Two weeks after my husband, E., was diagnosed with a neurodegenerative disease that has no treatment or cure, he left me. At the time, we were preparing to depart on a long-planned family trip to Washington, D.C. Without warning, he declined to join us. He insisted that I take the kids without him, saying he preferred to stay back and clean out the garage. Objecting and pleading accomplished nothing, so I acquiesced. Maybe he just needed time alone to process what the diagnosis meant: His career was essentially over, and in some unknown period of time, life as he knew it would end too.
While we toured museums and national monuments, E. called, texted, and emailed daily to offer love and assurances. As we waited for him outside baggage claim after a long day of flying, I couldn’t wait to fall asleep in his arms. He arrived in my car rather than his van — weird, considering we had so much luggage, but I was too tired to care. He hesitated briefly before stepping out to hug us warmly. My children from a previous marriage, 9 and 11 at the time, adored him and chatted nonstop while I held his hand, which trembled slightly as his thumb stroked my palm.
At home, my spirits lifted with the garage door. The interior was sparkling. He beamed when I kissed and complimented him. Together, we pulled the suitcases toward the porch to greet our German shepherd.
One step inside changed everything. My eyes scanned the living room, taking inventory before I could process what it meant. Missing furniture? He didn’t even allow me to set down the bags before he said, “By the way … I moved out and filed for divorce.”
“What? What?” Gasps, not words.
“I filed for divorce!” he repeated loudly, as if I hadn’t heard him the first time.
I asked to speak with him outside. My chest tightened as I held a hand against the garage wall for balance. “You called and wrote affectionate notes every day,” I said, as if this evidence might change the outcome. “Just a few hours ago, you said you loved me and missed me and couldn’t wait for us to come home! What happened?”
“Oh.” He shrugged. “Those were all lies.”
From there, the strangeness escalated. I soon discovered that he had driven my car to the airport because his contained the pistol, shotgun, and hollow-point ammunition that he owned and didn’t want me to know he was taking from the house. Then a process server, obviously prearranged but completely unexpected to me, roared up the hill on a motorcycle to issue an order to prevent me from telling anyone about E.’s illness — after he’d been the one to suggest to me that we co-write a book about it. The next day E. returned to our house, walked in the front door as if nothing had happened, and asked me out on a date. He thought Italian might be nice.
So … what now? I wanted to stay with my husband because I loved him, because I wanted to help him maintain his quality of life for as long as possible with the utmost compassion as we navigated the present and future together, and because he was no longer capable of making a decision that could affect his health and safety. Divorce papers didn’t change my desires or absolve me of my responsibilities. And what about the welfare of others? His driving had grown unpredictable. What if he injured or killed someone with his car? Or did something illegal or deleterious or inappropriately sexual? Or propelled us into debt? All were plausible with someone dealing with frontotemporal dementia. According to UCSF’s Weill Institute for Neurosciences, frontotemporal dementia results from the degeneration of the frontal and temporal lobes of the brain, which control decision-making, behavior, emotion, and language. It is irreversible and often strikes at younger ages — between 40 and 65 — when people are at the peak of their careers. Symptoms include language dysfunction, movement disorders, and changes in behavior and thinking.
Right after the diagnosis, I thought we were in the middle of a medical crisis— together, in a marriage that had been intimate and strong. Now I was facing dilemmas I’d never imagined. What should I do to help him, the children we were parenting together, his colleagues, the community, myself? Try to declare him incompetent to fight the divorce and save him from himself? Was that the most compassionate and empathetic course of action?
Before E.’s symptoms began, our relationship had been emotionally, intellectually, and physically vibrant, embodied in a true partnership. He welcomed and treated my children as his own. We sought and honored each other’s advice. We made each other laugh. He brought me coffee at five o’clock every morning before we ran seven miles at a relentless pace, always leaving me feeling a step behind.
We were 37 and 58 when we married; our first years together passed so energetically that I can’t recall when he began having trouble processing information, assembling a sentence, or completing tasks that should have been simple for him. There’s no report: Ah, yes, it started the Thursday after the Super Bowl, and everything went downhill from there. Onset is subtle and sporadic and nonlinear.
Over many months, his behavior became more erratic — in stark contrast to his previous disposition. This included drastic mood swings and a tenuous grasp on reality or outright lying; an inability to manage finances at home, a budget at work, and many duties in a leadership job in which he had been a star; dubious investments we could not afford; secretive communication and back-alley meetings with thieves to buy back his computer after it was stolen from our home; false accusations toward my son for stealing E.’s shoes; vacillation between his usual affection and seething responses such as, “You disgust me!”; a Valentine’s Day card that celebrated our love and teamwork with an added sticky note that read, “You are not suicidal.” I tried to persuade him to see a doctor, repeatedly, without success. “You’re the problem,” he said in a disparaging (and highly uncharacteristic) tone. “You ask too many questions and cause me stress.”
During this confusing time, before any sort of diagnosis, we met up with his former colleagues for a work event. When I discovered that these physicians feared he might have a frontal lobe brain tumor, I used their concern to facilitate an honest and poignant conversation with E. one night. When he finally acknowledged his difficulties, I curled up against him and cried. My arms pulled him close — not a hug as much as the desperate clinging that comes when you start to understand what you are losing, what you’ve already lost.
Tears ran down his face, which seemed oddly vacant. “Are you crying for me?” he asked. “Or are you crying for you? Or for us?”
“All,” I answered.
“Don’t leave me, Katherine.”
I did not let go of him for the rest of the night.
On our way to see the first neurologist, he said to his closest friend, “I hope it’s a brain tumor.” No matter how tragic, he wanted something defined, understood, buttressed with a treatment protocol.
After an intensive, three-day assessment that came later, the medical team explained that his primary progressive aphasia was a form of frontotemporal dementia. The cause of the abnormal folding or deposits of proteins that lead to these impairments is uncertain; most people have no family history of this or any other type of dementia.
People with frontotemporal dementia are often misdiagnosed with psychiatric disorders, Alzheimer’s disease, vascular dementia, or Parkinson’s disease. It can take years to obtain an accurate diagnosis. The number who remain misdiagnosed (or undiagnosed) is difficult to identify.
Dementia, memory loss, and Alzheimer’s disease are not necessarily interchangeable terms. It’s more complicated. Dementia is a syndrome that can describe many symptoms and actions, including behavioral changes and a decline in cognitive function and emotional control. Memory loss may not be a factor until later, if at all. Alzheimer’s disease, which usually begins with memory issues, is the most common cause of dementia, but there are several other sources as well. These can be hard to differentiate. Pathologies mingle. And a diagnosis may not even be definitive until an autopsy can be performed.
In addition to communication difficulties that eventually would leave E. mute and unable to comprehend, the medical team highlighted lapses in judgment and insight, emotional blunting and an absence of empathy, delusions and paranoia, deficits in planning and other executive functions, irritability and impulsivity, financial ineptitude, motor control problems, obsessive behavior, and severe changes in personality — all of which I had already experienced. They also explained that some people become aggressive — verbally, physically, or sexually. And his driving and firearms? Definitely problems.
Prior to the medical evaluation, he was deeply affectionate, cried often, and wrote me tender notes. One read, I’m sorry I’m not the man you married. When we left the doctor’s office, he glowered at me, furious that I had spoken truthfully to the medical team, who sent us home with minimal instruction. He demanded that I keep his diagnosis confidential, even from his adult children. Intellectually, I understood that holding onto his identity as long as he could was a primal response. But emotionally, it tore me apart. Only anguish and loneliness could penetrate my shock. I also became afraid of what he would do, given that he was not in control of himself much of the time. I delayed telling friends, including those who suspected something was wrong, but found myself sneaking away to call my father, desperately searching for support. When E. caught me in one of these conversations, his wrath was frightening.
I tried to explain to my children, who not only had witnessed unsettling encounters but had found themselves unwitting targets. They responded, “Mom, we know it’s in his brain,” and showed incredible patience and sensitivity in their interactions with him. Another surreptitious conversation with his second-in-command at work took all the courage I could summon. When I reached out to the medical team, the social worker responded that I had a “moral obligation” to tell his children because he could be “a danger to himself and others.” When I spoke with his children, I tried to present facts cogently. But the unsteadiness in my voice revealed my fear that they might not believe me — especially since I waited until he filed for divorce to say anything, which I knew could be interpreted as something resembling bitterness (on a good day). They were kind and receptive at the time, but whatever he said to them later ended all communication between us, even as my relationship with him continued.
It took me a long time to realize how much damage I had done (and continued to do) by rewriting all of his emails, speaking for him, completing his expert witness evaluations, and doing portions of his job throughout the previous year. His role at work had required him to give public remarks, and this continued briefly, even as his responsibilities shifted. On one occasion when he was honored in front of several hundred people, he asked me to greet guests with him, take over conversations he could not manage, and deliver a speech that I had written for him. While my only objective was to help him, the actual result was that few people understood the severity of his limitations, which he could cover up in brief exchanges over lunch or during a run.
It came down to this: Anyone who had not spent every minute with us could not understand the true context of what was happening, or the complexity of what we were enduring. It simply wasn’t possible.
The combination of impending death and divorce was agonizing, often spinning me away from reasonable thought. I sought counsel from ethicists and attorneys, who gave me conflicting advice. Battling the divorce seemed like a moral imperative. Plus, I had promised never to leave. My devotion was steadfast, and the concept of breaking that oath anathema to me. Yet what felt like an act of compassion grew so tangled and nebulous that I could not find my way through it.
Eventually, that battle threatened my children’s welfare, my health, and my finances without benefiting him the way I intended. So I capitulated without walking away — simultaneously vowing to continue helping him however I could as I settled into a townhouse with my children and started a new job. After forbidding the doctors from speaking with me right after he filed for divorce, he soon asked me to accompany him to appointments, where I noticed that almost nobody understood what was really happening. E. and I exercised, went out on dinner dates, attended social events, and occasionally slept together. In those moments of intimacy, precarious and unsafe as they were, I knew my husband again. He reached out to me when any problems arose. One night, for example, I answered a call to hear him yelling that he was going blind. Yet he could not explain to me — or the doctor I took him to see — what had happened. On two separate occasions, months apart, he asked me to remarry him.
For two years after the divorce, he continued to vacillate between detached abandonment and romantic courting, paranoia and altruism, confusion and some version of his astute self. A mix of fear, determination, and a lifelong mind-set as an endurance athlete pushed me from one day to the next. The instability and heartache — for him, for us — was exacting, but my commitment to “do the right thing” did not waver. At the center was my love for him. But it might also have been about the way I was raised, or my desire to mitigate the shame around the demise of a second marriage, or because any tangible action made me feel like a better person, like someone I’d read about in a romanticized caregiving story, for a few minutes.
Over time, however, his behavior worsened, and the cruelty and risks obliterated the hopeful moments. The continual yearning, rejoicing and mourning, a destructive cycle worse than death, demanded emotional distance. Otherwise, the illness would have taken all of us. And I knew he didn’t want that.
During and after E.’s diagnosis, I looked to my father, the person I trusted most, to guide me through this heart-rending maze. And he did, with tremendous aplomb and wisdom — until he couldn’t. He and I shared the typical distant closeness of fathers and daughters, strengthened by my absolute faith in his presence. When it looked like I might need to appear in court without an attorney, he prepared me. He helped me navigate other legal and ethical quandaries. Mostly, he remained calm and rational whenever I broke down crying. He was one of few people who could listen carefully and process complex information without trying to convince me that if I just talked to E. a certain way, or conducted myself differently, everything could be repaired. Dad didn’t try to change anything. A skilled adjudicator, he examined the facts and steered me toward the least dreadful of the terrible choices — a recurring theme throughout these years. I felt like a diver rising from extreme depths and darkness, unable to see the way up, at risk for blackout and decompression sickness. My father was the anchor line directing me to the surface, and I held onto him as if my life depended on it.
Then, a few years later, Dad began exhibiting symptoms and behaviors that were eerily familiar, including cognitive decline and paranoia, and something new: hallucinations. A former collegiate running back, he had always been nimble and preternaturally ageless. Signs also featured parkinsonism — his six-and-a-half-feet-tall frame stooped, an impressive stride turned slow and shuffling, his balance was compromised, his clear, booming voice quieted to a soft mumble.
These two beloved men once seemed invincible to me. Both had competed as intercollegiate athletes at Stanford and Yale, and maintained that same extraordinary level of fitness throughout their lives. They possessed a blend of intelligence and perseverance that allowed E. to achieve success in a career as a research and clinical oncologist and administrator, and my father, a Navy SEAL in Vietnam, to become an attorney and judge. Now both were battling dementia that ended their lives long before the finality, clarity, and grace of death.
This time, I was fairly sure I knew what was happening, especially after he gave me permission to speak with his primary-care physician, who agreed that Dad might have Lewy body dementia, the second most common cause of progressive dementia behind Alzheimer’s. The condition affects a person’s ability to think, reason, and process information. It also causes movement disorders, and is closely related to Parkinson’s disease. Common symptoms include visual hallucinations and sleep disturbances as well.
Subjects in which Dad possessed lifelong expertise now eluded him. Managing finances and comprehending time also became challenges. New fixations appeared in endless loops. Other times the coherent raconteur returned, responding with a pithy remark, a keen observation, or a well-timed joke before drifting back into a state of confusion.
But my awareness did not alleviate my distress. There was little to do but try to prevent disaster (eased slightly when Dad volunteered to stop driving and asked for help with finances) while bearing witness to the erosion of the person I loved, the person who was the foundation of my existence. I worked the phones, wrote emails, recruited help. Ultimately, I did the best I could, in my own flawed way, one day at a time.
About a year after I first addressed my concerns about Dad’s well-being with him and his wife, my stepmother, he told me he was going to surprise her at the airport, after a trip, with divorce papers. He was certain — erroneously — that she was having an affair with his best friend and former colleague.
Dad’s divorce obsession regained momentum later, when he claimed that his wife was acting aggressively toward him, a belief he repeated vehemently in phone calls to me. At one point, he left the house in his pajamas, clutching important papers and smoldering with distrust. As the latest crisis reached a pinnacle, more than two years after our initial discussion, the doctor instructed his wife to take Dad to the emergency room. From there, he was transferred to a psychiatric ward and then to a secure memory center with 24-hour supervisory care. He never came home.
Again I bathed in a mix of sorrow, fury, and helplessness.
At various points during these journeys with Dad and E., my previous unknowing insensitivity to others ricocheted back to me. I recalled the silent reaction of a friend whose husband’s brain cancer left him prone to fits of abusive behavior, when I told her that he “looked great!” Later, I apologized and acknowledged that I had not understood how painful it could be when someone essentially negates or dismisses our reality with a forced infusion of positivity, no matter how well-meaning. She said, “Now you can help others understand.” On another occasion, I spoke with a neighbor whose wife also had brain cancer. Did friends who inquired after his wife’s health ever ask about him, I wondered? “Yes,” he replied. “But they don’t understand my answers.” The next time I saw him, I stopped the car, stepped out, and hugged him. No questions. No conversation. Just a small gesture of compassion.
A few people accused me of divorcing my husband the minute he became ill. Such vicious gossip — especially when the opposite was true — baffled and devastated me. Others dismissed our circumstances, treating me as if I’d been through (yet another) divorce that was a manifestation of a failed marriage.
We never really know other people’s marriages and homes and circumstances and struggles the way we think we do.
Some people felt compelled to inform me that I wasn’t a caregiver because I didn’t face, as so many others must, daily feeding, bathing, and other aspects at the base of Maslow’s hierarchy of needs. Perhaps not, but I gave the men I loved the concern and care I could. I helped with safety, medical care, general health, and finances — up close and from afar — imperfectly. I always wanted to do more, as if the next assignment could reassemble the broken pieces and make the person well again.
Only when I figured out how to stop and do nothing did I experience the most consequential moments. One morning, when Dad could no longer walk or engage in conversation, I pushed him in a wheelchair beside the nearby bay. We paused and sat quietly together, inhaling the reassuring scent of salt water. When I reached for his hand, he sighed with gratitude. It was a sound I will never forget; everything faded behind that simple human touch.
He died the next day.
My last visit with E., shortly after my father’s death, was similar. Verbal communication was impossible. I sat with him, saying and doing little beyond showing him a few pictures and holding his hand. His thumb stroked my palm with a familiarity that replaced any last words we might have spoken.
The day we scattered Dad’s ashes at sea, E. died. I placed two flowers in the ocean.
In the time E. and I were together before and after the divorce, I often asked him, “What can I do? How can I help you?” Perhaps I wanted that checklist, something to accomplish or assuage my feelings of inadequacy and guilt.
He always replied, “Just love me.”
I wish I had understood sooner how much, yet how little, this requires.
No matter how many years pass, I’m fairly sure my stories will never be what people want to hear. But in their own messy way, they’re still love stories.
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