by Cronk, LN
Laci nodded again.
“And so if the kids find out, you know Lily’s gonna tell Jordan and that means that Charlotte and Mrs. White are going to find out . . .”
“And Tanner,” Laci finished.
I nodded.
“I have to tell my dad,” Laci added quietly. (Laci’s dad lived down in Florida now.) I wondered silently if we needed to tell my dad.
“Maybe we should go see the kids,” Laci suggested. “Tell them in person.”
“I . . . I don’t see how we can do that,” I said, shaking my head. I didn’t really want to give them news like this over the phone either, but they were all pretty spread out. Grace was in California and the other three girls were all here in the Midwest. But Dorito was in Mexico of course, and Marco was all the way in Australia. There was no way we were going to be able to see each one of the kids in person before word spread like wildfire and they all found out from each another.
“No,” she sighed. “I guess not.”
I sighed too. There probably wasn’t going to be a right way to tell everyone . . . or at least not a good way.
“Can we just eat right now and figure it out later?” I asked her. I was still holding my fork with an uneaten mouthful of pancakes on the end of it.
“I’m sorry,” she said, looking teary-eyed.
I set my fork down and put my arm around her waist.
“Don’t be sorry,” I said, putting my other arm around her too and drawing her up against me. “I just want you to eat something and stop worrying . . .”
“How am I supposed to stop worrying?” she asked in a choked voice.
I closed my eyes and burrowed my face into her hair.
“God hasn’t given us the spirit of fear,” I whispered in her ear, “but of power and love.”
I surprised myself by doing this. Memorizing Scripture and spouting it off at appropriate times was Laci’s specialty, not mine.
She immediately stopped crying and pulled back, turning to stare at me with a look of awe on her face. (I guess my quoting Scripture had surprised her, too.)
“Say the rest,” she breathed.
“I, uhhhh . . . I don’t know the rest,” I admitted.
“God hasn’t given us the spirit of fear,” she repeated, “but of power, and of love, and of a sound mind.”
I looked at her and then smiled. She smiled back. Then I kissed her and she kissed me back.
“You taste like syrup,” she said.
“You should try it,” I said, holding up my forkful of pancakes to her mouth. “I promise you it’s a whole lot better than oatmeal.”
She took the pancakes off the end of my fork and smiled at me again while she chewed. I silently thanked God for putting exactly the right piece of Scripture in my head at exactly the right moment. . . and then I asked Him to please let those little blue pills that were rattling around in the pharmacy bottle in Laci’s purse start to do their stuff.
~ ~ ~
I WAS NOT at all surprised to find Mike and Danica waiting for us when we got back to their house. Danica looked at us worriedly and Mike expectantly, as they ushered us into their living room and we all sat down.
I told them what Dr. Keener had said and I watched Danica tear up as Mike shook his head and turned away, unable to bring himself to look at me.
Danica came over to the couch where Laci and I were and sat down next to Laci, wrapping an arm around her and murmuring softly into her ear like she had the night before. Mike finally turned back to us and sat on the arm of the couch by me, putting his hand on my shoulder.
I’d been feeling pretty good until now. No brain tumor . . . five to twenty years . . .
But now I looked up at Mike and saw tears in his eyes too, and next to me all I heard was the sound of Laci sobbing.
And suddenly, I didn’t feel too good anymore.
Within an hour, Danica claimed she needed to go shopping for something and Laci offered to go with her. I knew it was all a big ruse so that the two of them could have some time together and so Laci could cry some more and Danica could console her. But that was fine with me. I wanted the chance to talk with Mike when Laci wasn’t around anyway.
“Lay it out for me, Mike,” I said as soon as they’d left. “I wanna know exactly what’s gonna happen.”
“I don’t know exactly what’s gonna happen.”
“You’ve got a pretty good idea.”
“A lot can happen,” he said. “It’s different for everyone.”
“Then tell me what might happen.”
He sighed and looked away. After a minute he began.
“Every day,” he said, looking back at me, “they’re making advances . . . coming up with new treatments, new medications. This Coceptiva he’s put you on? I’ve heard really great things about it.”
“But nothing’s going to stop it,” I clarified.
“No,” he admitted. “But it can really stave it off for months.”
“Months?” Only months?
“Maybe years . . .”
“And then what?”
“And then . . . then it starts to lose its effectiveness.”
“And?”
“And what?”
“And what happens then?”
“I told you,” he said. “No one can predict these things – every person is different.”
“Mike,” I said, pleadingly. “Talk to me. Just tell me what’s probably gonna happen.”
He took a deep breath and finally nodded.
“One thing that often happens,” he began, “is that your short-term memory will start to go. Your long-term memory may stay intact, but you won’t be able to remember what happened yesterday. Simple things that used to be second nature to you will become more difficult . . . like how to dial a number on the phone, how to drive to the grocery store.”
He didn’t go on.
“And?” I pressed.
“After a while,” he said finally, “you’re going to have trouble doing things like brushing your teeth or feeding yourself. Eventually – well, eventually you won’t remember how to do anything.”
“How long before I’m like that?”
“There’s no telling,” he said. “It just depends on how aggressive it is.”
“How will I die?”
“You could die from anything, Dave, just like the rest of us. Heart attack, stroke, cancer . . .”
“But what if none of that happens?”
“Your brain is slowly destroying itself,” he said reluctantly, “and your body will just gradually shut down. A lot of times a decision is made not to go with a feeding tube or anything. Once the patient completely stops eating and drinking, they go pretty quickly.”
“What’s that gonna be like?”
“I don’t think you’re really going to be there. I think you’ll already be – gone.”
“But what about the guy who is there? What’s it gonna feel like for him?”
“Don’t worry about him, Dave,” Mike said softly, looking me right in the eyes. “I promise you that we’re going to take good care of him.”
A little bit later – when Mike had excused himself to return a call to his office – I pulled out my laptop. Until today I’d had no idea what exactly had been wrong with me and so I had searched for information on an entire slew of things that might be causing my symptoms. Now, however, I zeroed in on one thing – Alzheimer’s disease – and I paid much closer attention to what I read.
Soon I learned that while it was indeed possible for someone to live for five to twenty years after being diagnosed with Alzheimer’s, it certainly wasn’t very likely. As a matter of fact, the average life expectancy for patients after they had been diagnosed was . . .
“Four and a half years?” I cried when Mike got off the phone.
He just looked at me and didn’t say anything.
“Is that with or without the little blue pills?” I asked hotly.
“The medicine isn’t going to prolong your l
ife,” he said softly. “It’s going to make your quality of life better.”
“What else are you keeping from me?”
“I’m not keeping anything from you!” he insisted. “You didn’t ask me what the average life expectancy was.”
“Four and a half years?” I asked again, hoarsely. “Is that really true? I’ve only got four and a half years?”
“No one can tell you exactly how long you’re going to live,” he said. “You know that.”
He looked sad and I felt guilty for snapping at him.
“What can you tell me?” I asked quietly.
He hesitated for a moment, but eventually answered.
“In general,” he said, “you can expect to live about half as long as you would if you didn’t have Alzheimer’s.”
“Half as long,” I repeated.
He nodded.
“So,” I clarified, “in other words, if I was going to live for thirty more years, now I’m only gonna live for fifteen?”
“As a general rule of thumb,” he said, nodding again.
“But the average is only four and a half years . . .”
“A lot of people who are diagnosed are a lot older than you are,” he explained. “Plus your overall, general health plays a big role.”
“So . . . so I probably have a lot of time left.”
“Those aren’t the only factors,” he told me.
“What else?”
He hesitated. “How aggressive the disease is,” he finally said. “It varies greatly from patient to patient. Sometimes it progresses quickly, sometimes slowly. There’s a general feeling that the younger someone is when they’re diagnosed, the more aggressive it tends to be, but,” he hastened to add, “research hasn’t really shown that that’s necessarily true.”
A month ago my biggest worry had been whether or not the gas grill was going to run out of propane before the burgers were done. Now, suddenly, I was likely to find myself an hour from home with no idea how I’d gotten there or that the contents of our kitchen drawers had mysteriously been relocated to my office.
Somehow that was feeling pretty aggressive.
I was quiet for a moment.
“Remember how you said that a lot of times they decide not to use a feeding tube and stuff?” I finally asked, breaking the silence.
He nodded.
“Who’s gonna decide that?” I wanted to know. “Laci?”
He nodded again. “Most likely – unless you appoint someone else to be your healthcare power-of-attorney ahead of time.”
“What if I have a living will?” I asked.
“Ultimately Laci would make the final decisions even if they go against what you’ve put into a living will.”
“So what’s the point in having one then?” I asked.
“Well, for one thing, so Laci will know exactly what you want.”
“Why can’t I just tell her what I want?”
“When people are having to make difficult choices, it’s a lot easier for them to make a rational decision if it’s documented ahead of time. Plus, it’ll be a lot harder for anyone to fight her decisions if she has proof that she’s following your wishes.”
“You mean, like if the kids want her to do something different?”
“Well, yeah,” he agreed, “but I was really thinking of the doctors. Medical professionals are always afraid of lawsuits and not treating somebody is a sure-fire way of getting into trouble. If you have an advanced directive and Laci’s going along with it, she probably won’t have any problems.”
“Will you help me make one?”
“Sure.”
“Tonight?”
“Tonight? I don’t think we need to–”
“I know exactly what I want and I wanna write it down tonight,” I said emphatically.
“Okay,” Mike said slowly. “We’ll do it tonight.”
Before Laci and Danica got back, I called Dorito. He answered the phone before I even heard it ring.
“Hi, Dad,” he said, trying unsuccessfully to sound calm.
“Hey, Dorito. How’s everything going down there?”
“What did the doctor say?”
“He, ummm, he won’t be able to tell us anything until tomorrow.”
“Tomorrow?!” Dorito cried. “I thought Mom said you were going to find out this morning!”
“Well, I guess some of the test results aren’t back yet.”
He sighed heavily. “How are you doing?” he asked in a resigned voice.
“Great,” I said. “I’m doing great. Go back to work and quit worrying about me. I’m fine. I’ll talk to you tomorrow.”
I hung up the phone and turned around to find Mike standing in the doorway and looking at me.
“I . . . I just can’t tell him right now,” I said apologetically.
He nodded slightly, blinked away a fresh set of tears, and left the room.
That evening, Laci and I sat down with Mike and Danica at their dining room table and worked on my living will. Mike was very thorough and you could tell he was really making sure that he was covering all the bases. It took a lot longer than I had figured it would and we’d already been at it for over an hour when Mike asked, “Okay. What if you get to the point where you can’t swallow your food? Do you want a feeding tube?”
“No,” I said.
“Yes!” Laci argued. “I’m not gonna just let you waste away!”
“No!” I said again. “If somebody needs to feed me or whatever, I guess that’s fine, but if I can’t even swallow by myself you need to let me go.”
Laci sighed in resignation.
“What if you get cancer?” Mike asked.
“Just let it go,” I said.
“So, you’re just not even going to try to have a good life?” Laci asked, exasperated. “If next week you get diagnosed with cancer or something you’re just gonna curl up into a ball and die?”
“If I get diagnosed with cancer next week I hope I can still make my own decisions,” I told her. “We’re not talking about next week . . . we’re talking about what I want after I can’t speak for myself anymore. And if I’m not myself and I can’t decide what I want any more then, yes . . . I’d just as soon go ahead and die.”
“Fine,” Laci said, crossing her arms. She’d lost just about every argument we’d had since we’d started.
“Oxygen?” Mike asked.
“No.”
Laci didn’t even say anything.
“Actually,” Danica said quietly, “it’s more of a comfort measure than anything else. It’s not really going to prolong your life once it’s time.”
“Okay, fine.” I looked at Laci. “You can give me oxygen.”
“Whoop-dee-do,” Laci answered.
“That pretty much covers everything,” Mike said, gathering the papers up and straightening the stack. “Just take this to your lawyer’s office and have them write it up. I’ll be glad to double check it when it’s ready.”
“Thank you, Mike,” Laci told him.
“Wait a minute,” I said. “I’m not done. We haven’t talked about me going into a nursing home.”
“That’s not really something you’d specifically stipulate in a living will,” Mike said.
“Well, I think we should talk about it anyway.”
“Okay.”
I turned to Laci.
“As soon as I get bad I want you to put me into a nursing home.”
“No!”
“Yes.”
“Absolutely not!” Laci said, setting her jaw. “I am never going to put you in a nursing home!”
“Laci, that’s what I want.”
“Well, you know what?” she yelled. “I don’t really care what you want anymore! I’m the one who’s going to be in charge and I can pretty much guarantee you that I will not be putting you into a nursing home!”
“Well then,” I said. “I’ll just appoint somebody else to be my power-of-attorney . . . somebody who’ll do what I want.”
“You can’t do that!” she cried.
“Yes, I can, can’t I?”
I glanced over at Mike who was clearly not comfortable being in the middle of this.
“Actually,” he told her gently, “he can.”
Laci’s mouth dropped open in dismay and she glanced at Danica, obviously hoping that she was going to argue with Mike. When that didn’t happen, Laci slammed her hand against the table, got up from her chair, stormed through the living room and slammed the front door on her way out. Danica stood up and followed after her.
Mike and I didn’t say anything for a while.
“She’s so stubborn,” I finally said.
“And you’re not?”
“It’s my life, Mike.”
“It’s not just your life,” he said. “What if Laci was the one who was sick? Think about how this would be affecting you.”
“I know how this is affecting her! I’m trying to make things as easy for her as I can!”
“Look,” he said, “I know you don’t want to be a burden on her, but I personally think that she should get to be a part of this decision . . . if you ask my opinion.”
“Which I didn’t.”
“Okay,” he said, standing up. “I’ve created enough chaos for one night. I’m going to bed.”
“It’s not your fault,” I said quietly.
“I know.”
“And I’ll talk to her.”
“I know.”
Danica came back into the house alone a few minutes later and I looked at her expectantly.
“She just wanted to be alone for a bit,” she explained quietly.
I nodded, but put on my jacket and went outside into the cold night air. I went down to the end of the driveway and looked up and down the street, but couldn’t see Laci anywhere. Mike and Danica lived in a sprawling neighborhood and I knew I had little hope of finding her, so I went back to their front porch and sat down to wait.
I was still sitting there twenty minutes later when Laci finally came back. She was only wearing jeans and a sweater and she had her arms wrapped around her body, trying to ward off the cold. She stopped when she saw me and didn’t move until I held my hand out to her.
