Two conflicting emotions were woven inextricably throughout the six years between my father’s Alzheimer’s diagnosis and his death: love and grief.
The love was simple and clear. It’s what made me willingly put everything else on hold to care for him, what made me search for things that would bring him pleasure or comfort, what made me rejoice every time we had a special moment together.
The grief, however, was not at all simple. To this day, three years after his death, I am still trying to sort it out.
Daddy first showed signs of dementia as early as 2008, though I was the only one who noticed something was wrong. A sharp-as-a-tack lawyer, who also held Ph.D. in chemical engineering, my father was not someone who was easily mixed up. But I noticed he started to confuse elementary concepts—I’m a lawyer too, so it was obvious to me, but not noticeable to others.
Even though I noticed he was acting differently, I couldn’t accept that he might have Alzheimer’s, which was then the only type of dementia I knew. I researched until I found Mild Cognitive Impairment, a condition that sometimes (but not always) leads to Alzheimer’s. It’s a dark day when the best hope is for MCI, but that’s what I clung to.
Grief came flooding in the moment his doctor spoke these words: “After reviewing your exam, your neuropsychological tests, and the results of your spinal tap, we can say with certainty that you have Alzheimer’s disease.” I cried, but Daddy maintained his typical humor and his consistent care for my well-being.
We went to dinner after that appointment. I was so nauseated I could hardly eat, but Daddy was his usual chipper self. I wondered how he could be unfazed by what I could see only as devastating news.
The answer was revealed at his next doctor’s appointment, several months later, when I realized that he had no memory at all of the diagnosis. The diagnosis was pronounced and gone, apparently within minutes.
The grief of watching Daddy’s day-to-day losses came quickly: seeing him unable to figure out how to unlock a car door, discovering he could no longer dial a telephone, watching as he lost interest in computers. Daddy loved technology—he was one of those people who carried around what was called a “portable computer” back in the ’80s, a 50-pound device that had to be transported with a luggage cart. He was one of the first lawyers in Georgia to use a computer in court. After his diagnosis, he was not even interested in turning on a computer.
As the first (and often one) to observe these losses, I grieved for my dad’s shrinking skill set. He hardly seemed to notice.
Even as the disease took hold, my father, always someone who had systems in place, tried to outsmart it. About a year post-diagnosis, I found an enormous stack of notecards listing names of people he should know, including my mother, who died in 2003, and directions on how to do everything from turning on the TV to making coffee. His efforts, along with his legendary intelligence, successfully hid his growing cognitive challenges from all but the most astute observers.
One day, we were on vacation in Grand Teton National Park, one of my dad’s favorite places that our family had visited nearly annually for the better part of 40 years. I asked what he wanted to do. My dad turned toward me with tears in his eyes and told me that he couldn’t remember anything about the park and he didn’t know what to do, so he’d let me decide.
Tears flowed from underneath my sunglasses for hours after that conversation, with grief for my dad and myself, for the loss of those past memories, for the detachment from his wife, my mother, whom I realized he no longer remembered.
As I cared for Daddy, I experienced—willingly, but with regret—the loss of my own independence and the loss of professional opportunities. I stepped off the leadership track of a professional organization, giving up the clear path to a goal I’d held for 20 years or more. I couldn’t share my disappointment with Daddy because he would have been horrified that I relinquished that long-desired role because of his health. I took him with me on my business trips for the first three years after his diagnosis before I had to eliminate almost all travel, and when Daddy was admitted to home hospice following a cardiac crisis in 2014, I stopped marketing my business and declined most new clients.
I made these decisions myself, but that didn’t blunt the loss. And the guilt for feeling the loss was enormous.
Daddy and I both lost the kind of future certainty that humans believe to be part of a normal life: What will we do tomorrow, next month, next year?
Suddenly everything was in doubt, and I prepared for his final Christmas three years in a row before his death in 2017. I’m an only child, as were both of my parents, so I also lost my past. I know a great deal of family history, but I lost my opportunity to learn more with my father’s inexorable slide into dementia.
The daily losses were the hardest for me to bear, as they came with punishing frequency. I am fortunate that my friends and church family supported me throughout Daddy’s dementia journey, but I often chose not to talk about the latest hole in my heart. After all, who wants one teary-eyed visit after another?
I became expert at faking a rather convincing smile and laugh, but I withdrew. I once recognized over the course of a rare dinner out with friends that I had nothing to add to the conversation. I felt like the Dementia, Death, and Dying Girl.
That loss of self-identity was unexpectedly painful, and when I realized that, at 47 years old, I hadn’t even been out after dark in several years, I felt as if my own life was in tatters.
Of course, there were shining moments: when my best friend came over to watch Downton Abbey, when I could spend a lazy, hot afternoon at the pool, or when I’d put on music and Daddy and I would laugh and dance together. These (and other happy moments) were a bright light in an otherwise dark several years.
The day-to-day grief for losses that Daddy and I were experiencing was deepened by my anticipation of his death. We enrolled in home hospice after I declined a pacemaker for him, a decision that I absolutely, categorically knew he would have made and therefore made as his medical representative.
When the nurse came to talk to me the day he was admitted to hospice, I told her I could put my business on hold for a few months but that anything longer would be challenging. She patted my arm and smiled sadly as she told me that he wouldn’t possibly live more than a few weeks, a couple of months at the most. As it turned out, Daddy was in home hospice for almost 33 months.
Of course, I appreciated the extra time together, but the tension of waiting for the expected sudden cardiac event faced the knowledge that, absent such an event, my beloved Daddy would eventually quit eating and drinking or he would develop aspiration pneumonia—two results of forgetting how to swallow thanks to the thief Alzheimer’s.
My mantra became, “Don’t make anything mean anything until it’s clear it means something,” as an effort to avoid panicking over every single change, but that was hard to live by.
As he withdrew more and more, when he lost the ability to walk, when the moments of connection were fleeting and less frequent, I felt grief for his death by degrees though he was still living.
When we reached the cascade of events that I knew Daddy couldn’t recover from—bedsores, despite best efforts to avoid them, repeated infections that his body couldn’t quite fight, and weight loss that took him to somewhere in the range of 130 pounds on a formerly 6’2” frame—that anticipatory grief turned into grief for his death.
His death was as gentle as I could ever have hoped for: surrounded in love, in a quiet room, with voices raised in song and prayer. I had told Daddy over the last three years that it was ok for him to leave when he was ready, that I would be ok, that my friends and my church would take care of me, but the grief of watching him take his last breaths was so overpowering that I could hardly breathe.
In the years since Daddy’s death, grief has come up at times both expected and surprising.
I’ve been most surprised by the guilt that accompanies my mental review of the years I cared for him. I know that I did everything I could have for him, and yet I know that he suffered. It’s difficult not to question whether I could have done something more or better, even though with the benefit of hindsight it’s hard to see what would have created a meaningful change.
I’ve also been surprised by the relief I feel that he’s no longer suffering. What does it say that I feel relief about the death of my beloved father? It feels monstrous, but it says that I saw his suffering, that with deep empathy I felt that suffering over a period of years, and that I am grateful that he was spared more suffering.
Nevertheless, the guilt and the relief magnify my grief at times.
There’s also a lighter aspect to my grief, and that comes in the moments when I remember the fun we had, his joy when we were able to get in the swimming pool for the last time, or when I watched him pause his incessant walking, a symptom of Alzheimer’s agitation, to take communion that a dear friend brought us each week in the last year or so of his life.
During those rare times, I could tell that he was absolutely aware that he was touching the sacred. Grief and love coexist again when I remember those moments.
My grief is both more intense and also lighter (how that’s possible, I don’t know) when I look at my life today: I’m living in my own space now, having moved first to a beautiful new apartment and then to my soul home of Wyoming. Pre-pandemic, I traveled and visited friends often—I was even out past midnight more than a few times! When I talk with people, I have a variety of interests to discuss and a lilting heart, mostly, that yields easy laughter. I am building a new life, creating the way I want to live after all this time.
Even though I would gladly put this beautiful new life on hold if only I could be with Daddy, I know that this—this joyful living—is exactly what he would want for me.
Here, after the end of Daddy’s dementia journey as at the beginning, grief and love are inextricably intertwined, and so they will remain.