Monique
Day 217—Dinner for Two
I never want to see this place again. It’s bad enough when I’m home alone at night, thinking about all the terrible things that must be going on here, but to be here and witness them myself—it’s criminal!
Sometimes I wish Saul would have killed himself when he was first diagnosed. It would have saved him from this miserable existence, and saved the children and me from our unbearable agony.
Today was awful. I’m told it will get even worse, but I can’t imagine how. I was late—I usually like to get there before lunch so that I can help Saul with his food. It isn’t that the people on the staff aren’t good, but there just aren’t enough of them to give the personal attention I want for him.
When I reached the fourth-floor lounge, an elegant lady with snow-white coiffed hair, dressed in a silk suit with a fancy silver broach, was sitting erect at one end of a long banquet table covered with blue-and-white-checkered plastic. Saul sat at the other end, in his polo shirt, hunched over. They were the only two at the table. The scene reminded me of one of those dinners between a husband and wife in a European castle, where they were so far apart that they couldn’t hear each other talk—and probably preferred it that way.
Saul was quite agitated. Wouldn’t you be, having to suffer like he is? He was banging on his plate with his spoon, softly at first, and then louder, as if building up to a grand crescendo. One of the staff took the spoon from his hand. He picked up his fork and started banging again. Suddenly, the woman at the other end of the table shouted at him to shut up and stuck her tongue out.
The others in the lounge didn’t even look up. But Saul did, and he started to bang louder and louder. Now the woman was on her feet, furious, waving her fist at Saul with such ferocity that I was scared she was going to go over and punch him. The orderlies didn’t seem concerned—all in a day’s work, I guess.
The woman continued shaking her fist and called him a bastard, yelling that his teeth would fly if he didn’t shut up. Then she began using the “F” word, saying she was going to f…ing kill him if he didn’t shut up. Well, let me tell you, I would have f…ing killed her if she’d gotten any closer to him.
This went on for just a few moments—Saul banging, and the woman threatening him. Then, just as quickly as it started, it stopped, and it was as if nothing had happened.
Saul
Day 217—The Woman
biTchy! BitCh!
Monique
Day 231—Just Another Day at the Manoir
Do you remember the lady who sat across from Saul at the lunch table a couple of weeks ago? The one who threatened him because she didn’t like him banging his fork? Well, today when I arrived at the Manoir just after noon, there she was, sitting in her same spot. One of the attendants told me that she causes a big scene if anyone tries to take her place at the head of the table. Another woman was seated beside her, also dressed to the nines. They seemed to be caught up in very serious conversation. You would think they were solving the world’s problems. But when I moved closer, I realized that neither one was saying anything coherent, in French or English.
The other chairs were occupied by an assortment of loonies. I’m sorry. I don’t mean that, but sometimes I really believe that all these people are so much further gone than Saul, that their behavior is rubbing off on him, propelling him quickly down the abyss. Look at him sitting over there, oblivious to me or any of the others. That’s not the way he was when he arrived here. And look at that Italian guy chewing his food over and over. It reminds me of when I went to a spa years ago. They taught us it was healthy to chew every piece of food twenty times before swallowing. This guy must be doing it a hundred times. It will be dinnertime before he finishes lunch.
And look at the man beside him, whistling through his false teeth. The sound is driving me crazy. And the woman who seems to have hijacked her fellow diners’ orange juice cans and keeps moving them around like some kind of shell game. Other than that old witch and her friend, none of them is even talking to any of the others, let alone aware of the others’ presence.
I must be honest with you. I am torn about coming down here, but I do come every day. The kids haven’t been pulling their weight. Well, that’s not really fair. Florence has been here a lot, considering her work and that she has to be there for Howard and Daniel. And she always brings some of Saul’s favorite foods, although he doesn’t seem to remember he likes them.
I guess its Joey I’m upset with. Sure, he shows up a couple of times a week. But he lives less than ten blocks away and only stays for a few minutes. He spends more time with that damn dog than he does with his own father. The social worker downstairs said maybe he can’t face the thought that his father is dying. I frankly think he just doesn’t really care that much, and that this whole thing is cramping his style. He’d rather be out with his friends than be here with his family. I must say I am disappointed, more than disappointed.
The head nurse on Saul’s floor told me that he has been acting up at night, and they have been giving him some drugs to calm him down. I guess that’s okay, and maybe the drugs make whatever time he has more pleasant. He deserves that.
Joey
Day 242—Dog Day Afternoon
Mother has always hated him, and Florence claims Bernie is allergic to cats and dogs. So ever since Dad was admitted to Manoir Laurier, I have become Dugin’s guardian.
Let me get one thing straight: I’m no dog lover. But having shared that with you, I felt an obligation to take Dugin in, knowing how much he means to Dad.
They don’t let dogs into Manoir Laurier, even for visits. So if it’s a nice day and I can get away from my work for a while—which, I must admit, isn’t often—I take Dad out for a walk with Dugin. They still have a connection, that’s for sure. Even when Dad is in a foul mood or not totally with the program, his face lights up when he sees Dugin. And the feeling is obviously mutual. You can tell that by how Dugin drools and wags his tail.
What drives me crazy is the hair he sheds all over my black suede sofa. That’s where I usually start my pitch to the ladies—you know, a couple of glasses of chardonnay, some kissing and fondling, and then into the bedroom for the grand finale. At least that’s the way it used to be. Now the chicks look at the scuzzy gold hair and won’t go near the couch.
I ordered a new leather one from a discount outlet, but it won’t be here for another couple of weeks. And now it looks like it won’t really matter by then.
You’re probably asking yourself, why won’t it matter? Well, Dugin was vomiting a lot last week and didn’t seem to have much energy. So a few days ago, I took him down to Dr. Nelson’s office. He examined him and did some tests, blood work, and an X-ray. He called me the next day and informed me that Dugin has liver cancer.
I told Mom. She reacted like I had just mentioned I had a headache. And it didn’t play much better with Florence. Both of them told me I was nuts to worry about a mutt when Dad was going through so much. Maybe reality is they’re both feeling sorry for themselves for what they’re going through.
Regardless, I wasn’t going to let Dugin suffer, so I called Dr. Nelson and told him we all agreed—I was too embarrassed to tell him my mother and sister didn’t give a shit—that Dugin should be put down.
This afternoon, I took Dugin to Dr. Nelson’s. The receptionist showed us into a room with a table in the middle. Dr. Nelson came in a few minutes later. He reached down and placed both hands around Dugin’s face and told him he would be fine and then hoisted him onto the table. He asked me if I wanted Dugin buried or cremated. Good question. What would Dad want? Not that it really matters, I guess, because he won’t know anyway. Or will he? I often wonder how much, if anything, he does understand. Dr. Tremblay said even in his condition, maybe a fair amount. Not all the time, that’s for sure, but probably more than we think.
I told the doctor to have him cremated and give me back the ashes. When Dad goes, I’ll place the urn beside his at the cemetery. That’s what he would probably want.
Dr. Nelson started preparing the syringe. Dugin lay in front of me. I thought I saw him grimace for a moment, and then he stopped, almost as if he wasn’t going to let anyone know he was in pain. It was obvious he had been suffering quite a bit the past few days. I could see it in his eyes, which had turned a muddy yellow, and the way he could barely lift himself up on the sofa.
Dr. Nelson put his hand on my shoulder and told me to take whatever time I needed to say good-bye, and then he started toward the open door to his private office. I almost called out, “I don’t need any time; let’s get on with it.” Then I glanced down at Dugin, lying on his side, looking up at me. He seemed so alone, so frightened. “I’ll just take a few moments,” I told the doctor.
I plunked myself down on a chair beside the table. Somehow, Dugin pushed his bloated body toward me and turned his head so he was now facing me. I patted him a few times and then languidly stroked his soft mane, mumbling that we all loved him and would miss him, and that he would go to a better place.
I didn’t want to stop, knowing that by doing so I would be bringing his life to an end. Finally, and reluctantly, I called for Dr. Nelson. He came in and picked up the syringe and inserted the needle into a vein in Dugin’s leg.
Now I was stroking him with both hands. He moaned once and then whimpered, his eyes sad and glassy, and, I felt, fully aware of what was about to happen. Dr. Nelson looked over at me. I nodded quickly, knowing if I didn’t, I would lose my resolve. The doctor slowly pushed the plunger down, releasing the liquid. Moments later, Dugin’s body heaved one last time and his eyes closed. At least he won’t suffer anymore. I wonder if we can say the same about Dad.
Dr. Tremblay
Day 261—An Update
It’s been a while since I have given you an update on Mr. Reimer. Unfortunately, but predictably, the news isn’t very good. It’s been less than a year since Mrs. Reimer called me to inform me she was having her husband admitted to Manoir Laurier. Frankly, I thought she should have done it long before, for both their sakes, but the pattern seems to be for a caregiver-spouse to go through torment, agony, and especially guilt, until he or she can’t take it anymore. I believe that’s what happened to Mrs. Reimer in this case.
I’ve been to see Mr. Reimer several times in the last few months at Manoir Laurier. His case is fairly typical, the timing of each stage approximating the median. I would have to say he is in the late stage of the disease now. That doesn’t mean he will die in the next weeks or even months, but his cognitive and physiological abilities will continue to deteriorate at an even more rapid pace, until his entire system shuts down.
One thing we really don’t know empirically is how much, if anything, patients at this stage can comprehend. We do know that their ability to communicate coherently is practically nil. Sometimes a slight gesture, eye movement, or facial expression may be conveying any thoughts they may have. Occasionally, for a brief moment or moments, for some reason especially near the end, they may appear lucid and say a few words. Whether this is by rote or an actual mental decision, we don’t know at this point.
A wince may mean they’re in pain, and then we have to do tests to discover what, if any, other medical problem they may have that might be causing them discomfort.
There are two existing tools used to identify the severity of dementia, the Reisberg Scale, I’ve alluded to previously, and the Functional Assessment Staging. Both have shown communication abilities in individuals with late-stage Alzheimer’s disease to be minimal to nonexistent. There’s a fine line between the two. The former means there is at least some comprehension, even, if as stated, it is minimal. The question is, Can they really make any sense of it, and if, so how much? So far, there has been no conclusive research on this subject that I am aware of.
Yesterday, I told Mrs. Reimer that her husband would be better off on the third floor where there is more supervision. At first, she was adamant that he stay where he was, but I could see through her tears that she really wasn’t in a state of denial, but just was having trouble coping with the cruelness of it all. I assured her it was best for Mr. Reimer.
She looked up at me, patted my arm, and said, “I know, I know.”
Monique
Day 430—A Step Closer
Today is a day that I’ve thought about for a long time but prayed would never happen, even though Dr. Tremblay suggested it months ago. Saul is finally being moved from his room on the fourth floor down to the third. As I think I mentioned a while back, the third floor is reserved for those with … those who are the … what I’m trying to say is it’s the floor for the ones I used to call the zombies. You probably remember my referring to them that way when Saul first got here. Well, now he’s one of them, one of those who are incapable of almost any normal functions, physical or mental.
The move was scheduled for two o’clock. We had a family discussion and decided it would be less disruptive if we moved the furniture and his belongings while he was downstairs at the sing-along—not that he sings anymore. That way, hopefully, he wouldn’t really notice and become more confused than he already is.
The room is almost the same size, although the windows are on the left side instead of the right. Apart from that, and the walls being green, with his furniture and paintings, it should look almost the same. This is one time when I hope he won’t notice anything.
Now it’s five o’clock, and they haven’t moved a thing. The men who were supposed to do it were held up in traffic due to the snowstorm. I can’t blame them for that, but meanwhile we had already packed up the room on the fourth floor, and here we are in Saul’s new room on the third floor with bare walls and no furniture except a stool I took from the corridor and Saul’s wheelchair. It seems so lonely and cold.
So far, Saul doesn’t look like he notices anything different. At least I don’t think so. But he’s making some of the strange noises he sometimes makes when he gets agitated, so maybe he does.
But to be honest, I think the whole thing is affecting me more than him. To be alone, just the two of us, in this empty room, unable to communicate … Oh my God, I would give anything to turn back the clock.
Saul
Day 430—Where?
NOWhere noThiNg
Monique
Day 551—A Modern Day Torture Chamber
I went to a movie last night. It was a beautiful evening, so afterward I decided to walk over to Manoir Laurier. It was about nine o’clock when I exited the elevator and approached the open door to Saul’s room. I heard hysterical howling interspersed with a barrage of swearing. A nurse, with an unlit cigarette and a lighter tucked in her hand, walked by the room, not bothering to look in, and turned right toward a small balcony off the end of the corridor.
What I saw when I got inside Saul’s room is almost beyond description. There he was, flailing away, trying to escape the restraints wrapped around his body. There were ropes strung through the sidebars, pinning down his legs, hips, and chest, so only his head could move. His face was a flushed crimson as he struggled to get up. He was like a madman, his words barely intelligible, his shrill ranting piercing the air, his head bobbing up and down. What in God’s name were they doing to him? What did he ever do to anyone to deserve this kind of treatment?
I was able to loosen one of the ropes that bit into his hips and was working on the one that shackled his chest, when his head came up from nowhere and butted me in the forehead. I fell to the floor, my face covered in blood. Saul peered through the bars—trying to figure out what was going on, I guess.
It might have been the sight of the blood that precipitated what happened next. He went totally crazy. Now, half-freed from the restraints, he shook the bed, causing it to rock from side to side in such a way that I was sure it would collapse on me. He was like an animal, guttural sounds emanating from his contorted mouth as his eyes bulged.
Finally, he broke through the last restraint. It was like one of those Tarzan movies, where Tarzan would beat his chest before sliding down a vine.
As he looked down at me, I wasn’t sure if he was about to kill me or save me. I guess I’ll never know, because the nurse, who had seemed disinterested before she had her nicotine fix, rushed into the room. She pushed a panic button on the wall, then just stood there transfixed, not sure if she should help me or try to hold Saul back. She didn’t have to make that decision, as within seconds four attendants swarmed into the room, pulling Saul to one side and me to the other. I sobbed as the nurse gave him a shot of something while the others held him. Seconds later, they lifted my slouching husband back on the bed and started to tie the restraints again.
I pushed one of the attendants aside. “Don’t do that to him,” I shrieked. “He’s a human being, not an animal. Leave him alone.”
I must have scared the devil out of them with that outburst, because they stopped in their tracks and looked over at me.
The bulky one with a shaved head said they were doing it for his own good, and so that what had happened to me wouldn’t happen again.
I said, “What about drugs? Wouldn’t they accomplish the same result?”
He just shrugged.
Later, I went to see the night administrator. She told me sometimes, as in Saul’s case, when patients are extremely agitated, they have to use restraints so that the patients won’t hurt themselves. Then with a pacifying smile, she said that as Saul’s disease progresses, he will become more docile and will not need to be restrained. Did she think that would make me feel better?