Alzheimer’s Disease is like mental cancer. It eats away inside you insidiously, slowly destroying you before anyone knows it is even there. It oozes in like a septic tide, consuming thoughts, memory, and personality like real cancer takes over internal organs. In the early days it is hard to tell where personal quirks end, and Alzheimer’s begins, but in the end one looks for anything untouched by the sickness.
One of the frightening things about Alzheimer’s is how the first harbingers of the disease make their appearance in the most benign and mundane events. Things we might laugh at as silly mistakes are really signs of something much worse than we imagine. When Alzheimer’s occurs where there is no family history, people look back at events that were warning signs, and shake their heads, thinking, “If only we had known what that meant.” In families where Alzheimer’s has left a mark down through the generations there can develop an almost mania of examining family and self as every little mistake and personality quirk is put to the question of “Is that Alzheimer’s?” What are natural human failures, and what are grim portents of a terrible future fast approaching? The question becomes fraught with weight. For family, the sentence of disease is a sentence to watching as someone you love is lost to grinding humiliation and helplessness. For the victim, it is going mad, and knowing it. It is pain—a mental and emotional pain like any physical torment as what you have is torn from you, one shred at a time, and replaced with confusion.
My Grandfather was born December 31st, 1927. Raised during the Great Depression as a middle child of ten, he was a country man, and a quiet man, given the melancholy. Short and slim to the point of being scrawny, he worked hard, smoked cigarettes, and drank coffee. He raised a family of six children with his wife, held a number of respectable jobs through the course of his life, and retired early from IBM. He never thought he amounted to much, and never asked for much from life. He saw his share of trials in life, but never guessed that in the last years of his life he would face the worst. He would face losing his mind, one bit at a time.
When did it start? I think all of us have asked that question. Maybe the answer is “At the very beginning” the seed of sickness sown in DNA, growing through childhood and adulthood like some hidden monster, until it couldn’t escape notice anymore. That is speculation. But there is another question that is not speculation: When did we notice? When did it really start effecting his life? When did we get the first glimmers that something was wrong, even terribly wrong?
The realization was progressive The signs were at first excused, denied, or minimized. Grandpa was getting old. Old people were forgetful. They made mistakes. I remember one incident that occurred years before anyone realized Grandpa had Alzheimer’s. It surely wasn’t the first sign, but it was one that lodged in my memory, an occurrence remembered, and reflected upon, years later.
At the time, we all laughed, even Grandpa, though he was sheepish with embarrassment. It was funny. At a birthday party, Grandma told the story on Grandpa.
“We were in a gas station convenience store,” Grandma said, almost breaking down in laughter before she could get finish. “We were picking up a few things. Pa takes them to the check-out girl to have them rung up. And she says to him, ‘Do you have gas, sir?’”
Grandma started laughing and had to regain control of herself before continuing.
“And he looked at her completely serious and put a hand to his stomach and said, ‘No, not right now. But sometimes I do after supper.’”
We all had a good laugh at Grandpa’s mistake in the cashier’s meaning. Afterward, a few people may have privately wondered if it was a sign that Grandpa wasn’t quite so sharp as he used to be—but in the end, so what? It was a little mistake. Embarrassing, yes, but he was in his seventies and mental slowness and decline were to be expected.
But now, looking back with the clarity of hindsight, I can see so well what that mistake revealed. An Alzheimer’s patient has difficulty placing context. To a normal healthy person, the question, “Do you have gas?” asked by a complete stranger in a gas station, would be naturally and easily understood as a question about the purchase of fuel. The fact that the location was a gas station, and that it is socially not proper for a stranger to inquire about our intestinal activity, makes the context clear. But for someone suffering with Alzheimer’s, context (and an understanding of what is socially appropriate) is increasingly lost. Removed from any context, the question, “Do you have gas?” becomes an inquiry about one’s personal health.
Of Grandpa’s older siblings that survived to advanced age, both of his older sisters suffered from dementia, and both his older brothers were of sound mind. Neither of the sisters were clinically diagnosed with Alzheimer’s, but dementia was clearly a significant possibility in the family. We did watch for such signs in Grandpa, and as the “gas story” began to grow into a succeeding string of incidents over the years it became clear to the attentive among us that Grandpa was headed toward some form of dementia—if he lived long enough. But both his sisters had managed well into their eighties before becoming severely affected, and Grandpa was still in his seventies. He had years before it would become an issue, we figured, and he could die of something else before the dementia became a problem. Certainly we all hoped the dementia would be slow, and ultimately of no account.
In the fall of 2003 my younger brother Arlan moved in with Grandma and Grandpa so that he could be closer to the college he was attending. At that point we began to get clearer first hand stories of what went on with Grandpa. During Arlan’s early time at college the stories were of little oddities and strangeness which only confirmed that Grandpa no longer was what he had been. But those little signs began to grow into something more.
At first, the incidents were more frustrating than ominous. Grandpa disassembled the kitchen faucet to fix a drip, and then couldn’t put it back together. Driving out to social engagements, he would suddenly take a turn onto a different road, which no one else thought was the way to go. There would be an argument about why this way had been taken, sometimes just with the stubborn insistence that, “This was the way to go.” Eventually they would get to the destination. Maybe Grandpa had known what he was doing. But, more likely, he had become confused, or followed a strange unexplainable impulse.
Things began to grow worse. Grandpa was involved in a car accident, pulling out in front of a vehicle he didn’t see. Then, on a very normal trip back from picking up his car from the repair shop, Arlan observed Grandpa in the other vehicle, driving in a highly irregular fashion, quickly switching lanes and taking inexplicably turns down side streets. After disappearing off into the unknown he eventually returned home, uninjured–but with no explanation for what he had done, or why.
It was indisputable that it was no longer safe for Grandpa to be driving. He didn’t want to give up the right to drive. He hated, and perhaps even feared, the act of driving–but giving up that symbol of competence and independence was something he was not willing to part with. Mercifully, he became increasingly willing to allowed someone else to drive him everywhere, and then outside events intervened and kept him from driving. When Grandma purchased a new car Grandpa insisted on checking it out, but on climbing inside he found himself confused, unable to comprehend how the new car worked. A little change, a little different look, and everything was entirely different and foreign. Grandpa could no longer drive.
He continued to grow worse. He began to act strangely. He intermittently failed to recognize a grandchild here or there at family gatherings. He wanted to go home shortly after arriving. Grandpa began to agitate, even at home, and follow Grandma around, hounding her. He sometimes spent the night on the couch. He began to have trouble remembering how to use the TV remote, and sometimes confusing it with the telephone. He began to forget how to turn on lights and turn off faucets. He forgot where he was going, what he was doing, and what he wanted. He made odd requests and strange demands. Nobody was laughing now. In fact, people were becoming very worried.
But we hoped, (or perhaps pretended,) that it wasn’t so bad. Some days Grandpa acted as if nothing was wrong. Some days, he was his old self. But then there were the other days, the days when he did things which seemed to shout, “Something is not right!”
We didn’t all come to the same conclusion at the same time. How soon the reality was admitted depended on how close the person was to the events unfolding, and what personal fears and hopes they had. A dramatic turning point came when Grandpa was supposed to undergo a colonoscopy. He was given a solution to take home and drink, which would clean out his colon for the upcoming procedure. But instead of having several bowel movements, Grandpa threw up throughout the evening, and night. That night he became a different man, a crazy man. He wandered around the house, mumbling to himself, poking at little LED lights on electronic devices, trying to make them go out. In the middle of the night he entered Arlan’s bedroom, waking him from a sound sleep.
“Is something the matter?” Arlan said, startled. “Can I get you something Grandpa?”
Like a mute, Grandpa bumbled about the darkened room, pawing at things, finally coming to rest on Arlan’s printer, which he then attempted to put in the garbage.
“What are you doing, Grandpa?”
Muttering something about taking out the garbage, Grandpa struggled a little while longer then said, “Oh, never mind,” and left as suddenly as he had come.
Life in the house suddenly had an entirely different feeling.
Sickness, as I was to later discover, made an Alzheimer’s patient much worse than his normal condition. That was the cause of the strange and terrible night for Grandpa. One night of sickness gave a glimpse into the future everyday existence. It was coming, and that night it could no longer be denied.
Grandpa recovered from his night of vomiting, but he never did have the colonoscopy. And, somehow, it seemed things were permanently different. I remember that when Grandpa came over for a birthday party he was noticeably impaired. Not enough for an inattentive stranger to notice, but I noticed. He appeared even more withdrawn into himself, as if his world had shrunken down into a little circle around him. He hunched at the dinner table as I brought him his coffee for supper, looking harried and uncertain over the prospect of eating supper in the boisterous atmosphere. During the evening visit he appeared disconnected, one minute present for the conversation, the next minute distant, as if a synapse broke somewhere, leaving him to wander off in his own thoughts.
The evening would become more strange.
After the meal Grandpa got up from the supper table to go use the bathroom but instead headed for the laundry-room, and when intercepted he explained that he wanted to “Go piss in the corner over there.”
Once his business was completed in the bathroom Grandpa went out to sit on the porch. Apparently he found the chair too hard and uncomfortable, because he went back in the house, took a soft dinner roll from a basket on the table, wrapped it up in a paper towel, and brought it back outside to place on the chair and then sit on it. Both events were bizarre, and so unlike the Grandpa I had known, but only the beginning of the Grandpa I would come to know.
Grandpa was taken in for tests. Brain scans, and many questions later, he was diagnosed with Alzheimer’s. The doctor, quite unfairly I think, judged him to be at the mental level of a 2-year-old, and soon unable to recognize even his wife. Thrusting Grandpa into a stressful, unfamiliar environment left him flustered and recalcitrant, something an inattentive doctor could easily read as stupidity. Though becoming increasingly confused, Grandpa’s mental ability was not reduced to that of a two-year-old, and two years later he could still recognize his wife.
But even if overly harsh, the core diagnoses was correct. Grandpa had Alzheimer’s, and it was starting to get bad. The only place left to go was very bad. The strain on Grandma from taking care of an increasingly agitated and incapable Grandpa was beginning to show. Unless Grandpa died soon, Grandma would certainly need help. The observation, rather obvious, was floated around in conversation, but nothing further said, or concluded.
With college finished Arlan remained with Grandma and Grandpa while he began job hunting. When the call came in that Arlan was accepted for a position of employment, Grandpa was the only one around to answer. The conversation that followed was later related to Arlan by his employer, on whom it had made a big impression.
“Hello?” Grandpa said.
The man said he wished to speak with Arlan.
“Okay, let me go find him,” Grandpa said.
There followed a long wait. Then Grandpa picked up the phone again.
“Hello?” he said.
The man stated his request again.
“Okay, hang on,” Grandpa said again, and left.
There followed yet another period of silence during Grandpa’s absence. Finally, he finished wandering around and picked up the phone again.
“Hello,” he said. “I can’t help you, and apparently there is nobody here who can.”
It was a prescient statement.