Authors: Deborah Raney
Yes, there had been sorrowful times early in their marriage. And though it was a tired cliché, time and God really had healed their wounds. Of course, wounds left scars that would always be there, a testament to the pain they’d endured. Catherine’s death would forever be a tender spot in their memories. But John and Ellen had found comfort in the psalmist’s words, “Joy comes in the morning.”
Now, as Ellen thrashed to the surface of reality, she wondered: Would there be a morning of joy to this dark night? Had their luck run out? The young wife and mother from those memories hadn’t believed in luck. But sometimes, when her thoughts blurred and the future turned murky, luck seemed easier to grasp than faith.
T
he receptionist pointed John and Ellen toward a small alcove near the elevators, and they took seats and waited there.
Clinic waiting rooms were becoming far too familiar. Two more days of testing at Northwestern Memorial had still produced nothing definite. They’d waited an endless ten days for the last test results, and finally, they’d been called in for this consultation with Dr. William Gallia.
Ellen sat erect and motionless on a gray metal chair, while John fidgeted in the seat beside her. He jumped up and paced to the window and back, picked up a magazine from the stack on a low table and leafed aimlessly through it, then tossed it back on the pile and resumed his pacing. It struck him that anyone watching them would have thought
he
was the patient.
Finally a nurse appeared in the doorway. “Ellen Brighton?”
Ellen looked up, obviously recognizing her name, but she didn’t move from her seat. John nodded to the nurse and took Ellen’s arm and led her, following the nurse down the unadorned hallway.
Dr. Gallia’s office was cold and austere, like the man who inhabited it. The pungent odor of alcohol and disinfectant assaulted John’s nostrils. Once he would have perceived the odor as clean, even wholesome. Now it repulsed him, conjuring images of death and decay.
The nurse motioned for Ellen to take a seat on the side of the examining table. John felt awkward and irrelevant, towering as he did over both women. He perched on the rolling stool at the foot of the table and then realized this was the doctor’s seat. Finally, he settled on a folding chair that had been hidden behind the open door.
Ellen had not spoken since they got off the elevator. John wondered what she was thinking. The thoughts she’d given voice to lately were so inscrutable that some days he despaired of ever understanding her mind again.
He’d tried to talk to her about the problems she was having. He knew she must be worried, too. They had always been able to talk things out with each other. But whenever he questioned her now—and he was always gentle about it—she’d pretend she hadn’t heard him, or she changed the subject. Or she would give him a quasi reply that had little to do with what he’d asked.
The nurse took Ellen’s blood pressure, pulse and temperature, recording them on the chart in silence. Then without explanation or instruction, she left the room. John was becoming frustrated with the sterility—not only of the premises, but the personnel, as well. How out of place a warm smile would have been in this frigid clinic—but how welcome.
Finally, after twenty minutes, Dr. Gallia tapped on the door and entered before either of them could respond. He was short of stature, with a fringe of white hair emphasizing the shiny baldness of his head. He wore wire-framed glasses low on his nose and looked over these as he addressed Ellen.
“Hello, Mrs. Brighton. How are you feeling today?”
Ellen spoke slowly, suspicion tingeing her voice. “I’m fine, I guess. I wish you people would figure out what’s wrong with me so I can get on with my life.”
She didn’t sound like herself, and John wanted to apologize for her. Compared to her usual friendly manner, she seemed almost rude. But this man didn’t know Ellen, so John kept silent.
Ellen seemed to have retreated to that place deep inside her mind where she fled so often recently.
The doctor looked at the chart in his hands, appearing to avoid her eyes as he spoke. “Well, for starters, I’m going to have you answer a few questions.” He spent five or ten minutes going over the same questions Ellen had been asked by nearly every specialist they’d seen. He put her through a battery of simple questions about the day’s date and identifying simple objects like his watch and a pencil. As before, she answered the questions easily until the doctor asked her to spell a word backward, and count backward from one hundred.
It was all John could do not to prompt her. The task seemed simple to him. He couldn’t imagine why Ellen was making it so difficult.
Like the others, Dr. Gallia asked about Ellen’s daily routine and inquired about her health history. Didn’t they have these things on file? Why couldn’t these doctors get their information together and save themselves—and Ellen—the annoyance of going through the same routine all over again.
Some of the questions were deflected to John. He answered as briefly and honestly as he could.
Finally, the doctor closed the folder that held Ellen’s chart and abruptly left the room without explanation.
John thought it rude, but Ellen seemed not to notice.
Dr. Gallia had a reputation for being one of Chicago’s finest neurologists, but John decided the man’s talents must lie in an area other than patient-physician rapport.
After another ten minutes, a nurse—a different one than before—stuck her head in the door. “Would you come with me, please.”
She led them down the hall to a small but handsomely appointed office. “The doctor will be with you in a few minutes.”
They sat facing the desk, backs to the door, not speaking, like defendants waiting for a judge to sentence them—or acquit them.
Dr. Gallia entered the room and situated himself at the desk. “Mrs. Brighton, Mr. Brighton, as you know, we have all the results back now from the tests that were completed at the medical center?” He spoke it like a question but didn’t pause for a response. “I’m very sorry to have to be the bearer of bad news, but all the test results are consistent with my original suspicion of Alzheimer’s disease. I assume you are familiar with the term?”
Stunned, John nodded mechanically. He reached for Ellen’s hand and squeezed it.
“Do you understand what I’m saying, Mrs. Brighton?”
Ellen turned her head toward John, but her eyes glazed over and her gaze traveled beyond him. He knew she had not understood at all.
Dr. Gallia apparently realized it, too, for he directed his next comments at John, speaking as though Ellen wasn’t in the room. And in many ways, she wasn’t.
“It is rather unusual, though not unheard of, to see Alzheimer’s in someone as young as your wife,” the doctor said, shifting in his seat. “Unfortunately, we are beginning to see it more and more in people in their forties and fifties. You must understand that there isn’t a definitive test for Alzheimer’s, except with an autopsy.”
Though John heard the doctor’s words clearly, they came as through a long tunnel, muffled and echoing harshly back at him.
“With this disease we rely a great deal on the process of elimination. The tests your wife went through rule out the other disorders we might suspect with her symptoms—” he counted them off on his fingers “—Parkinson’s, multi-infarct dementia, Pick’s disease…”
John had been doing his own research on the Internet late at night after Ellen had gone to bed. These names were all too familiar. It had seemed that for each new disease he’d read about, he found a paragraph that seemed to describe Ellen’s symptoms perfectly. Before, he’d skimmed over words like
senility
and
dementia.
Ellen was too young for those words. But now he had a name—a label to put on all this craziness.
Alzheimer’s.
Dr. Gallia continued. “We can’t detect any evidence of a stroke or hormone imbalance. Of course, as I said, though we’ve made great strides, Alzheimer’s still cannot be confirmed definitively except by autopsy. But your wife’s test results pretty much exclude any other possibilities. I think we’re looking at a solid case of Alzheimer’s here, with the only variable being the early onset.”
John watched the doctor in a state of shock, detached from the scene…everything seemed to be in slow motion. Dr. Gallia took off his glasses, rubbed the bridge of his nose and sat with his head bent for so long that John began to wonder if he was fighting his emotions…or if he’d gone to sleep. But when the doctor looked up, his expression was matter-of-fact. He picked up a prescription pad, writing as he spoke.
“I’m going to refer you to the Alzheimer’s Association. It is an excellent national organization that was started right here in Chicago. They can recommend some books and other literature that will be helpful. They also have a number of support groups in this area. At some point I think you will find it very helpful to speak with others who are going through the same things you will be.”
John was numb. He felt his heart begin to beat erratically in his chest, and the color drained from his face. He stroked Ellen’s hand and managed to blurt out a few rudimentary questions while she sat seemingly oblivious.
“Where…where do we go from here? Isn’t there some sort of medicine, some drug you can give her?”
The doctor nodded, pulled a prescription pad from the pocket of his lab coat and began scribbling. “Yes. I’m going to give you a couple of prescriptions she can start.” He rattled off the names of the drugs and some instructions that may as well have been in a foreign language for all John understood.
“The clinical trials on some of these newer drugs are promising.” Dr. Gallia leaned toward him, warming to the subject. “A lot of progress has been made even in the last five or ten years, and researchers are much more optimistic, but the outcomes vary widely from individual to individual. We’ll just have to see how she responds. Don’t expect a miracle.”
John was incredulous. “But…there has to be some therapy or—
something
else we can do…”
Dr. Gallia sighed deeply, the first sign of empathy John had seen him exhibit. He pushed a button on his telephone and within a few seconds the nurse who’d ushered them in to the office appeared. “Mrs. Brighton, could you go with Carol to the waiting room, please?”
Panic crawled up the back of his throat. He stood, and Ellen echoed his movements.
“Follow me, Mrs. Brighton,” the nurse said cheerfully.
Ellen did so, as if she were a robot taking an order.
When the door closed behind them, John slumped back into the chair.
Dr. Gallia placed his hands together and steepled his fingers under his chin. “Mr. Brighton, what you can do is take your wife home and enjoy the next days and weeks and months as much as possible. Try to keep life as normal and routine as you can. Above all, don’t fall into the trap of treating her like an invalid. There will be plenty of time for that later. See to it that she does everything she can possibly do for herself for as long as she can. It may be helpful to seek counseling for both your wife and yourself. This is a very difficult disease to deal with. Certainly if you want to try some physical therapy or speech therapy when the time comes, you have every right to do that, but my personal opinion is that those things are basically a waste of valuable time.”
He paused to let his words sink in. “I won’t lie to you, Mr. Brighton. This is not a pretty disease. You must accept the fact that over the next few years your wife is going to change drastically. Of course, we can’t predict how quickly the disease will progress. It varies greatly from one person to the next.”
The truth slowly began to register. John stumbled to his feet and stood behind his chair, clutching its back for support. “But surely there must be something you can do!”
John started to pace back and forth in the tiny space in front of the doctor’s desk. Panic rose in his throat. His hands grasped at the empty air as though he could pull an answer from its nothingness.
He was met with Dr. Gallia’s calm, clinical reply. “At some point we will probably prescribe tranquilizers or possibly an antidepressant, depending on the direction the disease takes with your wife. There are always new experimental drugs in the works, but as far as a wonder drug, I’m sorry, there just isn’t anything yet.”
John abruptly stopped pacing. “What…what caused this? Why Ellen?”
“We don’t know. Some studies seem to indicate…”
But John wasn’t listening. His mind raced, and he interrupted as a new thought pounded into his brain. “Is this…is it terminal?”
“Alzheimer’s causes actual disintegration of the tissues of the brain, so yes, in that sense it is terminal. And there is no cure. Of course, every case is different.”
“How…how much time does she have?” He couldn’t believe he was asking this question. Couldn’t believe he was getting this news.
“Each case is different,” the doctor said again. “I don’t ever put a time frame on it, but generally we see patients surviving anywhere from five to fifteen years, possibly a bit longer, though frankly, that is no blessing. Quite honestly, when early onset is a factor, the survival time is sometimes shorter. In any case, it’s often infections—pneumonia and such—that cause death in these patients, especially after they have become bedridden.”
“I know I’ve given you a great deal to think about, Mr. Brighton.” Dr. Gallia stood, tacitly dismissing John. “Please get in touch with the Alzheimer’s Association. They will be very helpful in answering your questions…and it’s understandable that you will have many questions.”
“When…when do you want to see her again?” John was grasping at straws. He wasn’t ready to be dismissed. He couldn’t deal with this yet. How could he face Ellen with such devastating news?
“I don’t see any reason why your own physician—” he leafed through the chart “—Dr. Morton, isn’t it?”
John nodded.
“He can monitor your wife’s prescriptions and answer any questions you have about that. Unless she gets sick, there’s really no reason for her to see a doctor more often than her regular checkups. Of course, if she begins to decline rapidly, or if you feel she would benefit from antidepressant medication or sedatives, then you may want to have her reevaluated.”