

 

After the death of her husband, author Donna Larkin realized that she—and the other women in her dementia caregivers' support group—had accumulated invaluable strategies and tools that might be helpful for others recently finding themselves in a similar situation. In Enduring: A Story of Love, Dementia, and Lessons Learned, Larkin shares a chronology of her husband's Alzheimer's disease and her caregiving approaches, including those gleaned from her support-group friends and experts she met along the way.

 

An honest, loving, and unflinching portrait of caregiving, Enduring draws on nine years' worth of notes, emails, and journal pages written while full-time caregiving at home and while later helping to transition her husband into a memory-care facility. A chronicle of the couple's journey from diagnosis to passing, her stories—with vulnerability, straight talk, and good humor—uniquely illustrate what it means to be a full-time caregiver for a loved one with Alzheimer's disease.

 

As Larkin and her husband faced down the realities of his condition, a problem-solving approach kept her focused on finding solutions where possible—while her heart kept her focused on the man she knew her husband to be and the love they still shared in the face of many obstacles. For anyone struggling with the realities of a loved one's battle with dementia, Enduring is a reminder that you are not alone.

• Language: English
• Publisher: Ennistymon Press
• Release date: Feb 27, 2024
• ISBN: 9798988952510

Book preview

Preface

My caregiver friends and I worked as hard as we could, some for a decade, to learn what we needed to know to competently care for our loved ones with dementia. Most of us went to classes and support-group meetings, read books, and networked with knowledgeable caregiving veterans who were willing to share their expertise and experiences.

After our husbands passed away one by one, we voiced a common frustration: the knowledge and experience we had amassed was going to be lost. Then the pandemic took hold. With plenty of solitude and time on my hands, I had the opportunity to at least pass on the story of one caregiver.

I began the project by printing out emails with detailed descriptions of my husband’s condition⁠—emails I’d written over seven or so years to family and friends. Then I pulled together the diary and calendars I hadn’t been able to bring myself to throw away. And I printed text messages I’d sent over nearly ten years. The resulting book is an abbreviated nine-year journal, the story of one person’s approach to and efforts at full-time, primary caregiving, or at least of the events and caregiving aspects that, at the time, I thought were important enough to document. Since I didn’t record the stories of other family members and friends who were also affected by my husband’s dementia, their stories are not included here except where they intersected with my own story. And so, this caregiving chronicle is skewed toward a wife’s perspective.

The events and challenges that were on my mind at the time I wrote an email, note, or calendar entry formed the basis for this book. Even though I may have missed documenting some events, I am sure new caregivers will be left with a strong sense of what it took for me to be a dementia caregiver for my husband. On the flip side, a story or two may seem a bit too detailed for the casual reader, especially around the topic of hygiene. However, my target audience is current, active caregivers who may need the included information.

Although I’m hoping that my story will help to prepare caregivers, I am not a medical or legal expert. Nothing in this book is intended to be professional advice. The pages here simply tell my story of caregiving and describe the things you may feel I did right and the things I could have done better. I sincerely hope that every caregiver finds many other sources of information about the type of dementia afflicting her loved one and finds advice from many different types of experts. The wider I ventured with my research, the better prepared I felt as a caregiver.

The caregivers I came to know over the years desperately needed help, and most didn’t get anywhere near enough of it. My heart goes out to those struggling right now to care for their loved ones. This book is dedicated to you. Know that I send prayers your way every day.

Introduction

During the hot summer, I developed a habit of visiting the TCBY frozen-yogurt shop near my house once a week. I’d order a cup of soft golden vanilla with chocolate chips on top, then sit on a bench on the shop’s front patio to watch the traffic go by as I savored the cool sweetness. For the first time in two decades, my evenings were used as I saw fit, and what I wanted⁠—needed⁠—was to remember how to enjoy my life again. I had bought a little patio home just a few months earlier and worked with a friend to renovate it. Now, on weekend mornings, I took long walks on the greenbelt before it got too hot, and on Saturday nights, I learned line dancing with girlfriends. I was trying to find my way as a single woman.

One really hot evening in mid-July, a handsome gentleman sat down on the bench next to mine. Ostensibly watching a car drive by, I observed him out of the corner of my eye. He had an air about him, a man’s man way of carrying himself as some men do, as if they are in a cologne or tequila ad in GQ.

When I looked in his direction, he smiled wide, then said, Hello. Quite a hot day today, wasn’t it?

His smile accentuated deep dimples, which made me want to smile, too. I don’t remember exactly what I said about the weather in reply, but I do remember that soon we were venturing beyond small talk, speaking openly about our professions, his retirement, our respective kids, and what we had been doing with our summers so far. I was mesmerized by his sparkling blue eyes and immediately drawn to his particular magnetism. Actually, he made my heart flutter.

I’d been divorced for a year and a half, and I savored my freedom as much as I savored every bite of that frozen yogurt. I was intent on protecting my new life, my new sense of peace. For the first time in as long as I could remember, I was content. Life was far from perfect, but it was good enough. Still, I really took my time that day finishing my yogurt and was sadder than usual to see the white cardboard bottom of the cup. If I were to be honest with myself, I would have to admit that I hated leaving the conversation, that I wanted to stay and talk to this man, this Lee with the bright blue eyes. I was good at hiding those feelings⁠—even from myself⁠—and put on a big smile as I put my spoon in the cup and got to my feet.

So, Lee said casually, I know that this is probably presumptuous, having just met you on a bench outside a frozen-yogurt shop, of all places. He stopped to laugh, then continued, I know I am being a bit forward, but I was wondering . . . would you consider going to dinner with me?

He was giving me an awesome grin that accentuated those crazy dimples, which made him so endearing. It was as if I were under a spell⁠—or maybe that was an excuse for why I said yes. I had a strong sense that I could trust him, but then I got a jab in the gut and remembered my oath to avoid any entanglements. I quickly told him that I wasn’t interested in a relationship right now and that he would need to agree that this was a one-time-only date. He just smiled a big smile.

On our first date at the Chart House, Lee opened the passenger door and offered his arm. It had been a very long time since a man had done that for me. As we walked toward the restaurant, I again observed him out of the corner of my eye. He was trim, with broad shoulders. His dark hair and gray sideburns and mustache were perfectly trimmed, and his clothes fit beautifully. In fact, his tie was knotted so perfectly, I thought it had to be one of those fake cheater ties with an elastic band that slips under the collar. (I learned later that he really did knot his ties perfectly.) I remember thinking that, with those deep dimples, this man strongly resembled a younger Sean Connery.

Lee had a reservation, so we walked right through the lobby and past the crowd waiting for tables. The host seated us by a window, in a room dimly lit by the candles on each cloth-covered table. Outside, cottonwood trees lined the river, creating a dreamy, dusk-muted backdrop. As we sipped our wine, he turned the conversation back to me, acting as though he was completely taken with everything I had to say. The time flew by.

After parking in my driveway, Lee again opened the car door for me and walked me to my front door.

Can I call you in a couple of days, to go out for coffee?

Yes, of course, I said, smiling at him but not reaching for his hand or leaning in to give him a hug. I just couldn’t. Lee must have been able to tell I needed the distance and didn’t lean in either.

From my front window, I watched this mysterious man return to his car, walking tall yet with grace. For two hours, I had felt like a princess. He had made me feel like a princess. Oh my gosh, I thought with a sigh. Who is this guy?

During the next six months, on the days when we didn’t ride bikes, cruise on his boat, go to plays or concerts, take picnics to the park, or have dinners out, I’d work out on my elliptical at 7:00 p.m. like clockwork, then take a shower and listen for the phone call that always came at around 9:00 p.m.

Lee’s voice was deep and clear, a radio announcer’s voice, and he was really funny. He told stories about the places he’d been, the people he had met, and the amazing experiences he’d had in Iowa, California, Texas, Florida, Massachusetts, Illinois, England, Spain, Greece, Turkey, and Iran. He described his work, first in weather forecasting and then in a solar program, working to calculate the probability of future solar activity while stationed in observatories around the world.

Lee called me the Blonde in a teasing tone and made jokes about how I fit the stereotype of the excitable, impulsive blonde. Yet he teased in a way that let me know he was attracted to those qualities, that he found me intriguing. He’d also laid out the evidence on why he thought I was smart and capable and told me he was proud of my recent accomplishments, ending nearly every call by saying how lucky he was to have met me. I’d hang up feeling appreciated and respected for who I was, even my airheaded side. I had never talked for so long with anyone on the phone. After some months had passed, Lee started speaking sweet nothings in Spanish and Greek and mailing me beautiful love letters when he traveled. The effects of those calls washed into my days, giving me a new confidence at work.

I had completed facilitating a business process redesign for two departments of an organization in town and then was assigned as interim manager for one of those areas. The organization was converting to a new enterprise-wide information-technology system. It was a huge project, and the hours were brutal, with frequent twelve-hour days, often seven days a week. Lee picked me up from work midday once or twice a week.

He advised, You need time away from work, or you’ll burn out. I’m sure all of your coworkers need breaks and take them, too. You can’t allow yourself to become a slave to your job, or you’ll end up hating it . . . And so on until he wore me down.

I’ll never forget walking out of the old brick building and down the sidewalk that bordered a permit-only parking lot. I’d always see Lee first, waiting patiently in his car as it idled at the curb on the other side of the street, with a serious look on his face as he tried to catch sight of me. Once he spotted me waiting to cross at the corner, the widest smile would light up his face. Lee always had a nearby restaurant in mind and made sure I got back to work within my self-imposed ninety-minute time limit.

Every so often, I’d receive a large, unusual flower arrangement delivered by Jack’s Flower to my office, with a handwritten card attached that usually had a few lines about what a jewel I was in his life. I teased Lee, calling him my Sean, as in Sean Connery, and he teased me right back by signing those romantic cards simply as Sean. None of my coworkers’ boyfriends or husbands sent them flowers, and the women naturally became curious about the man who was responsible for these huge bouquets. When Lee started calling me his princess, I really felt like one.

Yet despite all of Lee’s wonderful qualities, I decided to break up with him after six months. I was sure that he was still grieving his late wife’s death from cancer two years earlier. At the time, I had not yet experienced or been compelled to learn about the grieving process. Obviously, I thought, Lee wasn’t ready for a relationship. And I suspected I wasn’t either. The final straw, however, was Lee’s age. Eventually he divulged that he was sixty-eight⁠—much older than he looked and acted. Our twenty-year age gap scared the heck out of me, and, to be honest, it was a little embarrassing. I had overheard a few snide comments about our May-December relationship.

I knew that if I tried to break up with Lee in person, I’d never go through with it, so I sent him a Dear John letter. He honored my wishes by not contacting me in response, and I missed him. Badly. Every day. Regardless, I held strong, reminding myself of the very reasonable reasons for the breakup, telling myself that I’d done what was best, that I’d ripped that bandage off and now I just had to wait for the sting to fade away.

That wait lasted six months. After an especially tough week at work, I couldn’t stop myself from calling Lee. To my surprise, he didn’t bring up the Dear John letter at all and offered to meet me for coffee.

Sitting down in front of him, I blurted out, I’m sorry. It’s incredibly selfish of me to ask for your time after . . . everything. After treating you badly.

Donna, he said, taking my hand, I don’t want to hear another word about the time apart. You needed it.

I gazed into his blue eyes as I spilled out my problems. My work project wasn’t going well, and one of my coworkers had suffered a heart attack from the stress.

I can feel myself going down, too, I said. I’m working as an interim manager, and while keeping the department running, I’m also training the staff on the new system. Every day I find broken accounts, accounts where the new system is not cross-referencing correctly, and then I have to manually go into the system to correct the links within those accounts.

What I didn’t say was that I had realized that Lee had been there for me months ago, in a way that no one else had. He was the calm and the peace at the end of the day, the cheering section, the gas in my emotional tank. During the last few months, instead of spending my evenings with him, I’d been going home to an empty house every night, feeling exhausted yet too stressed out to sleep.

I’m sorry, I said again, about all of this whining⁠—

Donna, he said, taking my hand again. Are you training the folks on the new system and fixing the accounts as best you can?

Yes, I said, but the people I’m training look to me for answers that I don’t have, and the customers affected by the broken accounts are worked up by the time they reach me.

Well, it sounds like you’re doing everything humanly possible. The problems are not your fault, but you’re making sure they don’t impact the customers any longer than absolutely necessary. There’s nothing else that anyone could do. Be proud of your effort and proud that you care. Take breaks with the knowledge that you are doing all you can to help.

By the time we’d finished our coffee, I felt that I could deal with tomorrow’s challenges, and I had to admit to myself that this was it. Despite the age difference, our connection was undeniable. We were inseparable from then on.

After a year or so, Lee asked me to sit down at his kitchen table one afternoon so we could talk.

If you want to end the relationship, now is the time, he told me.

That ship has sailed, I thought as he continued.

I have been thinking about the fact that, if we continue on, our age difference is going to become a real issue at some point. We have to face the possibility that you could be spending years in the future caring for me, and I . . .

He paused; his uncertainty was just so foreign. I don’t want to do that to you. But on the other hand, I also want to be with you for . . . well, forever.

Lee was strong, surefooted and clearsighted, the most confident man I’d ever known. I just couldn’t picture him any other way. I certainly couldn’t imagine his being infirm and requiring my care. I remember thinking that I’d rather have a few happy years with Lee than a lifetime of missing him.

After a minute or two, I gave Lee my opinion about our relationship. You know that I’ve been under the care of a cardiologist for almost twenty years. It could just as easily be me who needs your care someday. Let’s not worry about tomorrow. I want to be with you, too, I told him.

We never revisited that decision. Lee often said that it was fate that caused us to meet at the yogurt shop; I thought God’s hand was in our meeting. We both were certain as could be that we were meant to be together. It was easy to ignore snide remarks about our age difference; they never could pierce our happiness bubble.

Chapter 1

2000s

From the very beginning of our courtship, Lee and I thoroughly enjoyed our lives together: biking, boating, picnicking, going to concerts and plays, walking the greenbelt, traveling, and gardening. Most of all, Lee loved to go out to eat. If someone could truly live for something, then he lived for going out to restaurants. In fact, if it were up to him, we’d go out to eat every day.

Brunch had always been Lee’s favorite outing. Each Sunday, he practically ran out of church once the service was over so he could beat the brunch rush at whichever restaurant he had already chosen. We tried most new establishments within a month or two of their opening. I have to admit, I did love having a leisurely brunch, especially during the seven or eight months a year when it was possible for us to dine al fresco. Lee always ordered the same thing⁠—two eggs over easy, hash browns, toast, and bacon⁠—but he made a point to seek out places for me that offered unique veggie omelets, quiches, and pastries.

On Friday nights, we often went to Casa Mexico. Lee ordered picadillo enchiladas and chatted in Spanish with the staff while I tried fajitas, chili rellenos, tamales, or the nightly special. At his favorite Greek restaurant, Romio’s, Lee casually conversed with the Greek owner while eagerly waiting for his pastitsio to be served. Of course, we’d go by TCBY for frozen yogurt at least twice a week.

We were happy.

The First Challenge

After six or seven years of marriage, Lee started having trouble sleeping through the night. This was a sad turn of events, given how much we both looked forward to lying next to each other at the end of the day. Nothing made me feel safer or more loved than resting my head on Lee’s shoulder and feeling his arm around me, pulling me into him. As the insomnia worsened, he developed a routine of waking up in the wee hours, which woke me up, too. At a routine medical appointment, my primary-care physician asked me if I was tired⁠—apparently sleep deprivation was written on my face or in my body language.

Perhaps you could move into a spare bedroom? he asked.

When he saw my face drop, he added, Just until the cause of Lee’s sleeplessness can be figured out.

Lee asked me to ignore the doctor’s advice, but unless I quit my job and took daily naps, it would be impossible. Then the sleeplessness got worse. Lee became unable to sleep for hours at a time. Some nights he got only two or three hours of sleep, and that caused him great anxiety.

I just have to find a fix, he kept saying.

During the day, he looked like a sleepwalking zombie. Lee’s doctor ordered a study in a sleep lab, which resulted in a severe apnea diagnosis. The wires and monitors hooked up to him during that one night in the lab revealed that he had stopped breathing multiple times every minute. The sleep specialist, a pulmonologist, was shocked by how often during the night Lee was oxygen deprived. A CPAP breathing machine was ordered, but Lee got so frustrated whenever he tried to sleep with its mask on that he eventually refused to even talk about using it. Short of cooperating with the CPAP, there was nothing more that could be done about the apnea.

To endure those middle-of-the-night waking hours, Lee developed a habit of watching TV in bed. Even though I was now sleeping in the next room, the sound from the television woke me up, which defeated the whole purpose of sleeping separately. A year or so into the struggle, I found a set of wireless headphones that worked with our bedroom television. Lee thought they were a Godsend! Now he could turn up the volume as loud as he wanted without worrying about waking me.

Diagnosis

In the summer of 2009, Lee and I took a trip to his hometown in southwest Iowa to visit extended family. Initially, there’d been some confusion about whether we’d go to Lincoln, Nebraska, to see Lee’s brother or whether he would visit us at the house of their sister in Iowa. Lee and his brother went back and forth on the phone, trying to get the plans worked out. In the end, his brother and sister-in-law made the drive to see us. We had a great time together.

It was revealed during the visit that his brother had Alzheimer’s disease, which came as a huge shock, especially since, to me, he seemed fine overall. However, after we spent a couple of hours together, I noticed that he seemed to get very weary. His wife told me that she did all of the driving now, too. Immediately after everyone posed for a group picture under the big tree in the front yard, he got into the passenger seat of his car, looking exhausted. Lee’s brother died three years later.

The day after we flew back home, Lee told his son and daughter-in-law at brunch, with