The long goodbye: Alzheimer’s claims one loved one … then another

Mom, center, at perhaps the last joyous occasion of her life — preparing to enter the stadium for my nephew Jacob's high school graduation in late spring 2017. My wife, Debi, is to her left and Dad to her right. In a few short weeks, her Alzheimer's symptoms would overcome her — and us. Mom died that July.

All I really wanted to do was play Donkey Kong.

One Saturday morning in the early 1980s, Mom dropped me off to spend the night at the home of my friend Mark Grzegorek. We had all sorts of plans. We would sort through our baseball cards, play whiffle ball in his backyard, and maybe watch a horror movie that night. But the first order of business for these 12-year-olds was to filch a handful of quarters from the change jar that Griz’s mother kept in a kitchen cabinet. Then, it was off to the convenience store down the road to play video games.

Our pockets jangling, Griz left me in the kitchen while he went back to his bedroom to retrieve his hat. Then the phone rang. Griz’s mother, Miss Daisy, answered. The call was … for me?

That’s weird, I thought, as she handed me the receiver, starting a conversation that would continue over four decades and shape my family’s life in ways small and large.

“Jeff, it’s Mom. I just wanted to let you know that when you come home tomorrow, I probably won’t be here,” she said.

I could tell right away something was wrong.

“I need to go to Kentucky,” she continued. “Papaw is in the hospital.”

“What … what happened? Is he OK?”

“We’re not sure. He has been having some problems lately. It might be a stroke. They’ll know more after they give him a CAT scan.”

My chest fluttered. My eyes began to burn. I tried to blink back tears. Oh, no, I thought. I can’t start bawling in front of Griz.

Suddenly preoccupied with my battle against embarrassment, the rest of the conversation dissolved into static. I remember only that we decided I could stay at Griz’s house as planned and that someone would pick me up the next afternoon.

I don’t recall exactly how long it took to rule out the doctors’ initial speculation, but that CAT scan — I had to learn what that was — revealed no signs of a stroke. Instead, Papaw’s physicians determined over the next few days that he was suffering from the early stages of Alzheimer’s Disease.

I did not know what that was, either.

Later, his physicians would tack Parkinson’s onto the diagnosis. I knew what that was and that it was not good — there was a picture in my health-class textbook of a feeble, stoop-shouldered old man standing with a forward lean, the tell-tale posture of a Parkinson’s patient.

But Alzheimer’s? I had no idea what that was. No one in the family seemed to know much about it, either.

We were in for one helluva mournful education.

Papaw’s dementia first manifested itself in short-term memory loss but progressed rapidly into confusion, anxiety and nightmares. At times, he seemed delusional and was given to wandering out of the house for no apparent reason, often at night, sometimes with bare feet. Other times, he seemed transported to his past, usually to reprise traumatic events. Once, he woke up in the middle of the night, thrashing wildly and convinced he was trapped in his burning Army barracks, an event my Uncle Kenny believes Papaw actually experienced while in the service in the 1940s.

When Papaw was diagnosed, he had only recently retired from his job as a custodian at the Kentucky State Police station in Morehead. He and Granny looked forward to travels that never came to be. Instead, Granny struggled to care for her husband, with few of the resources like memory care and support groups that exist today.

Even had such services been available, they would not likely have been accessible to my grandparents. Their farm was at least a half-hour drive from town, over narrow mountain roads that could be quite treacherous during winter. Although my Uncle Kenny lived only a few hundred yards down the road in a house built at the front of the property in the 1970s, he worked during the day. So did his wife, Ernestine. The next-closest neighbor was out of sight and sound, more than a quarter mile down a gravel road.

Moreover, it was a terrible place to be if you needed help to arrive quickly.

So Papaw spent his final years in a nursing home, while Granny stayed alone in the farmhouse her father-in-law had purchased more than 60 years earlier. By that time, there was no hay to stack, no chickens to feed and no vegetables to can. Some years, Kenny put out a fall tobacco crop, but other years he simply did not have the time. It was a long drive to work and a long drive to his children’s school activities.

A painful concession was in order.

That working farm was no longer working for them. A few years after Papaw went to a nursing home, Granny went into a senior-living community, sold the old homeplace and split the proceeds among her children.

Papaw was in the ground by then, buried in 1988 in the Hall Family Cemetery just down the gravel road. To my shame, I had not seen him in several years when he passed. I did not like the idea of visiting a nursing home to see a man who did not recognize me and who I could barely recognize. It was selfish, but I wanted to hermetically seal my memories of a kindhearted, olive-skinned man who could dust himself off and walk away even after a mule dragged him over a cliff. I was simply too weak a person to visit the ashen, stoop-shouldered husk in the pictures from the nursing home.

This photo makes me so damn sad — Papaw and Granny during a visit to Papaw's nursing home.

Papaw and Granny didn't have much money, but soon after I was adopted, they bought me this pony.

My cousin Wayne (left) and I sit in Papaw's lap.

Papaw and I hoist the channel catfish he helped me catch from one of his ponds.

Papaw plays with me during my first visit to their home after my adoption in 1969.

Mom was more faithful in her visitations — at least, as faithful as she could be from 500 miles away — but I think she also was haunted by the visions that disturbed me, albeit for a different reason. I was scared Papaw’s Alzheimer’s would blot out the good times I had experienced with him; Mom was scared Papaw’s ailment would become her own and blot out every good time to come.

In reality, the disease was not necessarily the fait accompli Mom seemed to imagine. It is true your risk of developing Alzheimer's is somewhat higher if a first-degree relative — a parent or sibling — has the disease. However, it is also true that less than 1% of cases are brought on solely by specific, inherited gene mutations. Researchers believe Alzheimer's is more commonly caused by a combination of genetic, lifestyle and environmental factors that affect the brain over time.

Nonetheless, whenever Mom misplaced her car keys or forgot an old classmate’s name, her foreboding gained a little more mass and a little more velocity. This anxiety meant she suffered from Alzheimer’s even before she had it.

I should not overstate that case, though. I do not mean to say that she turned glum or sullen. But in quiet moments, she worried what the disease might do to her and her family, and that her plans to stave off this great terror would be frustrated.

She tried, for example, to get an insurance policy to cover long-term care and thereby spare the family financial carnage if she got sick. However, she was denied coverage, in part because of her family history of Alzheimer’s. Never mind that, at that point, this history consisted of a grand total of one person.

Mom regarded the rejection as yet another confirmation of her destiny and another reason to fret quietly over its implications.

Then, after two decades of finding portent in benign memory lapses, Mom started putting laundry in the oven.

She also forgot how to cook recipes she’d been making for years. And where to put the silverware when she emptied the dishwasher. And how to balance the checkbook, when to take her medicine and why she had walked into the next room.

At first, she tried to conceal her deterioration, though that was all but impossible to keep from Dad. By then, he had joined her in retirement and was almost constantly around her. She didn’t put up much of a fuss when he told her she should not be driving anymore — she was increasingly uncomfortable with any task that required her to think quickly or follow instructions. But Mom swore him to secrecy — Jeff, Jen and Jacob must not know.

That did not last long, however. Jen and Jacob were around too much to miss the signs of her cognitive decline. And even from a distance, I could tell she was growing ever less enthusiastic about leaving the house or conversing with acquaintances for fear of saying something nonsensical — or worse, being unable to say anything whatsoever.

Nonetheless, we pretended not to notice these changes when we were around her.

In retrospect, it’s difficult to know whether it was right to let Mom think her ruse was working. Perhaps open confrontation would have encouraged both her and Dad to seek professional help outside the home sooner. On the other hand, this might have taken away Mom’s last semblance of control over what she valued most — her family’s happiness. And she gained the added reassurance of knowing that, if she were still capable of fooling us, she still had some of her wits about her.

So we remained careful to indulge her subterfuge to her face, even as we openly acknowledged her declining state to each other.

One of the significant concessions to her illness was selling the roomy house Mom and Dad had purchased about the time my sister got pregnant. Mom had taken a tumble down the stairs in the late 2000s, and we all chalked it up to klutziness. Thinking back, though, this might well have been an early sign of her as-yet-undiagnosed Parkinson’s Disease. Her symptoms grew worse over the next several years — a shuffling, stiff-armed gait; slight hand tremors; soft, mumbling speech; blank facial expressions.

Whatever the cause of her fall, her recovery was slow, and the thought of Mom trudging up and down the stairs several times a day to tidy up a 3,000-square-foot house seemed foolish. A lot of good memories dwelled in that home. Pool parties. Big family gatherings. Jacob, was practically raised in that house. But the two-acre lawn was more than Dad wanted to maintain, too.

So Mom and Dad downsized and moved to a single-story home a few miles away on New Year’s Eve 2013. Even now, I do not know quite what to make of the four years my mother spent in that house. It seems like one long game of limbo.

We still shared many happy times, and I even lived there part-time for a while. My last job in the newspaper industry was as a regional editor for McClatchy, and my duties put me in the newsroom in the Lowcountry on Mondays and Fridays, and in Columbia each Tuesday through Thursday. So I spent two nights each week with Mom and Dad, rather than commuting back and forth to Beaufort. This proved a blessing. In two years, I spent more time with them than I had since leaving home more than two decades earlier.

But I also saw first-hand the strain Mom’s health put on my parents’ lives.

Yes, Mom still remembered everyone’s name She still invited the cat to snuggle in her lap in the evenings. She still liked to watch Jeopardy and her recorded soap operas after supper. But she had long since ceased to read or paint, shied from long conversations, and shuffled about ever more stiffly and slowly. She no longer left the house without Dad and sometimes could not visit the bathroom without him, either.

Moving to a new address mitigated Mom’s condition. Still, we did not have her formally diagnosed with Alzheimer’s and Parkinson’s until 2015, when the decline we tacitly acknowledged began to steepen undeniably. In the interim, more of the tasks she once performed shifted to Dad, but we did little else to tackle Mom’s cognitive impairment head-on.

And in the end, that impairment got away from us entirely.

Jacob’s high school graduation in May 2017 was the last of the good times. He was a good student with a good group of friends and a firm faith. He was to enroll in Clemson University’s engineering school in the fall, and no one was more proud of him than the woman who played library and train with him, and rocked him to sleep with her off-key rendition of “Somewhere Over the Rainbow.”

The graduation ceremony was held in the Lugoff-Elgin High School football stadium on a bright, clear day. Dressed in red capri pants and a red-striped blouse with the sleeves rolled up, Mom looked as cheerful as she seemed to feel. That evening, we went to a Japanese hibachi restaurant. She joked with the chef of her own volition — remarkable because, by that point, she seldom volunteered comments to people she didn’t know. That said, once the food started hitting our plates, Mom paid almost no attention to the onion-chopping, shrimp-flipping, pyrotechnic antics of the itamae — she was busy packing away the most food she had eaten during a single meal in months.

All seemed well.

Two weeks later, Debi and I took a group of her high school students to Ecuador and the Galapagos Islands. I took several thousand frames and hours of video, with plans to post lots of content on my website when we got home, as I had during a similar student trip to China in 2010. However, when we arrived home, we had to abandon our plans to document the Darwinian wonders we experienced in the middle of the Pacific Ocean.

Mom’s condition had taken a sudden and egregious turn.

Basically, she quit sleeping. And I do not mean that she had a difficult time falling asleep or that she tossed and turned in bed. I mean she was up and active, pacing the floor for hours on end, rarely sleeping for more than an hour at a stretch. It went on like that for days.

That meant Dad was trapped in a somnambulant hell, too, as Mom grew less and less coherent and his own mind became deeply muddled by lack of sleep.

“I don’t know what I’m going to do. I can’t help her anymore,” he told me in a phone call soon after Debi and I returned to the States. He was on the verge of tears — on the verge of a breakdown, really.

Jen tried her best to help, juggling her work schedule so that Dad did not face the impossible task of tending to Mom around the clock. But she had to work. So did I.

The preceding October, I had left the newspaper business and took a job as the communications director for the 14th Circuit Solicitor’s Office, the criminal prosecutor for my area of South Carolina. I could come on the weekends to spell Dad, but I had been at my new job less than six months and had just taken two weeks of vacation that, technically, I had not yet accrued. I was in no position to be an office no-show.

Debi proved to be the saving grace. With summer break from her teaching job and no firm obligations, she was off to Lugoff without hesitation and without anyone asking her to come.

She arrived at a house in chaos. Mom maundered manically, while Dad frantically followed in an attempt to corral her.

But with Debi’s arrival, Dad could at least sleep for more than one or two hours at a time. And when he was awake, she helped him figure out options for Mom’s long-term care, ranging from nursing homes to in-house medical assistance.

Whatever Dad chose, it was going to be expensive. But it seemed more evident than ever that the expense would be unavoidable. Mom was not getting better. In fact, she was showing many of the advanced signs of dementia.

Among the most notable changes were her shifting moods and personality.

“You’re a good person,” she said to Debi in a contemptuous tone as she wandered the house looking for better company, “but I want my Glenn and I want my Jennifer and I want my Jacob.”

I got my first look at Mom’s severe turn a few days later. I had not seen her since leaving for the Galapagos. She seemed more frail and wispy to me, yet more animated. Expression occasionally returned to her face, but only to convey alien emotions.

“Fuck!” she sputtered as I stood with her in the kitchen that first Saturday afternoon. Her brow was furrowed in anger, although I knew not why. I should have been horrified, but I burst out laughing at the absurdity of the foul language from her pristine mouth. In healthier times, Mom might let slip a “damn” or a “hell,” but she’d blush while doing it.

“Whoa, whoa! Take it easy there, Mom,” I said, still amused.

She cut her eyes at me and scowled for a moment. It was the meanest look she had ever given me. But then her face softened, and she seemed to lose her train of thought. Whatever angered her had passed, taking all expression with it.

The blank stare returned.

Mom was prone to other types of outbursts, too. Later that evening, she sprang from the couch, where she had been sleeping for about an hour, walked straight past Dad, and stood in front of the recliner where I had been dozing. She began sparring with an invisible opponent, rearing back and thrashing her hands downward, her hands cupped as if to make a fist.

Not a good fist. But I’d never seen Mom make a fist at all.

Alzheimer’s had not wrung all the sweetness from her, though.

Mom had probably walked as much in the preceding two weeks as she had in the past two years. If it was your turn to keep an eye on her, the goal was to lead her somewhere she wouldn’t hurt herself when the wandering started. All the better if you could get her to sit down for a bit.

Late one Saturday afternoon, I led her outside to a backyard area Dad prepared just for her. He installed a porch swing and surrounded it with hostas, azaleas and other flowering plants, including a hydrangea Debi and I gave her one year for Mother’s Day. Mom and I sat there and rocked for a few minutes. I held her hand as golden hour arrived and pine shadows yawned across the yard.

“I love you, Mom," I told her as I leaned over in the swing to pull her close to me.

“I love you, too, my boy.”

I was thinking how raspy and weak her voice was becoming when a ruby-throated hummingbird came darting from around the corner of the house. It flew right toward us and stopped suddenly. For a moment, it suspended before us, as if hung from an invisible wire, its iridescent throat shimmering brilliantly against the slanting sun. Then, it resumed its flight just as suddenly, buzzing over our heads.

Mom gasped in delight as her grip on my hand tightened. My heart fluttered to match the bird’s wingbeats. All seemed normal again for a moment as Mom found wonderment in this tiny creature racing to beat the sunset.

Two hours later, though, she was wearing a groove in the floor again.

Mom still had not had any real sleep for nearly three weeks, and her hallucinations were intensifying. I had to leave on Sunday evening, but Debi stayed a few more days to help out. Jen managed to keep Mom still and in bed through most of the first night after my departure, but Dad and Debi would be alone the next night. They decided that if they could not settle Mom as Jen had the night before, they would call for an ambulance and try to get her admitted to the hospital.

And long after the sun was down, Mom was still up, wandering the house yet again.

“Do you want me to call?” Debi asked Dad.

He could not get the words out. He just shook his head yes.

“Yeah, let’s do it!” Mom interrupted in a brief fit of cognizance.

Debi made the call, and the ambulance came to take Mom away. She never returned to that house.

Jen had to do a little cajoling with her associates at the hospital to get Mom a bed. Technically, the hospital could not admit her just to tend to her Alzheimer’s symptoms. Jen told them we suspected she might have a urinary tract infection, which was not untrue but which also seemed unlikely to be the cause of her incessant pacing.

Nonetheless, doctors agreed to hold Mom for observation, and they heavily sedated her. The plan was to begin backing off the sedatives once doctors knew whether she had an infection, and bring her back to consciousness.

After a day or two, doctors indeed confirmed there was no UTI and discharged Mom. But she was still unconscious. She did not seem to want to wake up.

And we were still unsure we could care for her at home. Well, actually, we knew that we could not.

So Dad moved her to a healthcare facility in nearby Blythewood, about 25 minutes from the house. This level of care was going to cost Dad several thousand dollars a month. Still, it had a rehabilitative wing, where therapists could help Mom regain as much cognition and function as possible when she awakened. Once adjusted, she could move into an available room in the facility’s long-term, skilled-nursing wing ... which would cost several thousand more a month.

Of course, if Mom responded well to rehabilitation and put her sleepless wanderings behind her, we could always bring her home again. But at that point, no one believed that would happen.

So although it felt more like a surrender than a solution, Jen went with Dad to the home one Friday morning to sign the check and admission papers that would lock in a monthly rate for Mom’s care. Then, they walked down to her room for a visit.

Mom was asleep, as she had been almost constantly since her admission to the hospital more than a week ago. Dad and Jen sat on the bed, took turns holding her hand and whispered to her and about her. But within a few minutes, Jen noticed Mom’s breathing getting increasingly shallow. From her nights working in an acute-care hospital wing, she knew what this meant.

Then with one last gasp, Mom was gone.

Jen called me a few minutes later, as I was commuting between satellite offices at my new job. The news squeezed my chest like a vice. Tear-blurred and punch-drunk, I pulled to the shoulder of Interstate 95. We knew Mom was bad off, but because she still knew our names before she was drugged into oblivion, our biggest worry was that she would linger for months or years in a nursing home. It did not occur to me death was imminent.

Parked on the roadside, I stared at my flashing hazard lights. How odd it was to have tangled thoughts Mom could not help me untwist and searing pains she could not soothe.

I sat there several minutes before my eyes were clear enough to slip the transmission back into drive. And when I did, I zoomed past the exit for my office and barelled on toward Lugoff instead.

During that bittersweet drive to see Mom one last time, I lingered on the fortunate fact that her yearning to be a mother had made me her son. I was as grateful as I was grieved.

I knew I owed her a eulogy like the one she gave her mother. Little did I know that in the act of fulfilling that obligation to the only mother I had ever known, I would discover a new obligation to the mother I had never met.

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One of my favorite pictures from one of my favorite days — Dad and Mom seated together during a 50th anniversary party Jen, Debi and I threw for them near Morehead, Ky. It was Mom's last trip to her hometown.