Month: November 2007

What follows is two slices of life, nothing more. It is, perhaps, nonsensical in nature. As for Alice in Wonderland . . . that’s what it can feel like around here.

****

One night, early this week I think, I was busy rushing around the kitchen trying to make supper. Grandpa was busy doing his thing. In the evening this usually means either messing around in the kitchen while I work, or else sitting on the couch and calling for someone to tell him if everything is set to right, and complaining that the pillows aren’t working. This evening he was sitting on the couch, but around the halfway point in supper production he had to go to the bathroom, so I stopped what I was doing and got him to the toilet. I then returned to the kitchen where I kept half an ear on his continued muttered complaints about the (to him) incomprehensible and malfunctioning nature of the world.

Finally a plaintive squawk became loud enough that I decided it was time to go check on him. A quick dash away from the food on the stove to the bathroom and I asked, “What’s the matter?”

“I can’t get this to work right,” he said, holding up the carefully folded hand towel.

Seeing that he was done using the bathroom I said, “That’s okay, I’ll take care of it for you.” I hung the towel back on the rack. “There you go. You’re all done,” I prompted, and then rushed back to the stove.

Grandpa didn’t follow, and as I worked with the food on the stove I heard continued befuddled mumbling about things not working and not being where they’re supposed to.

“Everything is fine,” I yelled from the kitchen. “You’re all done!”

“What?” came back the alarmed shout. “Who died?”

“Nobody died!” I called back.

“Oh. You said nobody died.”

Short length of silence.

“Well, okay. Let’s go,” Grandpa’s voice drifted down the hall, obviously talking to himself, or, more precisely, to his imagined companions. “Come on, girls. Come on.” Brief pause. “Come on, girls. Girls!”

“There isn’t anybody, Grandpa,” I called out. “It’s just you, me, and the trees.”

“Yeah. Yeah . . . I guess that’s what I meant, the trees,” he said.

“I don’t know–” I heard his voice beginning to move down the hall and then caught a glimpse of him crawling past the kitchen entrance on his way back to the couch. “I don’t know anything. Money isn’t worth anything, [uncertain] isn’t worth anything, and I don’t think I’m worth anything,” he finished.

****

Wednesday Grandma had an eye exam. So long as the weather remains mild, when Grandpa has to come along for some appointment of Grandma’s, he and I stay in the car. It saves him from the stress of going into a completely strange environment, and saves me from making a scene by carting him around, or being required to loudly ask him if he needs to go to the bathroom when he gets out of a waiting room chair to start wandering. I don’t mind waiting in the car as it is more private than a waiting room and is a place where I can do whatever quiet things I want to get done. Grandpa doesn’t mind either, so long as Grandma doesn’t take too long.

But Grandpa’s patience lasts only about an hour, after which point he begins to get fidgety. I can keep him occupied for a little longer if I bring along my MP3 player which has the entire audio Bible on it. If I let him listen to that he can remain somewhat content a little longer.

Then there is always the bathroom issue.

Grandma’s eye exam ended up taking nearly two whole hours. That was far longer than Grandpa cared to stay in the car, especially when somewhere around an hour and a half into the wait he had to go to the bathroom. He may have needed to go before then, but it was only at that point which it became pressing enough that he became articulate.

This, of course, brought about a bit of a problem. Grandpa wears diapers, so when he finally said, “I have to go pee-pee,” I told him, “Then just go. You have a diaper on, I can easily change you when we get home. Don’t worry about it.”

Unsurprisingly, such an explanation wasn’t satisfactory. Grandpa and his bathroom needs and usage is no longer much about cognizant rationalization and mostly the fragmentary remains of deep seated habits. The result, as I have already chronicled, is a firm compulsion to not soil himself, even when this means pulling down his diaper and peeing on the carpet, in the sink, or on the table. There is no sense in it, and so no possible way to reason with him about it. He simply has to go, and doesn’t want to do it on himself.

“I got to find a bush or some place,” he said, and started scrabbling to find some way to get out of the car.

“Grandpa, you don’t want to do that,” I try to explain as gently as possible. “You don’t want to get arrested for indecency or something,” I said, trying to jest. “Just let it go. Don’t worry about it.”

We were sitting in a parking lot right along the main drag of 434 with cars whizzing by, and even if we should contemplate such an idea the only nearby bushes were the landscaping in front of the building which neither the proprietor nor the coming and going customers would appreciate us watering. I felt sorry for Grandpa, knowing that he must have to go very badly, and doesn’t really understand my answer beyond the fact that I didn’t want him to do what he wanted to do. For one second I thought about getting him out of the car and taking him into the office to use their bathroom, but I quickly played that thought out: “Hi, this decrepit old man who can hardly walk who I am dragging about really needs to use your bathroom, or perhaps we’ll just end up peeing all over your floor. It happens sometimes, I’m sure you won’t mind.” No, we wouldn’t do that. Grandpa would just have to suffer.

“I really have to go,” Grandpa said.

“I’m sorry,” I said. “You can’t get out. It’s okay, don’t worry about it.”

“I’ll just do a little bit,” he said, finally managing to get the door open.

So I got out from the driver’s seat and went around to put his feet back in the car, explaining that we can’t do that, he’ll just have to wait, it doesn’t matter and he doesn’t have to hold it in. Then I get back into the driver’s seat and electronically lock us in. At this point I’m trying hard not to laugh at the absurd stupidity of it all. Who would have ever thought I’d be locking myself and my grandfather in the car so he’d pee himself. What a cruel sick thing to do, and yet somehow you find yourself in the place where it seems the least unacceptable option. How does life get like this, you wonder.

“How do you get out?” Grandpa insists, still trying to work the door, and I keep trying to calm him and explain to him why it has to be this way. “Yeah, I understand what you’re saying,” he finally says (whether he really did or not is a different matter) “It’s just that I . . .”

“You don’t want to pee yourself,” I finish for him.

“Yeah,” he said, though the thought probably was not so clearly fixed in his mind.

We both lapsed into silence until a little later Grandpa said, “It’s strange, I don’t know, but the urge to go isn’t so bad anymore. I don’t need to go, so you don’t need to worry about it.”

I didn’t bother to explain to him why suddenly he didn’t need to go anymore. It was sufficient that he was no longer in distress. When we got home I could easily change him.

When we did get home we ran into a little more difficulty. The house is a split level, with the garage as part of the bottom, so there isn’t a lot of walking that has to be done to make it from the car to the couch upstairs, but when I helped Grandpa out of the car he said, “Boy, my legs feel so weak I don’t know if I can hold myself up.” This is not an unusual phenomena with Grandpa. If you’ve ever ridden a long time in the car you know how when you first get out there is some momentarily stiffness that can leave you feeling just a bit weak. For Grandpa sitting still even a much shorter time brings the same problem, and since he is already weak this leaves him feeling just about unable to stand, or walk.

I thought maybe I could coach him into the house, but when he wouldn’t budge with a little forward prodding and simply leaned on his walking stick and looked at the door into the house as if the distance were a million miles away . . . I knew getting him there would be a huge struggle. I decided it wasn’t worth the fight.

“Okay,” I said. “I’ll carry you.” I scooped him up in my arms and headed into the house, and started up the stairs.

“No, you’ll hurt yourself,” Grandpa protested. “I don’t want you to injure yourself.”

“I won’t,” I said. “It’s no problem. Don’t worry, I can do it easily. Want me to show you? I can sing and dance.”

So I sang “La-Da-De-Dah” like some grand opera star and sort of hop-danced the rest of the way up the stairs and over to the couch, where I carefully deposited him.

As if life wasn’t crazy enough, I have this urge to make it crazier.

And that’s a slice of life with Alice in Wonderland.

It is interesting to see how the mental aspect of Grandpa’s Alzheimer’s progresses. We can divide the mental function of the brain into two categories: (1) Dealing with outside stimuli, and (2) Processing one’s own internal thoughts and reflections. It is hard to judge how Alzheimer’s affects the latter–we can’t see into the mind of others, and we really don’t understand how our own thoughts process or work very well either. But on the first matter, that of the failing mind of an Alzheimer’s victim dealing with outside stimuli, and the breakdown of that ability, a close observer gets a front row seat to the effects of deteriorating cognitive ability.

For Grandpa, his ability to understand what he saw began failing before his ability to understand what he heard. Long ago I wrote about how he would see imaginary people and things. At times there were quasi-plausible explanations for the imagined people–a pillow or a blanket or some such thing that could be interpreted as a person by someone who was nearly blind or unable to make sense of what he was seeing. Other times there were no obvious triggers for the imagined things he saw.

There is a strange kind of tension between the sickness of the failing mind and the retained cognitive ability. The failing mind cannot keep itself anchored within the present, so people and things suddenly appearing are sometimes accepted without question. Thus Grandpa can suddenly start talking to an imagined person sitting on the couch, without any thought that it might be strange to have someone appearing in his house who he didn’t remember coming, and may not even recognize. The only thing that matters is that the person doesn’t respond to Grandpa’s conversing, and he can become indignant or hurt.

But then other times Grandpa does doubt himself. He will look in some direction and say, “Is there really [such-and-such] there?”

And I will say, “No, Grandpa, that is just a [chair, or whatever he is looking at]”

Then he will say, “Oh,” and look very perplexed because while what he saw didn’t make sense and so he questioned it, it was still what he thought he saw.

And sometimes he will say in despair, “I don’t know why I see things that aren’t there. It doesn’t make sense. I guess I don’t know nothing.”

Grandpa’s visual understanding of the world around him is not consistent. Some times he is better, other times he is worse. The trend is downward, and one think I notice in that downward trend is that, while he hasn’t lost things he had before, it is getting harder and harder for him to understand what he sees. For you and me we naturally interpret and understand what we are seeing. For Grandpa it is something he must work at. Recognizing people and things is mental effort much akin to how you or I might attempt to solve a difficult problem. And when it becomes too much work, or he is not paying attention, Grandpa doesn’t interpret or make sense of his surroundings. He ends up just being “someplace” with “things” around him. At such times he doesn’t know where he is, and he doesn’t know where anyone else is. In a very real sense, he finds himself alone. This is manifested when he talks to Grandma as if she was right there with him when she isn’t in the room, or asks her where she is when she is sitting right in front of him. He asks people where they are, and ask them where he is, and asks him where things are–and understands none of the answers.

“I’m sitting in my chair,” Grandma says.

“Where is that?” Grandpa says, looking right at her.

“Why don’t you sit on the couch,” Grandma says.

“Okay,” Grandpa says, standing beside the couch. “Where is that?”

That is Grandpa at his worst. He is as good as blind then–worse actually, because a blind man still knows how to orient himself in space but for Grandpa not only does he not understand what he is seeing, but he can’t relate things to each other within space. At a doorway he can turn left or right, but has no understanding which direction will take him where or why he would want to go in either direction. He simply goes on impulse, or faint memories–which means when he comes out of the bathroom he is just as likely to go to the bedroom as the living room. When I take him to the bathroom he says, “Okay, which way are we going, this way or that way?” and points in two different directions. He has no idea of the destination, and no surety even in the direction. You can’t point things out to him, or explain to him how things are done, because what he sees has no meaning.

That is Grandpa at his worst. He is not at his worst all the time, but rarely is he at his best. Most of the time he hovers somewhere in the middle, understanding some things, being able to understand some things, but existing in a limited state of awareness of his surroundings.

For a long time Grandpa’s hearing was his great support. Though his eyes deceived him, his ears would reassure him. If he called for someone and they answered he would be able to place them in relation to himself and would be comforted. Recently, his ability to understand what he hears has begun to noticeably fail. Sometimes he will call and someone will respond and he will say, “Where are you?” sounding very much like a person lost in a great dark void–when in reality the person responding might be sitting across from him in the living room, or just in the kitchen. He is losing the ability to spatially place sound.

He is also losing the ability to distinguish sounds. We recognize people when we see them, and we recognize people when we hear them. Grandpa has increasing ability recognizing who he sees–his own sons and daughters, and even increasingly Grandma–and now this is spreading to his hearing as well. I must distinguish between recognizing and knowing. So far Grandpa hasn’t demonstrated any forgetfulness that he is married and has children, grandchildren, and even great grandchildren. His failure, presently, is that he cannot recognize, or recall, who he is seeing. For example, he might say, “Who is that?” And I say, “That’s Daryl [his daughter, one of my aunts]” and he will say, “Oh, how are you doing Daryl,” and may even ask about her daughters, showing that he truly knows who Daryl is–he just didn’t place who he knew to be Daryl with the person in front of him.

I don’t know exactly when his hearing ability began to fail in the same manner. Leading up to my realization of this, Some months ago–probably about early summer–he almost spontaneously started calling for his brother Gene all the time. Obviously this itself was a clear manifestation of cognitive decline, as his brother Gene lives about a half hour or so away in Pennsylvania and hasn’t been up to visit in all the time I have been living with Grandma and Grandpa. But the call for Gene doesn’t have a single simplistic explanation–I don’t know that there is just one reason he calls for his older brother. At least part of the time the call seems to find it root in an emotional impulse–Grandpa is feeling lost, lonely, uncertain, confused, or any number of other things, and the impulse is to call for someone to set it right, to explain, or whatever. But sometimes Grandpa does want something concrete, and he will call for Gene in that situation also.

Initially when Grandpa called for Gene I would answer, “He’s not here. What do you want?” which would get varying responses.

“I want Gene.”

“Where is he?”

Or sometimes Grandpa would tell me what he wanted, or make something up. As Grandpa began to consistently call for Gene it grew tiring to constantly say, “He’s not here,” before inquiring what Grandpa wanted. And I also began to suspect that Grandpa was in the beginning stages of conflating me with Gene. So instead of informing Grandpa that Gene wasn’t present, I took to simply answering his call of “Gene!” with, “What do you want?”

At first, maybe fifty present of the time Grandpa would say, “You’re not Gene.” And I would say, “No, but Gene isn’t here, so I’m answering for him. Now when Grandpa calls for Gene I answer, and rarely does he say, “You’re not Gene.”

Discovering how much simpler it made life for me if I simply answered Grandpa when he called for someone I started answering when he called “Ma!” Realizing that I haven’t been in Grandpa’s life long enough for him to ever get in the habit of calling for me, I have begun answering for whoever is called.

Again, while at first Grandpa would say, “You’re not Ma” when I answered he began to do so less and less. I initially thought he was becoming accustomed to someone answering for Grandma, but then an incident revealed that in truth he was having trouble distinguishing who answered him.

One evening he said, “Hey Ma!”

“What?” I said.

“Why don’t you come sit down beside me,” he said.

“Okay,” I said and got up from the computer to go over and sit down beside him.

“Not you,” Grandpa said, seeing me approach. “That woman said she would come sit with me.”

“No that was me who answered you,” I said.

From that point on it became increasing clear that Grandpa often could not distinguish who answered him. This discovery made life much easier for me because now when Grandpa would call incessantly for someone (usually Gene or Grandma) I could answer for either and quiet him. If he said, “Ma, how are you doing?” I could say, “Just fine,” and he would be satisfied. Or if he said, “Ma, where are you?” and I would say, “Over here,” and he would be appeased.

It is not as if he never recognizes who is speaking, just as he can still recognize things he sees. But I think he has to be very much paying attention to distinguish who is speaking.

However, things have continued to deteriorate. A few weeks ago one evening Grandpa was hollering “Ma? Ma? Ma?” so I came over and said, “What do you want?”

Grandpa stared at me for a long minute. “Well?” he said. “She asked you what you wanted.”

That was a new one for surreal exchanges where I somehow ended up being responsible for carrying on both ends of the conversation as two (or perhaps three?) different people.

Again, more recently, Grandpa was calling for Gene but seemed to have no particular want in mind because when I came and inquired he muttered and mumbled stuff while pointing at the chairs and objects around him. I assured him that everything was all right.

“Well, yeah, okay . . .” he said, and turned back to his fussing. Ten seconds later, “Hey, Gene!”

“Yeah, what do you want,” I said. “I’m still standing right behind you. I came last time you called.”

“Oh, geez!” Grandpa said, startling, having already forgotten I was there. “Yeah, I guess you did. Well how am I going to distinguish between when you and I speak?” he said, very well summarizing his problems.

And that is where we are now.

I was going to finish off with a recounting of how Grandpa was sick last Saturday, but I’ve already spent too much time on this, and anyhow it seemed like it might have turned out too much sounding like a “sob-sob pity me and my trials” kind of thing, which it wasn’t and not the kind of attitude one wants to project. Suffice to say just being a little bit sick robs Grandpa of what senses he still has, and rendered him nearly unable to eat, drink, or function. All the result of a minor head cold. He also peed on the kitchen table.

Not sure how comprehensible that entire post was, but I wrote it fast and now I gotta go.