Monique
No Choice
The first few days after the trip were without incident—more or less. But that changed suddenly. In the last week, there was a beating, which resulted in a bruised arm and a cut on my left cheek. If that wasn’t bad enough, he used disgusting language, and I mean really disgusting.
The beating came out of thin air. He just got up and hit me. Thank God I was able to cover my face. After a few attempts to pry my arms away, he seemed satisfied to push me and slap my shoulders a few times before he calmed down. I can’t go through this anymore. Not for another month, another week, or even another day.
Joey, Florence, and Bernie are coming over later this afternoon. I have been packing Saul’s things all day. The administrator at Manoir Laurier told me to bring a few pairs of pajamas in addition to his clothes, and Velcro running shoes, which would be easier to put on and take off. Loose-fitting clothes, she said, would be more comfortable, especially when he has to be confined to a wheelchair. Just hearing her say that set me off crying again.
It is beginning to dawn on me that the man I have lived with for all these years is leaving me for good tonight. Never to step foot in our house again. Never to put his strong arm around my back, or throw his long leg over mine as we fall asleep. Never to fill the kitchen with the aroma of his coffee in the morning. It is as if he is heading to the execution chamber.
Part of me is relieved and part of me is scared, very scared. Why can’t we just go back in time? It’s true it hasn’t been a perfect marriage, but we’ve had a decent life together. And we have two children and two wonderful grandchildren. Maybe I should have been more appreciative of what we did have together. Sometimes I ask myself what gave me the right to judge him? Did I do what I could in this marriage? So many questions and so few answers. But I guess I will have lots of time to think about them. Lots of time to reminisce. Lots of loneliness.
Dr. Tremblay
Inevitable
You were doubtless thinking that I was referring to Mr. Reimer. And you probably said to yourself, I know there is no cure, and death is inevitable. And Mr. Reimer will be no exception.
No, I was referring to whether his son, Joey, may follow in his father’s footsteps. He came to my office last Wednesday, armed with a manila envelope that contained the results of a blood test he had done down in Vermont. The test is frowned upon in Quebec, and when it is performed for research purposes, the results are usually confidential and kept from the patient.
The lab had sealed the envelope, and as far as I could tell, Joey had not opened it. He asked me to take a look at it and tell him what it meant. As he passed it over to me, I could see the perspiration forming on his brow. I offered him a seat and then returned to my desk, sat back in my leather chair, and slid a letter opener under the flap. I looked down at the beige paper with a neat letterhead in block letters at the top. The lab had performed a test on chromosome 19 to discover more about the apolipoprotein gene.
Let me explain what they were looking for, and what that means to someone like Joey. The protein known as apolipoprotein, or ApoE, comes in three possible varieties: 2, 3, and 4. All of them help the body deliver cholesterol and triglyceride fats to cells through the bloodstream. We inherit one copy of the gene from our mother and one copy from our father.
The ApoE2 gene is the most efficient and generally protects us from Alzheimer’s. If you have two ApoE2 genes you could probably smoke a pack of cigarettes a day, drink a quart of vodka, and skip the gym—all with relatively no ill effects, although I am not recommending you do that.
The most common gene is ApoE3, which means we have to watch our diet, exercise, and generally maintain a healthy lifestyle. ApoE4 is the least efficient in doing its job, and although not an absolute predictor of Alzheimer’s, it means we are four times more likely to get the disease if we have one copy, and ten times more likely if we inherit two copies.
Still, we don’t do this kind of testing for two reasons: First, there are some people who have one ApoE4 gene, or even two, who don’t go on to develop Alzheimer’s. Second, other than for research purposes, it makes no sense, in my opinion, to burden people with the fact that the odds are that they may succumb to the disease, when there is no cure.
Sure, there are some doctors, especially in the United States, who think a patient has a right to know everything about his body and his health. They are the same ones who order the spinal tap I mentioned before or a PET scan looking at amyloid buildup. I am not one of those, nor are most of my fellow doctors in Canada. And for that reason, I did not even mention these tests to Joey.
Joey’s eyes were glued on me, searching for any sign of reassurance. I removed my glasses and looked at the blurry form in front of me.
He said, “Well? What do you think?”
I said, “These tests serve no purpose, and it’s best just to let me pass on the results for research purposes.”
He said, “l really want to know. Let’s do this now.”
I put my glasses back on and could see his face flushed, more with fear than anger.
I glanced once more at the sheet of paper in front of me and then looked up and said, “Unfortunately, you have two copies of the ApoE4 gene.”
Florence
What If?
Joey came over today. A rare visit. He knows Bernie and I aren’t going to lend him any more money. He’s already in hock to us for over thirty thousand dollars. Bernie says to forget ever seeing any of it again, but somehow I think Joey will make it eventually. Or maybe it’s just blind hope for him.
He marched in, brushing by me like a man on a mission. I thought he would sit down when he got to the living room, but he just kept circling the furniture. I could tell this was a big one. What it was, I wasn’t sure, and something told me I didn’t want to know.
He didn’t waste any time getting to the reason for his visit. He had been to Dr. Tremblay, he explained, and the doctor had told him he had two copies of the ApoE4 gene. Even though I had no idea what he was talking about, I knew it wasn’t good. And I was right.
By the time Joey finished explaining what it meant, my body was covered in goose bumps. Joey, my only brother, might end up like Father. He tried to put up a front of bravado, but I could see the fear in his eyes. I told him I would be there for him, and his slight nod told me he knew I would be.
Then he asked about me. What if I had this ApoE4 gene, or, worse, two of them? Suddenly, it dawned on me. It wasn’t just about Joey; it was about me, as well. My life as I knew it could change one day on a dime. I, too, could end up like my father.
After a few seconds of digesting all this, I realized this wasn’t even just about Joey and me; it was about my kids. If I had even one copy, my kids could inherit it. And if, God forbid, Bernie had one, too, the kids could have two copies—according to Joey, an almost certain death sentence.
If I had the test and didn’t have the gene—fine. But what if I did? What would I do next? Have Bernie tested? Have the kids tested? And what if I did all that and the results weren’t what I wanted to hear? Then what? What could I do, anyway, other than worry? According to Dr. Tremblay, there is no cure on the horizon.
Joey and I both agreed that I should tell Bernie, but with Mother’s frail health, it would be better not to say anything to her.
Bernie nearly had a breakdown when I told him. But I reasoned, Look, maybe I have a copy, or even two; maybe I don’t. And even if I do, it’s not a sure thing that I would get it, so why not just let it be. As for the kids, given their age, I’m sure even if all this came to be, there would be a cure by that time. Or would there?
Part Three: The Final Stop
Monique
Day 1—Manoir Laurier
It was like a procession tonight as we pulled up to the Manoir. Three cars—Saul and I in a taxi, followed by Florence and Bernie, and Joey’s noisy sports car in the rear.
I looked through the window at what seemed like a typical hotel dining room. At eight o’clock, it was already empty. As was the lobby, with its marble entry, high-back chairs covered in somber-colored chintz, and mahogany furniture sitting on a beautiful circular rug.
The first set of glass doors opened automatically. But the second set wouldn’t open until the first closed, and I had to push a little black button near the top of the door. I guess this complicated process kept the patients safely inside. A pudgy middle-aged woman with too much perfume came out from behind a small desk to the right where there were several screens showing different parts of the building. We exchanged a few pleasantries, and then she took Saul’s arm and signaled for me to follow.
The three of us waited for the elevator while the kids went to get Saul’s things from Bernie’s car. I remembered that when I’d come here the first time to tour the facility, the administrator had told me that there were no rooms on the first floor, except for the dining room, kitchen, offices, and some large rooms for communal activities. The second floor, she said, was for elderly patients with less serious illnesses.
When the elevator opened, a rotund man in pajamas and a bathrobe was standing at the back. The woman asked him where he was going. The man smiled and replied, “To the swimming pool.” The woman smiled back. And that was it.
I said, “I didn’t know there was a swimming pool.”
The woman smiled again, but this time at me. “That’s right,” she said, “there is no swimming pool.”
Saul didn’t seem to understand exactly what was happening. On the way over, I’d tried to reassure him that he would like it here, and that it wouldn’t be permanent. I hated myself for lying to him, but I didn’t have the resolve to tell him he would never sleep in his own house again.
When I’d gone over earlier to sign the necessary papers, the administrator had told me we could furnish Saul’s room in any way we wanted. The kids and I had decided right then that we would pack up as many things as we could to decorate his new room so that he will be in somewhat familiar surroundings, and, hopefully, be less agitated.
Joey will rent a U-Haul tomorrow. We’ll fill it with some bedroom furniture, family pictures, and his favorite chair. That’s the least we can do.
The elevator stopped on the fourth floor. It holds twenty-six Alzheimer’s patients in the middle stage of the disease. The third floor is reserved for those closer to death. Well, if this was the middle stage, I dreaded to see what would come next.
I almost collided with an emaciated woman walking in the pink-colored hallway, squeezing the sides of her nightgown while chirping like a bird. Directly behind her, a man groaned in a voice that sounded like the devil himself. My first reaction was to grab Saul and head back home. I guess the woman with the heavy perfume must have realized how uneasy I was. She reached over and touched my arm.
The room was small, maybe twelve by eighteen feet, with a bathroom and a tiny closet. The walls were bare, the floor was linoleum, and the bed had side rails. As elegant as the lobby was, the room forced me to come to grips with the fact that this was no more than a fancy hospital.