Love in the Time of Dementia

by Cynthia Stock

I took a picture of my husband, John, New Year’s Day 2025, his subtle grin captured by my iPhone. Our runt-of-the-litter cat, Bittle, wedged between his legs, looked content. The new sofa embraced both in a cushioned hug. My husband appeared healthy, his skin pink, his dark brown eyes focused in my direction. He resembled an older version of the man I fell in love with more than twenty-five years ago. It’s hard to believe every day I awaken, uncertain of the person who will be present in his body. All seems right with the world until John’s affect flattens and he looks through me, not at me, and it feels like we’ve never met. 

Our relationship began one not so busy day in the Critical Care unit where I worked as a nurse. Our unit secretary hollered “You have a call on line 2.” The only people who called me were doctors, patients’ family members, or my son. As a single mom, I mandated periodic check-ins when my son was home alone. And, as a single mom, I rushed to the phone prepared for the worst. It was not my son.

“I’m sure you don’t remember me,” a man’s voice said.

Wrong. Tone low, a bit gravelly. I recognized the voice from the days I took care of the man’s son over a period of weeks, nearly three months earlier. An older man. A polio survivor with an uneven gait. A man who quietly paced around his son’s bed. A man with whom I bonded quickly. He tagged me as his go-to resource when he had questions. I filtered the information overload provided by the doctors and helped him navigate the tumultuous course of his son’s care and condition. As a nurse, certain connections felt like family.

“Of course I remember you. You’re John. How are you?” The last time I’d seen John was at his son’s viewing. I’d lost many patients during my decades long career. I’d attended only two viewings and one funeral. For the first time, John’s son looked peaceful, but it was a gut-punch reminder that even the best treatments administered with the greatest hopes could not always heal.

“I’m getting ready to retire and move to South Dakota. I’d like to take you out to dinner before I leave.”

I’d been single for ten years, pinballing among short-term relationships. Time taught me about boundaries. I didn’t want the proverbial walk down memory lane to retraumatize both of us with the reality of medicine’s inability to save lives. Nor did I want to spend time with someone who lacked a moral compass. “You’re not married, are you?” I blurted. Despite all the times we’d talked, it was only about his son, the plan of care, the presence or absence of hope.

Over a carafe of wine at The Olive Garden, we learned about each other, who we were outside the roles of nurse and father of a patient. Casual dress. Low key noise. Laughter. Little mention of the son or his hospitalization.

We were too old and sensible for a whirlwind courtship. I was forty-six. John was ten years older. We simmered on low heat. We both had been married. 

After our dinner, a date at Braum’s, and a picnic at a park, John visited South Dakota for extended fishing trips, but he never left Texas for good.

Two years of courtship consisted of concerts, road trips, learning to navigate the boundaries established from living alone for more than a few years, moving in together, redefining the meaning of family for me, my son, and John. Marriage: more concerts, theater, dinners out, home maintenance, health scares, a hormonal angst-filled teen, devising new ways to make a mundane life exciting. We lived a normal, everyday existence.

‘All the testing in the world, a pithy diagnosis, all the general recommendations, nothing teaches you how to keep loving your partner as he slips away.’

I wasn’t prepared for the day the ordinary devolved into chaos. I came home from lunch with a friend. John’s car was gone. We usually communicated our plans for the day. I disarmed the security system. Good. He’d remembered to set it. The cats greeted me. No note. I texted: “Where are you?” 

U2’s Vertigo, my ringtone, echoed through the kitchen. “Where are you?” I repeated.

“I’ve been hacked. I’m on the way home. I’ve been scammed.”

Within five minutes, the back door opened with its hydraulic whish. In walked John, looking haggard and defeated. His face was pale, taut. His jaw clenched.

“I paid $13,000 to some guy on the phone. When he asked for more before he’d release my computer, I knew it was a scam,” John said. 

John, a good man, a kind man, a man of faith. His face bore the look of someone who had been violated in a most egregious way, home invasion via computer.

  The amount of money John paid in ransom to “secure” his computer stunned me. Why hadn’t the bank questioned a sizeable cash withdrawal? Where was John’s common sense as the clerk counted the money and handed it to him? His eyes looked around the kitchen without seeing. He seemed lost in this familiar place, our home. 

I wanted to fix things, to take care of my husband. I’d resuscitated hearts. How could I resuscitate his spirit? A chunk of his life force had been stolen along with the money.

“Why didn’t you call me?”

  “I didn’t want to disturb your lunch,” he said. 

My heart told me to grab denial, the great problem solver, and hold on, to pretend things like this never happen again, to forget the day. My scientific and sensible brain, so necessary in my professional life, insisted another bad decision like this one could up end our lives. I sat on the sofa and sorted fact from emotions. A large amount of money was gone. We would survive. I wasn’t sure I could trust my husband’s decision making. Our lives had already been upended.

“I’m going to take a nap,” John said.

“I’m going to the bank. I think I should separate our accounts and block your access.”

“I think you’re right,” he said as he lumbered to the bedroom. 

Intuition told me to give him space.

John and I had always shared everything. I explained the situation to the bank teller. Tears threatened. My voice quivered. I was a villain committing a betrayal. The account separation, done with one request and a few clicks of a keyboard, felt like I had excised a vital organ. I wept in the entryway of the bank as I left.

We visited a neurologist. John subjected himself to three hours of cognitive testing. I was interrogated like a witness to a crime. The PhD administering the test summed up the results. Yes. The tests showed cognitive decline. The doctor recommended that John no longer drive.

All the testing in the world, a pithy diagnosis, all the general recommendations, nothing teaches you how to keep loving your partner as he slips away.

Hindsight taunted me. I recalled little things I’d taken for granted. His trouble with what I knew as “word retrieval.”  The day he left his cell phone on a stack of fertilizer at Lowe’s. Days when his voice changed and his speech seemed garbled. Days of prolonged silence. How easy it was to attribute these things to aging. How easy it was to pack them away and ignore them because I did not want to recognize a new reality.

My real “Aha” moment came the first day I felt threatened by John. Neither of us was computer literate. John fought daily with passwords and account site accesses. I came up behind him at his desk. He hunched, like Quasimodo, over his keyboard. I offered to help. He bent his arms to his chest and clenched his fists. His face turned from pink to ruddy. He spun around in his computer chair and batted me away with tremulous, open palms. “Leave me alone. Let me do this.” He shook with rage. The way his hands jittered, I could easily see one swinging through the air, connecting with my face.

From then on, I learned cues that predicted the temperament of the day. On good days, he looked familiar. On unpredictable days, his voice dropped an octave or two, his eyes glazed over, his skin sagged a little bit more than usual. Everything I said evoked an adversarial response. I mastered walking on eggshells. 

John’s outbursts of anger erupted every few weeks. His short-term memory disintegrated. Sometimes I answered the same question three times in ten minutes. Doctors’ appointments. How much a health premium increased. People’s names. He passed through some days as wooden as a mannequin. No interest in food. Television. Me. Those days gut-punched me and made me face the truth. Little by little my husband was leaving me.

I clung to past pleasures, the lush warmth of his lips the first time we kissed. The adolescent laughter echoing as we ran down the hall to the bedroom. The satisfaction of those nights when we sat in front of the fireplace and appreciated how lucky we were when we were middle-aged and passionate.

I started to see a therapist to keep myself from being pulled under by the quicksand of my new state of being. She held on to me through the muck and kept me breathing. I realized I was taking a tortuous journey with grief. First it was John’s son. Now it was John. Once I passed through the stage of denial, anger stymied me. Hadn’t John suffered enough? A polio survivor. Loss of a child. The usual health crises of aging. Hadn’t I worked hard enough to deserve a rest? Hypervigilance and stress dominated my days. Freedom? Relaxation? I stood sentinel every waking moment. Just a few years into retirement I found myself in a life I never expected.

A turning point came when I challenged myself to remember the things I loved about John, to forget the repetitive questions and forgotten details, to work at engaging him in every day, every moment, to reach out to him for the physical comfort I desperately needed. It wasn’t sex; it was a full body hug, a kiss that was more than a peck on the cheek. My anger blinded me to needs that could still be met. It focused my attention on what I was losing, not on what I still had.

One morning before our daily coffee and chit-chat on the sofa, I told him I needed a hug. The house was cold. When we embraced, I felt the curve of his back through his fleece jacket, felt how his body had diminished with age. The closeness was all that mattered. 

“We need to do that more often,” he said. 

I watched John with the cats. He brushed them both at least once a day. He spoke to them, something he’d never done with any of our other pets. When we clipped their nails, he the stabilizer, I the clipper, he calmed them with his low-toned reassurance. However, I became a helicopter cat-mom on his bad days. Even the best cats wear on the nerves. When he caught one cat scratching the ottoman, he jabbed his walking cane at her. He didn’t hit her, but the move created a possibility. No way, I told myself. Still, I watched.

I was most discouraged over the holidays. Then John surprised me with a portable CD player, something I wanted so I wouldn’t have to dump my collection. He found a t-shirt that said “I love cats and coffee and maybe three people.” Perfect gifts. He still knew me.

Winter weather blew into town with a rigorous wind. Our cable company had secured their cable to our siding. Thirty-five mile an hour gusts pulled the siding and the cable away from the house. The wind chill made the air feel like 12 degrees. I remembered the younger problem-solving team we’d always been. I grabbed a three-step ladder; he got the duct tape. The wind nearly knocked us over.  A 73- and 83-year-old made patchy home repairs in an artic front, one wearing a foot brace, one a leg brace and walking with a cane. Always a team. That was how we worked. We sat on the sofa warming our hands and reveled in how one small accomplishment brought us back from the abyss and re-established our connection.

The context of our lives has changed. I watch him when his finger hovers over a link on his phone I suspect isn’t safe to open, ready to intervene. I drive him anywhere that is more than a few miles from home. I urge him not to do things that might endanger his health like climbing ladders or lifting too much. There are angst-filled moments, times when I want to test him by asking him to call me by my name rather than “Hon.” I need to be reassured he knows me, that our “good morning” and “good night” kisses are not perfunctory rituals, that he knows I am the woman he chose, that he remembers I chose him. When he has his “stranger” days, I give him space without feeling the guilt of abandonment. I stay close.

We hold hands watching TV. We talk politics and future plans. I work-out six days a week and write as often. I do not leave the house without kissing him good-bye. I don’t go to sleep without kissing him goodnight. 

I prepared myself for difficult days. I thought I was prepared. Life settled down.

Until.

John balanced his checkbook, did basic home maintenance, cared for himself independently. We agreed it was safe for John to drive within a five-mile radius of home. No drives in heavy traffic. No drives to unfamiliar places. “Good plan,” I told myself.

Driving home from the gym on a day I knew John had an appointment with a dentist whose office was less than two blocks from our old house. John’s light blue Prius C sped across three lanes, cut in front of me, and did a U-turn to head in the direction of the dentist’s office. I slammed on my horn as I would have with any reckless driver. I thought he’d be safe driving short distances. I chided myself for my naivete.  His car slid into the gap in the median and inched into a turn. I honked again, no animus this time, just to let him know I saw him. I was close enough to see the set of his jaw. He was lost.

Funny how the “what ifs?” come to fruition. At the gym, where I worked so hard to keep my brain and body healthy, the question popped into my head, “Will he know the way?” When I got home, I called the dentist’s office to see if John ever arrived. He had not.

Waiting, the purest form of torture for a person like me, set me to pacing the house, reading the news on my phone, checking my pulse for irregularities. I redialed the office.

“Is John there yet?”

“No, he called and said he’d reschedule.” 

I called him. “Where are you?”

“On Miller Rd. I didn’t get my teeth cleaned.”

‘Always a team. That was how we worked. We sat on the sofa warming our hands and reveled in how one small accomplishment brought us back from the abyss and re-established our connection.’

The rest of his day would be one of self-flagellation, punishing himself for a failure over which he had no control. Depression. Lethargy. Questioning his reason for being. 

The door hissed a sigh and opened. John shuffled into the kitchen. We dodged each other, navigating our way through the kitchen to make lunch. We ate in silence.

Finally, John spoke.

“I couldn’t remember where it was, and then my mind just stopped working.” Anguish deepened the lines in his face, the pain in his eyes.

“I can’t imagine how frightening and frustrating that must have been. Remember how close it was to our old house?” I read somewhere a cue, like a Post-it note, helped people remember.

He mumbled. His eyes looking down into his bowl of cereal. What did he see?

“How long are you going to beat yourself up about this? This is why we’re going back to the neurologist next month.” I managed gentle reassurance by turning down my volume and using a tone of voice I used with patients I cared for who needed to know they would live another day, a voice that didn’t promise anything, a voice that inspired hope. I wanted John to know we’d get through this together.

“Give me a day. I’m going to take a nap,” John said. He labored his way to his bed, every step an effort, even with his cane in hand.

John perked up the next day, as promised. 

On good days, my old John is present. He surprises me with a bag of truffles, a garden decoration, a bluebird with windmills for wings. We share coffee in the morning and sort the problems of the world. I allow myself the pretense of normalcy.

On bad days, John’s body quakes with anger at some unpredictable trigger. He spews vitriol. I buffer it, knowing he won’t remember what he said the next day. I busy myself, cautious, waiting, giving him wide berth. I long for the old John. I peek at him napping, Bittle nestled against his hip. And, there he is.